* If you are dealing with anti-Kell antibodies and are searching for information, don’t be scared or discouraged by my story. Your baby will probably be fine as long as you educate yourself and make sure you and your baby get the correct treatment. Make sure to check the bottom of the page for the steps you need to take to ensure you are getting the best treatment possible. For more resources check out The Allo Hope Foundation.
Before developing anti-Kell antibodies, I had two normal pregnancies and delivered two healthy baby boys, both born at 41 weeks. When I was pregnant with my third baby, I discovered at nine weeks that I had anti-Kell antibodies. I had never heard of anti-Kell antibodies and couldn’t find much information online. It was terrifying. Long story short, I have had four Kell sensitized pregnancies with VERY different outcomes. Lucy was stillborn halfway through the pregnancy. My next baby, Nora, was born healthy at 37 weeks 6 days and has no lasting effects from the antibodies that tried to kill her in the womb. After Nora we had Callum, who was born at 34 weeks 4 days and is now a healthy, super smart preschooler. Our last baby, August, was born at 37 weeks 1 day and is a healthy one year old now. Over the past nine years I have done a lot of research and asked a lot of questions, and I now have a much better understanding of this disorder than when I was first diagnosed. I will do my best to explain anti-Kell antibodies and how they work. The more you understand, the better you can advocate for your baby and keep your baby safe.
Disclaimer: I am not a doctor or a medical professional. This is what I understand about anti-Kell antibodies.
Kell is an antigen found in some people’s blood, so basically it’s kind of like a blood type. It’s not dangerous at all. My husband, Josh, and my children, Asher, Lucy, Nora, Callum, August and possibly Liam all are positive for the Kell antigen. About 9% of Caucasians are Kell antigen positive. I don’t have the Kell antigen, and that’s where the trouble begins. My pregnancies with Liam and Asher were totally normal and healthy because I did not have anti-Kell antibodies yet. When I gave birth to Asher (who has Kell antigen positive blood) some of his blood leaked out and mixed with my blood. This is normal during childbirth, especially a vaginal delivery of a 10 lb baby! Because my blood is Kell negative, my body saw Asher’s blood as something foreign and dangerous. My body thought Asher’s blood was a virus, even though it wasn’t. When our bodies get a virus we make antibodies. Antibodies are like the soldiers who go and kill the virus. When we get vaccinated we are injected with a little bit of the disease, then our bodies produce antibodies to kill it. After the vaccination, our bodies are well armed with antibodies to kill the disease and that’s what keeps us safe. So, because my body thought Asher’s Kell positive blood was a virus, I produced anti-Kell antibodies to destroy it. The antibodies I produced were specifically designed to find and destroy red blood cells containing the Kell antigen. This is called being sensitized. It didn’t hurt Asher because it happened right as he was being born. He got out just in time. There is another way that women can become sensitized. If a Kell negative woman is given a blood transfusion with Kell positive blood, her body could react the same way mine did when I gave birth to Asher- by creating antibodies as a response to being exposed to Kell positive blood. There are also recent studies that show that intravenous drug abuse can possibly cause sensitization as well.
My husband found out through a simple blood test (done by my regular OB) that he is heterozygous for Kell, which means he has the recessive gene. This just means that each one of our kids had a 50% chance of being Kell positive like Josh or Kell negative like me. The only way the antibodies can hurt the baby is if the baby is Kell antigen positive. If the baby is Kell negative, the antibodies cannot affect him/her and it will be a “normal” pregnancy. With each pregnancy we were hopeful that our baby would have my blood type, but we always got the wrong 50% because our last five kids have all been Kell antigen positive. If Josh had been homozygous for Kell, our kids would have all had a 100% chance of being Kell positive. Most people who are positive for the Kell antigen are heterozygous like my husband.
My body will always produce anti-Kell antibodies, I can never get rid of them. I have basically been vaccinated against my husband’s blood type, so anything inside my body with his blood type will be attacked by my antibodies. Unfortunately, like I mentioned earlier, Lucy got her Daddy’s blood type. She was Kell positive. She was a healthy, kicking girl throughout the first trimester and the beginning of the second. Babies don’t produce their own red blood cells until the end of the first trimester/beginning of the second. When Lucy started making her own blood, my anti-Kell antibodies crossed the placenta and recognized her blood as something dangerous. The antibodies started attacking and destroying her red blood cells. This can make the babies become anemic and eventually can cause fetal hydrops or even death if the fetal anemia is untreated. Thankfully, with the correct monitoring, fetal anemia can be caught in time to treat before it becomes severe.
The way the anti-Kell antibodies are measured is something called a titer (pronounced “tight-er”.) The titer shows the amount of antibodies in the mother’s blood. When a mother’s titer reaches 4 it becomes critical for the baby. This just means that the antibodies can affect the baby at that level. My titer was 1,024 from the very beginning of my pregnancy with Lucy. Titers can be expressed as a ratio like this 1:16 or just the number itself, 16. A titer of 1:16 and a titer of 16 mean the same thing. The critical titer for Kell is 4 and the critical titer for all of the other antibodies is 16. I have heard different “facts” about antibody titers from different people. Some believe that the titer rises as the antibodies attack the baby, so a rising titer indicates a Kell positive baby, and a low titer indicates a Kell negative baby. Some believe that every subsequent pregnancy will be more dangerous because the titer will be higher. The one thing about titers that everyone agrees on is that they are unpredictable and are not to be trusted. My titer never changed throughout my pregnancy with Lucy, during the two years when I wasn’t pregnant and during my pregnancy with Nora, who was Kell positive also. It has always been 1,024. It did go down to 512 with my last baby, Callum, and was 256 at the end of the pregnancy. Before I got pregnant with August we tested my titer and it was 2,048, the highest it had ever been. In general, the higher the titer, the more dangerous it is to the baby, for example, we can assume that a woman with a 1,024 titer will have a much higher chance of having an affected baby than a woman with a titer of 2. However, the extent to which the baby is affected relies on several different factors besides the titer- how aggressive the antibodies are, how the baby handles the antibodies, whether there are other antibodies present, the baby’s gender (girls tend to do better than boys, supposedly) and especially, the monitoring and treatment given during the pregnancy. Just because your titer is very high, it doesn’t mean you are going to lose your baby, and it doesn’t mean your baby is Kell positive. Just because your titer is low, it doesn’t mean your baby is safe and it doesn’t mean your baby is Kell negative. The best thing you can do for your baby is find a good MFM (maternal fetal medicine specialist) who is knowledgeable about these antibodies (or who is willing to learn), educate yourself on the disease and make sure you are getting the right treatment and monitoring during the pregnancy. I had the same titer with my daughter Lucy and with my daughter Nora. With Lucy I did not receive the right monitoring and treatment, so she was stillborn. With Nora I did receive the right monitoring and treatment from very experienced MFMs and she is now a healthy little girl. My sons, Callum and August, also received the correct monitoring and treatment and they are perfectly healthy now.
So what does the monitoring and treatment look like? Babies should be monitored very closely and can be given an intrauterine blood transfusion if they become anemic. Regular ultrasounds or even in depth level 2 ultrasounds cannot detect fetal anemia, unless the anemia is so severe that it has started compromising baby’s organs or fetal hydrops has started. The goal is to discover and treat the anemia before it ever gets to that point. Doctors can detect and measure fetal anemia by doing an MCA doppler scan. MCA stands for middle cerebral artery. It’s the central artery in the baby’s brain. A really powerful ultrasound is used to measure the blood flow through this artery. If the blood is moving too fast, they know the baby is anemic. They give the baby an MoM (multiples of median) score that shows how anemic the baby is. The median MoM is 1. If the baby’s MoM starts creeping up and gets to a 1.5 that means he/she is anemic. Once the MoM is 1.5 or over, the doctor should do an intrauterine blood transfusion (IUT) on the baby to resolve the anemia. Usually babies aren’t affected until late in the second trimester or early in third trimester, but in extreme cases they can be affected as early as 15 weeks. The baby can’t be harmed by the antibodies in the first trimester. The earliest loss I have seen from these antibodies was at 14/15 weeks, although some women say they have lost babies as early as 13 weeks. Lucy had her first MCA scan a day or two before 18 weeks and her MoM was 2.5. She was severely anemic. They did an IUT on her the next morning. My baby Nora had her first MCA scan at 15 weeks and weekly after that. She had 5 IUTs. My son Callum had his first MCA scan at 14 weeks and had 3 IUTs. Baby August had his first MCA scan at 14 weeks and needed 7 IUTs. If you have a critical titer, you should start MCA scans by 16-18 weeks and have them done weekly to check the baby for anemia. If you have a titer in the hundreds or thousands it is best to start MCA scans by 16 weeks.
When an IUT is performed, the doctor basically sticks a really long needle through the Mom’s belly into the uterus and into the baby’s umbilical vein. They put fresh, Kell negative blood packed with red blood cells into the baby. If the baby is too small and the doctor can’t get into the vein they just stick the needle into the baby’s abdomen and put the blood there (called an IPT.) The blood placed in the baby’s cord relieves the anemia immediately. The blood placed in the baby’s abdomen is absorbed over the following days/weeks and can act as a reserve, slowly filling baby up as she becomes anemic over time. Some doctors prefer to put blood into the baby’s cord and belly to resolve the anemia immediately and give baby a future reserve of blood in order to get more time between IUTs. Some doctors prefer to only put blood into the cord and will need to perform the next IUT sooner. If you want to know more about the IUT procedure you can read about my transfusions with Nora here. Dr. Moise always rescanned Nora the day after an IUT to make sure she handled the procedure ok. Dr. Trevett also scanned my babies 24 hours after every IUT. Usually, if there is a complication from the IUT it happens within the first 24 hours after the procedure. My little Lucy was left for seven days after her IUT before they would scan her to see how she handled the procedure. Make sure you only let experienced MFMs perform your IUT.
Some women have extremely aggressive antibodies, so the concern is that the baby will become anemic before she is big enough to have an IUT. Only very skilled and experienced MFMs can perform a successful IUT on a baby younger than 20 weeks. The smaller the baby, the more difficult and dangerous the procedure is. One way to protect the baby until she is big enough for an IUT is to give the woman plasmapheresis and IVIG treatments or IVIG alone. With Nora, Callum and August I started plasmapheresis and IVIG around 10 weeks and the treatments saved their lives. These treatments are usually only given to women who have had a previous loss or a severely affected baby in a previous pregnancy, or women with extremely high titers.
One last thing- a lot of people ask me why I couldn’t get “the shot” to prevent my body from making the antibodies in the first place. There are many different types of red cell antibodies, and the most common type is anti-D antibodies (Rh disease.) Because it’s so common they developed a preventative shot called RhoGAM that can be given to a pregnant woman before she develops antibodies and it keeps her baby safe (although it does fail at times and some women still end up developing anti-D antibodies.) There is no preventative shot for Kell. After Lucy died I asked my doctor why they haven’t developed a preventative shot for Kell like rhoGHAM. He said it doesn’t affect enough people and isn’t profitable for the pharmaceutical companies.
UPDATE- Dr. Moise is currently working on a new treatment for women with anti-Kell antibodies (and other antibodies.) There might ACTUALLY be a shot one day that can protect these babies from anti-Kell antibodies. You can learn more about this possible new treatment HERE.
* For women with anti-Kell antibodies: Please don’t be scared by my story. What happened to Lucy is VERY rare, almost unheard of. Your baby will probably be fine as long as you make sure you are getting the right treatment. I’ve heard that most babies in a Kell sensitized pregnancy have a great survival rate. If you just found out you have anti-Kell antibodies you need to do several things:
Find out what your titer is
Have the baby’s father tested for the Kell antigen (NOT anti-Kell antibodies)
If the baby’s father is Kell antigen negative, the baby cannot be harmed by the antibodies and is safe.
If he is positive for the Kell antigen, have him phenotyped to find out if he is homozygous or heterozygous for Kell to know if your baby has a 100% chance (homozygous) or a 50% chance (heterozygous) of being Kell positive.
Get a referral to an MFM
If you have a titer of 1:4 or higher, make sure you have your first MCA scan between 16-18 weeks and weekly after that. If your doctor wants to wait until after 18 weeks for the first MCA scan, you should insist on it and if they won’t budge, ask to be referred to a hospital that will. With Nora, I had my first MCA scan at 15 weeks.
Buy a notebook or journal and keep it with you at every appointment and every procedure. Write down all the information your doctor gives you. Think of all the questions you want to ask before each appointment and have them written down in the notebook. Write down all the answers. (I also had encouraging Bible verses written down that helped a lot.)
Remember that YOU are the only person who can speak for your baby. You are your baby’s voice. If you are unsure about something, don’t be afraid to ask the doctor. If you feel like something might not be right, go in immediately and have your baby checked out. Don’t be scared to look stupid or be annoying. That doesn’t matter when you compare it to the worth of your baby’s life. Read this post to avoid making this very common and dangerous mistake many women make.
If you have lost a baby to antibodies before, have had a severely affected baby before or have an anti-Kell or anti-D titer in the hundreds or thousands, read THIS
Feel free to email me or private message me on Facebook if you have any questions about anti-Kell antibodies: [email protected] or just ask your question in the comment section below.
Remember that ultimately your baby’s life is in God’s hands. Try to rest in the fact that He loves your baby more than you do.
As most of you know, we are trying to conceive baby #5 (and hopefully earth-baby #3.)
I would love it if you all prayed for the next baby to be kell-negative.
I keep thinking that I will start sending out prayer requests for the baby after we get pregnant, but the baby’s blood type is decided at conception. It makes sense to pray now instead of after the baby is conceived. I’m not sure why this just dawned on me.
Anyway, if the baby inherits my blood type (kell-negative) I will have a normal pregnancy. If the baby gets Josh’s blood type (kell-positive) the baby will have a very low chance of surviving the pregnancy. For more info you can look at “Anti-kell Antibodies.” All of our babies have a 50/50 chance of having either of these blood types, but we know that God is the one who chooses our next baby’s blood type.
We would be so devastated to lose another precious child. Please come together with us and pray for a kell-negative baby. God tells us that He loves giving His children good things that they ask for. He wants us to ask. We believe in the power of prayer and we want all of you to come on this journey with us and see what amazing things God does. We are so thankful for you all!
Matthew 7:7-11 Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. Or which one of you, if his son asks him for bread, will give him a stone? Or if he asks for a fish, will give him a serpent? If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask Him!
Our sweet boy, August Judah Weathersby, arrived almost two weeks ago and every day since then we have fallen more in love with our boy. August was born at 37 weeks and 1 day, which is incredible considering the circumstances. He weighed 8lbs 1oz and was 21 inches long.
This was my second c-section and it was different in a lot of ways from my last c-section. Callum’s delivery was completely unexpected and urgent (he was going into distress so we had to deliver as quickly as possible) but this one was planned. Josh wasn’t able to make it to Atlanta in time for Callum’s birth so I was alone for the c-section, but this time Josh was with me the whole time. We drove up to Atlanta the night before and ordered food from our favorite Thai restaurant. Then we snuggled on the couch in our hotel while eating dinner and watching a movie. We were buzzing with excitement and disbelief that we had actually made it this far, things had gone smoothly and our baby was still alive and ready to meet us the next morning.
During the c-section, Dr. Trevett was able to join us, which was so special. He wasn’t actually doing the procedure (my OBGYN, Dr. Howard performed the c-section) but he was able to stand right next to me and be there for the delivery. Right after August was born we couldn’t see him yet but we could hear him crying and I was desperate to get a glimpse of him. I think he was grunting so they had to work on him a bit to make sure he wasn’t having trouble breathing. Dr. Trevett told us, “He looks really good, he’s big! And he has a lot of hair! It looks blond!” It was fun to have him narrate when we couldn’t see August yet. They finally brought August to us and he was so beautiful and pink and chubby. He looked like a normal full term healthy baby, not a baby who had just fought for his life for 8 months. We were so in love. I told Dr. Trevett, “He’s only here because of you.” And he laughed and said, “Well, you guys had a lot to do with it too.” The c-section went great and felt like it took 10 minutes and then I was taken to recovery. August was taken to the transition nursery for observation since he was still grunting. They wanted to do blood tests and make sure he was breathing well. After observation and testing they would decide if he needed to go to the NICU or if he could come to my room and stay with us.
Once we were taken to our hospital room everything was suddenly still and quiet and Josh and I were alone. We were so overjoyed that our son was here and he was safe. We had a few pictures of August from the operating room that we looked through over and over again and discussed. Who does he look like? I wonder what his hair looks like under that hat? I thought he would weigh more, what about you? As the minutes and then the hours ticked by I became more and more upset that we couldn’t see August. I remember after Callum was born I was not allowed to go see him for 12 hours after the c-section. That is the hospital policy for all women who have c-sections- no getting out of bed for 12 hours. This isn’t a big deal for the families who have healthy babies because the babies are in the room with them, but for the families whose babies are whisked away for observation or admittance to the NICU, this can feel excruciating. For me, the 12 hours after Callum was born were by far the hardest of his entire 20 day NICU stay. There is a deep primal need to have your baby with you after birth, to have him tucked up safely under your chin on your chest. The ache feels almost physical when you give birth and then there is no baby in sight, no skin to skin contact, no newborn smell. My pain might be more intense because of the trauma we experienced with Lucy, but I’m not so sure. I have a suspicion that the ache is just as deep even for mothers who haven’t lost babies.
Josh was wonderful and called the transition nursery over and over again for an update on August, and asked how much longer until we could see him. They told us his blood sugar was low, his hematocrit was great (39), so he wasn’t anemic, but his bilirubin was a bit high (4). They put him under phototherapy lights to bring his bilirubin down and they told us as soon as they were sure that he was breathing well they would try to send him to the well baby nursery on our floor. We were both relieved that he was doing so well, but I started to feel panicky looking around our empty hospital room. It brought me back to the hospital room we stayed in after Lucy died. No bassinet, no baby, just a heartbreaking empty silence. Josh decided to go get our bags and pillows from the car and once I was alone I allowed myself to cry. Part of me felt like I didn’t deserve to cry because my baby was alive and well, and so many other women’s babies weren’t alive. But I could not contain my tears, I sobbed and sobbed, aching for my baby August who I hadn’t even held yet. A nurse came in and saw that I was crying in my bed and I felt ridiculous, but she was so kind and compassionate. She went and talked to the head nurse who also came in and asked if there was anything they could do to help. I said the only thing I wanted was my baby and I understood that they couldn’t do anything to change hospital policy. They tried reassuring me that he would be fine and I clarified that I wasn’t worried about him at all, I just needed my baby with me. I told them that I had struggled in the past with PTSD after losing my daughter and this felt like PTSD (mixed with some intense hormones I’m sure.) Josh was also really sweet and affectionate and kept calling to check on August. After 8 hours of waiting we finally looked up and saw a nurse wheeling in a bassinet. You guys, we felt EUPHORIC when we realized it was him.
Josh got to hold him first and then I got to hold him on my chest and it was magical. He felt like God’s redemption in the flesh.
Josh and I cuddled with him and smelled him and savored every little detail we discovered. His dimples, his wavy blond hair, the cleft in his chin, his enormous feet and long toes, the way his little nose turns up, the birth mark on his forehead and eyelids (that all of our other babies had too.) It felt like such a gift to be able to soak him in and learn him and hear his little newborn sounds. His bilirubin was still a bit high so we had to keep him under the bili lights but we were so happy to be able to have him in the room with us.
The rest of our time in the hospital was spent enjoying our new son, getting his bilirubin under control, taking a million pictures and trying to get back into the rhythm of pumping and breastfeeding. Josh and I loved having this time together to bond with August without the stress of looking after our other four kids. Because of COVID restrictions, we weren’t allowed to have any visitors at the hospital. At first we were really sad about this because it meant that our parents, siblings and the kids couldn’t come meet August after he was born. But it turned out to be a really sweet time together in our hospital room, just the three of us cocooned in. Josh and I could talk for hours without being interrupted by the kids. We marveled in disbelief at August’s life.
I realized during this time together just how much I had missed with Callum. While he was in the NICU I didn’t feel like he was my baby. It felt like he belonged to the hospital and I didn’t have any ownership over him, like my parental rights hadn’t been granted to me yet. I had to ask them for permission to hold him, feed him, get him dressed. Now, since August wasn’t in the NICU and was in my room with me, he felt like he was mine. The nurses asked me if they could hold him, check his vitals, change his diaper. I was able to bond with him in a way that I couldn’t with Callum until I was home with him. I felt so thankful for this experience with August. It felt like another piece of my healing puzzle clicked into place. Another beautiful, undeserved gift from God.
After about 3 or 4 days under the lights, August’s bilirubin was low enough to stay off the lights. His hematocrit and hemoglobin stayed steady and the last time they checked, his hematocrit was 43. Dr. Trevett came twice to visit August and see how we were doing. As always I could not find the right words to express our gratitude for the amazing care he provided during my pregnancy. Not only did he manage an extremely risky alloimmunized pregnancy but he did so in the in the middle of a pandemic. Throughout my pregnancy he saw me every single week (sometimes twice a week), monitored August closely and helped me manage my fears and anxieties along the way. Dr. Trevett performed 7 intrauterine blood transfusions on August and got him all the way to 37 weeks safely. Thanks to him, August was born alive and healthy. We are so thankful for Dr. Trevett and all that he has done for our family.
We are also incredibly thankful for Dr. Moise who helped throughout my pregnancy as well, just from a distance. He checked in on a regular basis to see how the pregnancy was going and he was available any time Dr. Trevett or I had questions about my treatment. He was also ready to do any early IUTs if they had been needed.
August and I were discharged from the hospital together, which was a dream come true. No NICU stay, no leaving the hospital empty handed.
When we got home, the kids and my parents and even the neighbors were waiting outside in the yard, ready to meet baby August. The kids were so excited and relieved to finally see their baby brother in person, alive and healthy. We had warned them from the beginning that we didn’t know if he would survive and we didn’t know if we would get to bring him home or not. Just like we did during my pregnancies with Nora and Callum, we were very clear with the kids about what was happening inside my body and the risks that the baby was facing. We never gave them false hope or made promises that we weren’t sure we could keep. They prayed every night for God to protect their baby, which made it extra sweet when we finally got to see them meet their brother.
Over the past two weeks we have enjoyed our baby August so much. Seeing my five kids together feels so right, like a long aching desire fulfilled, like God’s promise kept in the most beautiful way. When I look at August I think about these verses from Isaiah 41-
17 When the poor and needy seek water,and there is none,and their tongue is parched with thirst,I the LORD will answer them;I the God of Israel will not forsake them.18 I will open rivers on the bare heights,and fountains in the midst of the valleys.I will make the wilderness a pool of water,and the dry land springs of water.19 I will put in the wilderness the cedar,the acacia, the myrtle, and the olive.I will set in the desert the cypress,the plane and the pine together,20 that they may see and know,may consider and understand together,that the hand of the LORD has done this,
the Holy One of Israel has created it.
Seven years ago we were told that we could never have any more biological children. And yet, in the desert wasteland of my womb God grew THREE healthy Kell positive babies. I hope when you look at our baby August you see what I see- a miracle that only the hand of the Lord could have performed. The Lord has done this, the Holy One of Israel has created this sweet baby and sustained him.
There is still so much more to write about but this blog post is already way longer than it should be so I will write more later. Thank you so much to every one of you who prayed for August and followed along during the pregnancy. We have been so encouraged by all of the support and kindness you have shown us.
Since losing my babies I have encountered the same scenario that many other baby loss moms also encounter on a regular basis. That awkward moment when someone says something like, “How many kids do you have?” or “Is this your first baby?” or “When are you going to start trying for that girl?” I had someone give me a very sweet compliment that actually broke my heart, “You look GREAT after having two kids!” I wanted to correct her and say, “I’ve had three kids,” but I just smiled and said thanks. I still regret not speaking up. I also had a really awkward experience when I was running late to one of my sons’ doctor’s appointments. We rushed into the waiting room and my boys were loud and full of energy and I’m pretty sure one of them was missing a shoe. When I finally sat down after signing in, an older lady leaned over, and with a knowing look she said, “Aren’t you glad you stopped when you did?” I was so taken aback I just didn’t have a ready response for that one. I said, “Oh, I’m not done yet.” Looking back, I should have said, “I didn’t stop at two. They have three younger siblings in heaven.”
It is hard to know what to say. Most of the time I am torn between telling the truth and possibly ending up in tears in public, AGAIN, or keeping quiet and feeling like I’m disowning my children or fueling our society’s ridiculous pressure to keep miscarriage and stillbirth on the down low. Looking back, I can only think of one or two times that I spoke up about my loss and regretted it. One guy at our yard sale fundraiser actually laughed when I mentioned that I had a daughter in heaven. And the other time was when another pregnant woman (due around Lucy’s due date) told me to be happy that I didn’t have to be pregnant in the summer. I still have trouble letting that one go. But all of the other countless times that I have spoken up about my Lucy, Jude or Pax, I have been incredibly encouraged and I have often been a comfort to others. EVERY single time another woman has shared her story of baby loss with me I have been overwhelmingly grateful, humbled, and comforted. Why should this feel like such a lonely club when SO many other women are in the club with me? It shouldn’t.
I want to challenge you to speak up about your loss, your child or children. Of course some people prefer to grieve quietly and privately, which I think is wonderful too. But if you feel like you might want someone to know about your lost child, I say tell them. And if you have a niece, nephew, brother, sister, or grandchild that is in heaven, I want to challenge you to speak up as well. I long to hear my siblings acknowledge Lucy, to hear my parents and in laws speak her name, to see that others remember my daughter. I want her to be just as important to them as Liam and Asher are. This past spring Liam played soccer for the first time and to tell you the truth, I was terrified. I dreaded it for weeks ahead of time, because I knew there was a good chance that it would be crawling with triggers. I know a few families who have kids playing soccer as well and they have babies Lucy’s age. I was afraid of having to constantly be around pregnant bellies or baby girls. I remember walking out on the field with Liam and Asher in tow, feeling completely alone, sad and anxious. It felt like all the other families were whole, not missing anyone, like every woman got to keep her babies (which I know is not true, but it felt that way.) I often feel like an outsider. Well, one day near the beginning of the season it was extremely cold and I felt bad about taking little Asher outside for two hours in the freezing wind. My dad offered to take Liam to practice so I could stay home with Asher. Later after practice, my dad told me that he had started talking to one of the other parents on the sidelines. The man asked my dad about Liam and my dad said, “He’s my grandson. I have eight grandchildren on earth and three in heaven.” That led this other man to open up to my dad and he told him that he and his wife had lost twins at 22 weeks a few years ago. When my dad told me this I was shocked. I felt so overwhelmingly happy that he included my three babies with the eight on earth. I loved hearing that he acknowledged all of his grandchildren, that he is proud of ALL of them. I also felt like I WASN’T alone out there on the soccer field. Someone else knew how I felt, and that was such a comfort to me. I never was able to find out who my dad had been talking to, I think it was actually a parent from a different team, but I never felt alone again at any of the practices or games. I am so thankful my dad spoke up, even though the easier thing would have been to keep silent.
I think it is also important to speak up about our babies at home, around the other children (if there are siblings, or siblings to come.) I have a framed picture of Lucy’s footprints in each of the boy’s bedrooms so they see it every day and remember their little sister. A few weeks ago I was talking over the fence in the backyard to one of our neighbors, an eight year old boy. He had seen Lucy’s tree marker in our yard. It’s there temporarily until we can get it to her oak tree. Anyway, he asked who Lucy was and I told him it was our baby girl who had died last year. I was shocked when he asked, “Oh, well did she die before or after she came out of your belly?” I told him she died before she came out of my belly and he astounded me again by saying, without hesitation or embarrassment, “Oh, my mom had four babies who died in her belly before they came out.” Wow. FOUR! I never would have known if he had not said something. He seemed so comfortable talking about it too, which I loved. Apparently, his mom talks about her lost babies at home. Another person who spoke up and blessed me with his story was a random pizza delivery guy. Liam opened the door when he knocked. The delivery man was probably in his forties and was sweet to the boys, asking them what their names were. Liam said, “I’m Liam and this is my little brother Asher and I have a sister named Camille.” Liam and his cousin, Camille are very close and sometimes tell people they are siblings. Before I could correct him, the man said, “Oh that is sweet. I have a sister but I don’t know what her name is because she is in heaven. One day I will ask her what her name is when I get to heaven.” My mouth dropped right open. He told me his mother had had a stillborn baby girl before he was born and she had never told him what his sister’s name was. I told him that we had lost a baby girl too. I was so touched that this man would share his sister’s story with my kids and show them that they are not the only ones who have lost a sister.
A few months ago I heard this proverb-
I think there is some real truth to that statement. If you have lost a baby, don’t feel like you have to stay silent. Your story might bless and encourage someone more than you know and your own sorrow might be lessened in the sharing. Don’t be afraid to speak up.
I’m so proud of my friend, Cassandra Blomberg, for being brave enough to share her personal story of loss and to help break the silence surrounding miscarriage and stillbirth. Similar to the way I lost Lucy, Cassandra lost her daughter, Violet, to anti-c antibodies in her first sensitized pregnancy. She and I had miscarriages around the same time after we lost our daughters. We also both had our rainbow babies around the same time and they survived because of the same treatments (plasmapheresis and IVIG.) Cassandra was the only person I knew of who ever tried to have a second baby using plasmapheresis and IVIG. Her healthy baby Beckett inspired us and gave us the courage to try for our baby Callum (thank you Beckett!) Our society desperately needs to change how we view and talk about miscarriage and stillbirth. Here is Cassandra’s Tedx Talk “Silently Suffering After Pregnancy Loss”:
It is hard to believe that my daughter would be turning five this year if she had been born alive. How did I survive five whole years with this ache inside my chest? I wonder who she would be today. Would she be reading super early like her brothers or would she show no interest in letters like her sister? Would she be doing gymnastics like I was at five? Would she have curly hair like Nora? Would Lucy be stubborn and independent like I was as a kid? Or would she be a rule follower like her Daddy? Would she be a tomboy or would she prefer Barbies? I wonder what her voice sounds like. I wonder who her little friends would be. Oh I miss my baby so much.
I’ve been telling Nora about her big sister lately and she accepts it all as completely normal, like everyone has a sister in heaven. The other day I got my Lucy box down and let Nora look through it. She loved seeing her sister’s pillow, dress, hat, blanket, pictures and even the many cards we have saved from our friends and family.
I know that right now Nora doesn’t really understand what it means to lose a sister, but one day when she is older she will grieve the loss of that special relationship. There is still so much heartache to come.
Over the past couple of weeks I’ve been reading back in my journal from the days leading up to Lucy’s death. I can tell from the buoyancy of my writing that I was a different person then. Cheerful and optimistic. Sure that God would save her if I had enough faith. Then at the end of my 17th week of pregnancy (or possibly 18th week since they changed her due date a couple times) I wrote:
My baby might die tomorrow. She has to have an intrauterine blood transfusion at 17 weeks 6 days. I sobbed in the shower tonight crying out to God for her life. “I want to keep her! I want to keep her!” I cried over and over again. God said, “Whatever happens, you have her for eternity. You have her for eternity. Trust me.” And these thoughts have calmed my spirit and given me peace:
*I have her for eternity.
*I will give her life for God’s glory if He asks.
*She is HIS anyway.
*Abraham gave his son to God. God gave His Son for us. I will hold my daughter’s life with an open hand.
*My life’s purpose is to glorify God, not to keep my daughter.
*He will sustain me.
*I will be strong and courageous.
I remember how desperately I cried out to God that night, begging Him to let me keep Lucy. I think I knew then that God was not going to save her. Even though she survived the IUT the following day, she died eight days later while we watched on ultrasound. But that night when I begged for her life I sensed God asking me to place her in his arms. I look at those truths I wrote down five years ago and they give me courage to continue trusting God with this great loss. They give me courage to face the future without her. All of the days to come, without my sweet girl. I can do this, no matter how much I hate it. If I could be brave enough then to give my girl back to God, I can be brave today too. Because the truth is, it still takes an incredible amount of might to live each day without my child. It takes courage and grit and forgiveness and a whole lot of energy.
Three days before Lucy died I wrote this quote down by Charles Spurgeon:
Don’t you know that day dawns after night, showers displace drought, and spring and summer follow winter? Then, have hope! Hope forever, for God will not fail you.
Hope forever. As the days and the weeks and the years pass, more and more light slowly emerges. The dawn after our night. Today I can feel joy and contentment and I can sing again and I laugh freely most of the time. I go days and sometimes weeks without crying. None of these things seemed possible five years ago when I watched my baby’s heart stop and my world splintered. But God has been true to His word. When He promised me five years ago on that rainy, dreary day in that horrible hospital room, “I WILL REDEEM IT” He was telling the truth. He has been persistent in His quest to redeem the many things that died on February 8th, 2013 along with Lucy. And one day when I arrive in heaven, He will redeem the loss of my daughter and all of the missed moments with her here on earth. Yes, I will hope forever, for God will not fail me.
Three days after Lucy died when I was at one of the lowest points of my life I wrote this simple journal entry:
I TRUST HIM.
I trust you, Lord. Show me your goodness. Show me your hope. Show me what you are going to do with this sacrifice of pain and loss. Make her little life worth something….something so beautiful.
I TRUST YOU.
And now I get to show you the goodness and the hope, the beautiful thing God is doing with Lucy’s life. Because of my experience with her and because of this blog, I get to connect with parents from all over the world who are dealing with a sensitized pregnancy and help them advocate for the right care. You know, I invest in each one of my children’s lives daily; Liam, Asher, Nora and Callum. I don’t get to invest in Lucy’s life, so instead, I invest the time I would be spending with Lucy in these babies and their parents. My Facebook feed is full of pregnant bellies and ultrasound updates and newborn babies and pregnancy announcements…all the things that used to trigger my PTSD and send me spiraling. Now they are some of my greatest joys in life. Here are some of the beautiful babies who were impacted by Lucy and me over the past year. (There were so many babies that I couldn’t include each one’s story so I just included a couple and then the names and pictures of the rest of them.)
“My Kell baby Nancy, nearly 6 months old. She wouldn’t be here now if it wasn’t for your blog and the invaluable help of the Facebook group. The knowledge I gained from you helped me to ensure she had the best care, if I hadn’t fought so hard for more regular MCA scans she would have been so anaemic we would’ve lost her. I’m eternally grateful. Thinking of you and your precious Lucy xxx ❤️”
“After a shocking loss of our daughter in 2016 I was told I should never get pregnant again because my antibodies would cause another loss. Long story short, I found Bethany’s blog and the Facebook group which gave me hope again for future children. My rainbow baby Cameron was born this past summer and words can not describe how grateful I am for Bethany sharing Lucy’s story. If it wasn’t for her my son would not be here today. ❤️”
Isaiah
Gabriella Grace
Sloan
Alexander
Cole
Emmett
Maxwell Raymond “Bay”
Halle Ann
Nate
Timothy James
Baby M
Olivia
Crosby
Sawyer
Freddy and Max (and baby on the way)
Grace
Sylvie
Baby G
Ava Irene
Benjamin
Baby P
Baby H
Bennett
Oliver
Baby T
Sadie-Mae
Boone
Max
Layla
Callum Joseph Thomas
And for the babies who are not pictured here, but who are just as important as the ones who survived, you are greatly missed and deeply loved. The ones who don’t come home from the hospital in their mamas’ arms, like Nancy Stella and Freya Louise and Connor James and all of the precious babies who were lost, these babies often have a greater impact on my life than the ones who lived. I feel great comfort knowing Lucy has such amazing little friends in heaven with her.
Happy birthday in heaven, Lucy Dair. I ache for you every day. I see all the empty spaces where you should be. Five years closer to having you forever. I love you and I’m so proud to be your mommy.
I have had this blog post mostly written and sitting in my draft folder for months now, waiting to be published. It weighs on me and I think about it often, rewriting certain sentences in my mind, adding and editing mentally while I go about my tasks during the day. Mostly, I want the whole post to be saturated with forgiveness and grace, but also truth. The doctors I write about are real people, and I don’t want to attack their character or publicly shame them for mistakes they made. What if blog posts were written about me every time I made a mistake? What if I had a job where my actions had life or death consequences? That would be so difficult. And these doctors have done some truly wonderful things for me, like the amniocentesis and pushing the insurance company to cover treatments during my pregnancy with Nora (before transferring to Dr. Moise.) But truth is incredibly important and I feel deep in my heart that lives could be at risk if I don’t share the truth. I feel a heavy responsibility to protect families from experiencing what our family has experienced. I have forgiven the doctors at UAB for their mistakes. I forgive them over and over again when my heart breaks yet again for my girl and I forgive them again when I run through the events leading up to her death for the hundredth time. The one person I struggle to forgive the most is myself. As a mother it is my job to protect my children and I feel like I failed Lucy in the worst way, even though I really did try my best at the time to save her. I just didn’t understand the disorder enough back then. I was confused and scared and scrambling around grasping for information about anti-Kell antibodies (which was very hard to find.) I didn’t know the treatment options available or the proper monitoring protocols. I thought I could trust my MFM specialists to know all of these things and I placed my daughter’s life in their hands. There was so much I didn’t know when I was pregnant with Lucy in 2013. But I know now, and I cannot quietly sit by and leave other babies to Lucy’s fate. Hopefully I can spread the word and get the right information out there to protect families in Alabama dealing with alloimmunization and HDFN.
A couple of weeks before I gave birth to Callum, I finally had my follow up appointment with the MFMs at UAB hospital to discuss what happened with Lucy. After Lucy was stillborn, I scheduled a preconception appointment at UAB to discuss everything that happened during the pregnancy and her autopsy results, placenta analysis and blood work results. One of the head MFMs called me a few weeks after Lucy died and said he thought I had had a fetal maternal hemorrhage and that was the reason we lost Lucy, not just the anti-Kell antibodies. He said there was no reason for me to have the follow up appointment and he encouraged me to cancel it. I was ecstatic that my antibodies weren’t necessarily to blame for Lucy’s death (supposedly) and I canceled the appointment like he suggested. This meant that I never got to discuss what happened during my pregnancy with Lucy or go over the decisions that the MFMs made. No one was held accountable. I had no idea if they learned anything from my experience. It haunted me over the years and the questions I had for the doctors just bounced around in my brain that whole time, unanswered.
UAB is good at many things, and even the MFMs at UAB might be great at treating common pregnancy complications. But when it comes to maternal alloimmunization their protocols are out of date, possibly putting unborn babies at risk. They start MCA scans (the special ultrasound that checks baby for anemia) at around 22 weeks even with patients who have critical titers. This was their plan for Lucy, even though my Kell titer was 1,024 (critical titer was 8 at the time.) I asked them many times during my pregnancy to do an MCA scan to make sure Lucy wasn’t anemic. They refused over and over again. It is a non-invasive, quick ultrasound and it is the only noninvasive way to check the baby for anemia. Even while they were doing a level II ultrasound at 16 weeks, spending an hour with the ultrasound wand on my belly, when I asked them to please do the MCA scan to see if she was anemic they wouldn’t do it and they missed the anemia that day because of it. The day after I gave birth to my lifeless daughter, I asked Dr. O if they would change their protocols and start scanning women with critical titers sooner now because they saw what happened to Lucy. He said, “We don’t change protocols just because of one baby.” Naively, I still thought that surely they would have learned to be more cautious when treating other alloimmunized women because of what happened with Lucy. That was one of the only thoughts that gave me comfort after Lucy died. Maybe other babies would be saved because of Lucy. But about a year or two ago I was contacted by another Kell mama in Alabama, and I encouraged and helped her through her pregnancy. To my horror, even though her titer was well over critical, the MFMs at UAB told her she would have her first MCA scan sometime between 20-24 weeks. It was apparent from her experiences with them that they had changed nothing after losing Lucy. After realizing that, I knew I had to meet with them to discuss everything that happened with Lucy and urge them to treat this disorder more seriously. If they had updated their care practices after Lucy died, I would not have felt compelled to have this meeting with them. By the way, women with critical titers are supposed to have their first MCA scan between 16-18 weeks to make sure the fetal anemia is caught in time to treat. Nora had her first MCA scan at 15 weeks and Callum had his first MCA scan at 14 weeks. Fetal anemia is only treatable if it is detected.
So, I met with the head of the MFM department, Dr. D and one of the main MFMs who handled my pregnancy with Lucy (Dr. O) a couple of weeks before giving birth to Callum. I really appreciated them agreeing to this appointment since it had been over four years since Lucy died. I can only imagine how many patients they had treated in the previous four years, so I’m actually surprised that they remembered anything from my pregnancy (and maybe they couldn’t remember everything which is why some responses were so vague?)
I know it must have seemed strange to them that I would want to come in four and a half years after losing my baby to discuss what happened. They were polite and respectful and I know it was probably hard to do that during this conversation. The one thing I appreciate most is that Dr. O referred to my daughter as Lucy. He didn’t call her “the baby” or “fetus” he called her Lucy and that meant the world to me. I wish other people in my life would just call her Lucy and say her name like they say my other children’s names. It was unexpectedly refreshing and I appreciate him doing that for me.
Unfortunately, I left the appointment feeling discouraged, disappointed and depressed, but also more determined than ever to keep fighting for babies like Lucy, Nora and Callum. Where do I even start? The doctors did not take any responsibility for what happened to Lucy. Many of my questions were not answered in the way I hoped they would be; some weren’t answered at all. I was hoping that the doctors had actual medical reasons for the choices they made regarding my treatment. I think that would have given me some peace. For example, when I asked, “Why did you wait a whole week to scan Lucy after the IUT, especially since her hematocrit was 6?” Pause….”Well, that’s just what we do.” Another example, “When I didn’t feel Lucy move again after the IUT and I came into labor and delivery a few days later, why wouldn’t you do an MCA scan to check her for anemia even though I asked over and over again for one? Why was I sent home? She was dying.” They said something about MCA scans possibly being inaccurate after an IUT, but they didn’t know why I was sent home. They just didn’t have an answer. If they had listened when I insisted something wasn’t right and she wasn’t moving, and checked her anemia levels then they possibly could have saved her.
When I asked, “In the past four years since Lucy died, what has UAB done to ensure that this doesn’t happen to another baby?” They couldn’t tell me. I was given a vague response about how what happened to Lucy was very rare and most women don’t have a titer as high as mine. I talked about how when I came back with my second Kell pregnancy, the MFM told me I should just hope that the baby was Kell negative and to come back at 16 weeks for an amniocentesis. I showed them a picture of Nora and said that if I had trusted their expertise and gone with their treatment plan, she would be dead today. They had nothing to say, except, “Well, maybe she would have survived without the plasmapheresis and IVIG? We don’t know for sure.” “But you were willing to take that risk with my daughter’s life, even after seeing what happened with Lucy?” Silence.
Both doctors remained determined to stick with their MCA start time of about 22 weeks for women with critical titers. I tried explaining that a lot of babies would not be alive by 22 weeks if they waited that long before being checked for anemia, but they disagreed. They said there are no specific guidelines set by ACOG saying when doctors HAVE to start MCA scans so they usually go case by case and decide when to scan based on each specific woman and her history. I explained that this is exactly what terrifies me since with my specific case, they saw that I had a Kell titer of 1,024 and decided that the best course of action would be to start scans around 22 weeks. One doctor spoke up, “Well we have learned since treating you that sometimes even in first sensitized pregnancies, babies can be affected earlier than 22 weeks if the titer is very high and the woman has anti-Kell.” So I asked him if a woman came in today with my exact situation, (first sensitized pregnancy, anti-Kell titer of 1,024) what would the treatment plan look like? The doctor said they would not suggest plasmapheresis and IVIG (the treatments that saved Nora and Callum’s lives) but “now, we would suggest starting MCA scans as early as 18-20 weeks.” This is the most ridiculous thing since Lucy died because they caught the anemia too late, even with a scan (that I basically forced them to do) at 17 weeks and 6 days.
I won’t go through all of my specific questions and their answers. I think the most unsettling thing about the whole appointment was how nonchalant they seemed about it all. I tried to convey, somehow, with my inadequate words how important Lucy was to us, and how their choices had impacted our family forever. I told them I would have rather died than have to live without her. I would have gladly taken her place if I had been given the chance. How could I explain how precious my baby girl is to me? I just sobbed. My mom told them that people trust UAB, we trusted UAB with our baby, and they need to take that responsibility seriously. I told them they had so many chances to save Lucy and they let her down over and over again. They said nothing. No apology, no promise to protect other babies, no real change. I’m guessing they decided beforehand not to admit to any wrongdoing during our conversation and they clung to that fiercely.
When I said it seems like UAB tries to do the least amount of monitoring possible, instead of being extra cautious with these little lives, they did not deny it. When I said, “Many women ask me for MFM recommendations in Alabama. Some ask specifically if I could recommend UAB. I always wish that I could recommend UAB but as far as I know, I can’t because I don’t think their babies would be safe here. When they ask me if they should go to UAB for treatment, what should I tell them?” Silence…and a shrug of the shoulders. Right at the end of the appointment when we were getting up to leave, Dr. O did say that Lucy was important to them and she had affected them in some ways. He just couldn’t tell me how they have improved and I haven’t seen any evidence of that. One thing he did agreed to do was scan a woman with a critical titer before 22 weeks if she specifically asked for and insisted on the MCA scan. But how is a woman supposed to know she has to request this type of scan in order for her baby to receive the right monitoring? The MFMs are the ones who should be providing the right care even if a mother doesn’t insist on the specific tests by name. I told them that many hospitals all over the world start MCA scans by 18 weeks for women with critical titers. Dr. O asked which ones but I didn’t have the names of the actual hospitals on hand. He said if I gave him a list of other hospitals and practices that start MCA scans by 18 weeks then he would consider changing their policy. I promised him that I would.
I went in to this appointment giving these MFMs the benefit of the doubt. I was hopeful that maybe I had just projected my grief of losing my daughter onto them and that is why I thought they had given us such inadequate care, but they only confirmed what I had thought. They do treat alloimmunization/HDFN with nonchalance and they are resistant to change, even if it means babies might die.
Here is my warning: If you are pregnant and you live in Alabama and you found out that you have tested positive for anti-Kell antibodies, or anti-D antibodies, anti-c, anti-E, anti-jka, etc. do not trust UAB to protect your baby’s life. From my experience and my observations, I can only conclude that they will not provide adequate monitoring or treatment and your child will be in danger under their care.
From my experience, the best care for women facing alloimmunization can be found outside of the state of Alabama. Dr. Thomas Trevett in Atlanta is amazing and so is Dr. Ken Moise in Houston. Those are my two recommendations if you want phenomenal care for you and your child. It is so worth the drive. I’m sure there are also other MFMs out of state who know how to properly treat alloimmunization/HDFN.
It sounds ridiculously dramatic, but as I left that appointment at UAB, I had the very real sense that I was walking out of a dangerous place, and I wanted to run to get away. I placed my hands on my swollen belly with my healthy kicking baby boy inside and thanked God that my son was safe. I left that appointment in awe of Dr. Trevett and Dr. Moise, wishing I could hug them and express my deep gratitude for them. I think that was the moment that I knew Callum’s middle names would be Joseph, after Dr. Moise and Thomas, after Dr. Trevett. They respect the trust that we put in them to protect our children. They take every step possible to provide the best monitoring and treatment for their patients. They truly care about our babies. I am so glad I left Alabama for Nora and Callum, and I am devastated all over again that I stayed at UAB with my precious Lucy. I just had no idea. What I would give to reverse time and leave the state for better care during my pregnancy with Lucy.
A couple of months after my appointment at UAB, I sent Dr. D and Dr. O a list of 57 different hospitals and medical practices around the world that start MCA scans by 18 weeks, including a real life example of a woman treated at each hospital. I included the patient’s initials, her antibody, her titer and when they performed her first MCA scan. Dr. D replied,
“Thank you for your continued interest and info. We are in the process of rewriting our guidelines and plan to evaluate MCA doppler in the second trimester (16 -18 weeks) in appropriate patients. I’ll let you know our final pathway.”
This felt very promising! I still have not heard back from them, but if they decide to update their protocols I will definitely come back and update this blog post with their improvements. Until then, I strongly urge you to skip UAB hospital if you are dealing with alloimmunization during pregnancy and find an MFM who will treat your pregnancy with caution and expertise. Or, you could have your basic scans done at UAB and have a more experienced MFM (such as Dr. Trevett) on standby to perform any IUTs needed during the pregnancy. With a little urging, the MFMs at UAB will collaborate with other MFMs for your care.
One last thought: When I left my appointment I felt so incredibly defeated. My grief over my daughter’s death just swamped me like a big wave. It felt like she meant nothing to them, like her life was worthless. It gutted me all over again to think that her death was preventable if only I had known then what I know now. And the fact that the people who should have saved her but didn’t, had just denied their role in her death made it hurt even worse. But that morning before my appointment my mom had shared this verse with me-
Lamentations 3:57-59 You came near when I called on you; you said, “Do not fear!” You have taken up my cause, O Lord, you have redeemed my life. You have seen the wrong done to me, O Lord; judge my cause.”
And that verse came to mind as I drove away from UAB hospital. None of this was out of God’s control. UAB might have failed my daughter but God did not. Even though I can’t trust UAB, I can absolutely trust God. And even if my daughter’s worth was lost on those doctors, she was intricately woven together by the Creator of the universe and He treasures her. God desperately loves Lucy even more than I love her and that gives me peace. And the injustice done to Lucy and me? God sees the wrong done to us and He will judge our cause. I cannot force them to see Lucy’s worth or to be accountable for their actions but I can hopefully protect other babies in Alabama from experiencing what I went through.
Oh my baby, how I miss you. Every day, every minute for these past four years I have ached for you. That chamber of my heart that is only Lucy shaped remains empty. I know how your biggest brother Liam feels in my arms, how your big brother Asher feels in my arms and how your baby sister Nora feels in my arms, but I don’t know how you feel and my arms ache for you. A mama’s arms belong around her babies. I wish you could be here to play with your little sister Nora, you would love her so much. Your absence in our family is felt every single day. I see the space where you should be that nobody else sees. I miss you.
I miss you.
It has been four years since Lucy’s heart stopped and mine was irreparably broken. It is a feat, surviving four whole years without your child. I feel like I should be awarded a medal just for still being here, four years later, without her. The beautiful thing about living this life with my God is that He has more for us on this earth than just surviving. The past four years have been the saddest and most difficult of my entire life, but they have also been the most beautiful, the most redemptive, and the most productive years of my life.
As most of you know, when Lucy died I was told I could not have any more babies. It felt like an extra cruel blow because of who God had created me to be. He made me very maternal from infancy. I have always been obsessed with babies. They were the best thing in the world to me. My undergraduate degree is in Early Childhood Education. I was told that a degree in Elementary Education would be more useful so I eventually agreed to go one more semester to also get my Elementary Ed degree, but all I really cared about was getting that Early Childhood degree because I just wanted to teach the babies. My whole life I waited and dreamed about having a baby of my own. I wanted to fast forward time until I held my baby in my arms for the first time. My greatest wish for my life was to have a big family; LOTS of babies. For God to allow my baby to die and then to leave me with a pregnancy condition that would repeat itself and make my pregnancies “fatal” seemed so cruel. It felt like a custom made attack, designed to destroy the most beloved part of who I was.
I couldn’t even look at babies after Lucy died, they physically nauseated me. During my counseling sessions I had therapy for PTSD and had to work through the most terrifying scenarios like, “You’re at the grocery store and suddenly a woman comes around the corner carrying a baby, what do you do?” I remember being on a flight only a couple months after losing Lucy and there was a baby next to me on the airplane. I felt like I was going to have a panic attack. Every sound she made caused a physical pain in my chest. I could not believe how agonizing this adorable baby next to me was. My pain originated from my deep love for babies, especially my love for my baby girl who had been killed by my own body, and the love I had for my future babies who would never exist because of anti-kell antibodies. Every baby I saw reminded me of my dead dreams for my family and my dead daughter. And if I’m truly honest, they represented the lie that for some reason God loved those other parents more than He loved me because their babies were alive. The parents of the baby next to me on the airplane seemed to sense my discomfort. They probably thought I was just one of those adults who gets irritated with loud babies on planes. If only they knew the truth.
If only I knew the truth, that God was not using my tragedies as a custom made weapon to destroy me. God was going to take my little Lucy’s life and my tragedies and He was going to fashion them into a custom made ministry just for me. And guess who God has me ministering to now? Women and their BABIES. Beautiful babies who are possibly in danger like Lucy was. Babies in Pakistan, babies in Canada, babies in Australia and Egypt, babies in the UK and the US, babies in Germany and Israel, Cambodia, Switzerland, Russia, France and even babies right here in Alabama. I get to help babies every single day and it is some of the most rewarding work I have ever done. I get to encourage and empower women who have babies in the womb, women who have babies in heaven, women with babies waiting in their future, women with newborns and women with broken hearts. I love these women, and I desperately love their babies. God uses every single one of these parents who reaches out to me and He uses every single baby to restore a small piece of my broken heart and to restore my hope in Him.
Here I am four years later, and now I am able to look at a baby and see redemption, hope and the greatness of God. Oh the redemption that God has brought through these babies and their moms!
And so, without any more delay, here are some of the beautiful babies that have been helped through Lucy’s story and my blog. Thank you Jesus, for each one of these lives that has been touched by my Lucy’s.
COOPER
CLAIRE
EVA
JESSA JADE
TYLER
JACOB
KRISTIAN (in heaven with Lucy) and MIKAH
JULIA JOY
SAGE (in heaven with Lucy)
KETHRYN
ROSE with big brother and sister Logan and Haven
SHUA, ARI and MOSELLE
LIAM
ELLIE
MILA
MATILDA
LUCY ANNE
GABRIELLA GRACE
OSCAR
WESLEY JAMES
SKYLAR ROSE
AVA
BRIANA ANNE
LANGSTON
OWEN BLAKE (being born right now, on Lucy’s birthday!)
HADRIAN
BABY BOY ROBILLIARD
ASAIAH
NYAH
And of course, NORA JULIET who would not be here if it weren’t for Lucy
And this is baby Hudson, whose mom did not come across my blog until a few days after her son was stillborn this past December. This is why I push so hard to get Lucy’s story out into the world, because Hudson would be here today if only the doctors had provided the right monitoring and treatment. Lucy would probably be here today if she had been given the correct monitoring and treatment too. I will keep telling our story and fighting for the Hudsons and the Lucys who deserve to be here with us.
“I wish I had read your blog whilst pregnant because I would have had the knowledge I have now and possibly could have saved my baby Hudson who was born sleeping on 29th December 2016 due to Anti-K antibodies and having no close monitoring – I was totally unaware of what most of it all meant until I read your blog.”
HUDSON
The love I feel for these babies is unreal. The very tragedy I thought would push babies out of my life has brought so many babies into my life that I have a deep affection for. They are my “yes” from God.
For anyone who feels like God has turned His back on you, for anyone who has suffered unimaginable loss and for those whose lives have not turned out the way they planned, just decide to trust God anyway. Because I am convinced that when there is great loss combined with great trust in God, miraculous things happen. Yes, even a one pound baby girl who never took a breath outside of the womb can leave a legacy that reaches throughout the world.
Happy fourth birthday in heaven, Lucy Dair. I am proud to be your mama. You were worth it all. Four years closer to having you forever. Despite all the pain and agony of waiting to have you, I absolutely love being your mama.
“Mommy, do you want to die in an explosion so you can go to heaven and see Lucy?” Five year old Asher caught me completely off guard with his question. I wasn’t sure if I wanted to laugh or cry but his face was earnest and he really wanted to know. I told him I didn’t want to die in an explosion but I was excited about being with Lucy one day when I do eventually get to heaven.
Lucy’s death had such an immediate, violent impact on my life but the rippling effects are really hitting the boys now. Liam and Asher are suddenly old enough to comprehend that their little sister is dead and it is heartbreaking to watch them work it out in their minds. The boys are so obsessed with Nora and they love having their baby sister with them. I think they are just now understanding all of the beauty and wonder and love that they are missing without Lucy here. I found this drawing at the bottom of Liam’s backpack the other day.
I asked him about it and he said it was a bad guy freezing the whole world and all the people died but Lucy (who is the tiny dot in the upper left hand corner) survived. Lucy survived. Our ultimate fantasy scenario. Liam also told me yesterday, “Mommy, I’m sad about a daydream I had where all the babies are trying to be alive, like all the babies in their mom’s bellies, and the ones who don’t win die but only the winner gets to be alive.” The boys have asked us about having another baby and we told them that if I had another baby in my belly we don’t know if that baby would live like Nora or die and go to heaven like Lucy. Asher asked me today how old Lucy is and I told him she is about 2, almost 3 years old. I hesitated, though, because I honestly don’t know how aging works in heaven. Would Lucy grow up, year by year like she would here? Or is she still a newborn waiting for me to get there so I can watch her grow up? Or is she an adult? If she were here on earth she would be turning 3 years old this summer. She would be exactly two years older than Nora, just like Liam is two years older than Asher. The boys always have a combination birthday party in February/March and I know Lucy and Nora would have had a combination birthday party every July. I hate that Nora doesn’t have her big sister here with her. Such a huge loss. The boys are so sad that Lucy isn’t here with them. Asher asked what she looks like now and I had to tell him I wasn’t sure. He looked so sad and asked if she looked just like Nora but had a different name and I told him I didn’t know. He said he wanted to be in an explosion so that he could go see what Lucy looks like. I know some of these thoughts seem morbid, but they are just a peek into five year old and seven year old minds trying to understand death. I hate that death is such a big part of our family and part of the boys’ childhoods.
Asher always includes Lucy in our family. He was very wounded this past Christmas when I didn’t hang a stocking up for Lucy. I promised him that next year we will hang a stocking up for both of his sisters. This is his latest family drawing:
He is holding Nora and up in the sky is Lucy in her mansion in heaven. She is looking out of the window at us. He insisted that I hang the picture up on the wall above Nora’s crib because he drew it for her. Oh how my heart hurts when I think about telling Nora one day that she has a sister that she will never get to meet until she gets to heaven. Watching the boys deal with Lucy’s death now, three years later, is a reminder that this terrible tragedy that happened to us in 2013 isn’t just over, even though we are continuing to heal. The harsh reality is that the tragedy continues and the ripples continue to bruise us, to cut into our hearts, to reopen old wounds. There are facets of our loss, our life without Lucy, that have yet to impact us. One day when Nora gets older she will wish she had someone to play My Little Ponies with; a sister to tell secrets to and do each others hair and share clothes with.
It is hard to go through life without such a vital part of our family. It is hard for siblings to comprehend their sister being dead. Their sister will never be a part of our family here in the flesh. But goodness, she makes heaven so much sweeter and more tangible. When Asher builds things with Legos he often constructs a scenario here on earth and then one in heaven too. “Mommy, these guys are in their house having a meeting and this guy is in heaven.” Thanks to Lucy, heaven is a very real place to us. She has gifted us with an eternal perspective on life and a joyful anticipation of heaven. I used to dread the end of my life on earth. I feared death. It made me feel anxious and panicky. Now, I look forward to it; not in a suicidal way, but in a very sweet, excited way. I feel peace about dying and I can’t wait to get to heaven. The boys are excited about heaven too and they look forward to meeting their little sister and seeing the mansion that she lives in.
The rippling effect of our loss and heartache will continue to hit us throughout our lives. I know one day when all the 2013 babies start kindergarten I will have an intense ache in my heart…and when they graduate and when I know she should be in college and when I see a beautiful bride her age walk down the aisle and when I meet my grandchildren but none of them are Lucy’s…I will continue to be wounded again and again and so will her Daddy. As her brothers grow and understand more and more about this great gaping hole in our family, they will continue to be bruised as well. BUT these destructive ripples are confined to this earth. They will not follow us to heaven. They are harmless in light of eternity, and that is why I look forward to heaven so much. I just can’t wait to see my first girl and to see all of my children under one roof.
PSALM 22:10 WHEN I LEFT THE WOMB YOU CRADLED ME; SINCE THE MOMENT OF BIRTH YOU’VE BEEN MY GOD.
Three years have passed since my baby Lucy went to heaven. It always seems a bit ironic to me that the worst day of my life was the best day of Lucy’s life. Since I haven’t experienced heaven yet myself, this is just a theory, but I imagine that for all of the citizens of heaven, the best day of their entire lives was the day they arrived. That was the day that their pain was erased, their bodies were healed, their sadness replaced with joy, their losses redeemed and their fear completely swallowed up by Love. From the slum to paradise. Such a sharp contrast. I’m trying to be happy for my baby today, but my heart aches from such a long separation. This day always brings back devastating memories of how she died and what we all went through on that day. A friend of mine recently lost her two year old daughter to cancer. She told me that some of the hardest daily things to deal with are the flashbacks. I know she didn’t mean that to be encouraging, she was just telling me how she was doing, but it has encouraged me so much. It reminded me that Lucy died ONCE. She experienced severe anemia, fetal hydrops, heart damage and death ONE TIME. It’s over and she is experiencing pure peace and joy right now. But over the past three years I have experienced her death over and over and over again in my head. Just the other night at Chickfila I saw a woman who had been pregnant the same time I was pregnant with Lucy. When I saw her healthy two year old run onto the playground it triggered so many terrible flashbacks and feelings. While she enjoyed watching her son play on the playground I saw Lucy dying all over again. I felt like my insides were being washed with the heaviest sadness that still lingers, several days later. But it is comforting to remember that the flashbacks are just flashbacks. No matter how real and painful they are to me, they are not happening to Lucy. She only experienced it ONCE and she will never experience it again. I’m clinging to that truth today. She is safe.
When I was pregnant with Nora several people warned me that going from two to three kids was a hard transition. But the truth is, I already went from two to three kids in 2013. When Lucy died she didn’t stop being my daughter and I didn’t stop being her mother. The most agonizing transition for me was going from having all of my children under one roof to having one in heaven. Even though Lucy lives in heaven, I have been parenting her these last three years, and it’s the hardest thing I’ve ever done in my life. I parent Lucy in a completely different way than I parent Liam, Asher and Nora.
What does it look like to parent a child who lives in heaven? For me, it means I grieve my daughter well. I acknowledge her life and her absence instead of pretending that she never existed. Even though her milestones are different from her brothers’ and sister’s, I celebrate them just like I celebrate my other children’s milestones. I appreciate life more and I empathize with others who are grieving. I allow Lucy to continue impacting the world through me. I ask God to use my pain and my loss for good. I try to honor Lucy by using her life and death to help other people. One way that God has been able to do this is through my blog. I never would have started this blog if it weren’t for Lucy, obviously. I wrote my first blog post shortly after we lost her and thought, “There is NO WAY I can share this private, painful part of my life with the world.” But God (and some faithful friends) urged me on. When I clicked “Publish” for the first time I literally felt like I was going to throw up, I was so nervous. I don’t enjoy being the center of attention, it makes me extremely uncomfortable. But isn’t that just part of being a parent? Doing hard things and sacrificing our own comfort for our children? Yes, I decided I could do that for Lucy and for God. And through this blog I have been able to let my little Lucy light shine. I am so proud of my baby girl. She only spent 20 weeks in the womb but she continues to impact the world even three years later. Did you know that because of Lucy, other babies have been saved? Broken hearts have been comforted and those who are weary have been encouraged to hope.
Today I want to brag about my baby Lucy. I get to show off my three earth children every day, whether it’s pictures on Facebook, smiling proudly when we are out in public together, telling their Daddy about something cute they did or celebrating their lives at their birthday parties every year. I wish I had better pictures of her but I didn’t have a camera with me at the time and I was in shock. I only took a few quick pictures with my cell phone. Here is my sweet, one pound Lucy.
Only one pound but she touched so many lives. I want to share with all of you some of the stories from people she has helped, like baby Mack. Mack’s older sister died after being attacked in the womb by antibodies, like Lucy. His mom, Tiffany, found my blog and reached out to me when she was pregnant with her rainbow baby. I was able to get her the information she needed to fight for her baby Mack and I was able to connect her to the Facebook support group where she received even more support. Mack almost lost his life like his sister but he made it and is now completely over the antibodies and doing great!
When I see babies like Mack it brings me so much joy. I get to watch God bring good out of my worst nightmare. Here are some other people who have been impacted by Lucy:
I learned about Kell with my first pregnancy but she wasn’t affected by it. When I got pregnant with my second child, I had a very strong feeling that she or he would be affected. I just had an intuition. Everyone told me NOT to search the Internet about this disease and that everything on the Internet would scare me. Every night I searched and searched trying to find some answers on what anti Kell was exactly because even my Drs didn’t have clear answers. Either way, I knew it was a scary thing. I searched high and low….I just wanted to find someone else who knew what I was going through. Even my own husband wasn’t interested in learning more about it. I felt very alone. Finally I came across a blog a about a little angel named Lucy and her mother Bethany who had these Kell antibodies as well. As I read more and more I had to find Bethany and ask her questions….I searched her name on Facebook and wasn’t sure if it was the correct Bethany, but I thought let me message her – what have I got to lose. A few weeks later, I got a message back after she found me in her “others folder”. We both realized we were a week apart in our pregnancies and we’re both having girls. She told me about a private Facebook group that was filled with other mothers who had the same antibodies and issues that we both faced. I couldn’t believe it! I was so happy!
Throughout my pregnancy my family, friends, Drs said to stay away from the group because it will scare me or seeing depressing stuff would be bad. It did the EXACT opposite of that. These girls and Bethany in particular saved me, saved my sanity, and saved my daughter! I was so grateful to go through my pregnancy with people who understood ! I didn’t share my pregnancy with most people in my life because I wasn’t ready to explain the problems and complications I was going to have. My daughter was born 6 weeks early and needed 2 post birth transfusions after having 3 in utero. The antibody moms were there for me no matter what! I still pray for each of them and their babies every single day! Thank God for Lucy leading me to this group! Here’s a picture of me and my ISO baby- she is now a healthy 7 month old.- Amy Dell Koch
For me, Bethany, you were MY savior during the most difficult part of my life. You helped me grieve and you also helped me feel not alone and not weird. I honestly don’t think I could have made it through some of my darkest days if it weren’t for you standing by (with an email). My husband always mentions you. I always felt that my Grace and your Lucy must be up there – watching over our pregnancies and our miracle babies. I am so thankful for what you did for me. I hope in some small way I have been there for you too. ~Callista Puchmeyer
You don’t know me (I live in Saskatchewan, Canada), but I stumbled on your blog a couple of years ago, when I lost my son, Elijah (June 22, 2013). I was 18 weeks pregnant. We don’t know for sure why he died, but we discovered last year that I have a uterine abnormality, called a partial uterine septum. It is essentially extra tissue at the top of the uterus that doesn’t have good blood flow. If that baby implants there, they can experience growth restriction, the placenta may not be receiving enough blood/nutrients etc., and eventually it can lead to death, preterm labour, or placental abruption. The suspicion is that that is what happened with Elijah. I just had the surgery to fix my uterus earlier this month, so hopefully someday in the future we will have a “take home baby” of our own. I long to have a pregnancy that ends in the birth of a healthy crying baby, instead of silence and grief. It has been a long, painful road of missing Elijah, struggling with infertility, struggling with anger and resentment, and struggling to be the lone infertile/childless couple in a very fertile church family and community.
So even though I don’t have a antibody problem, it was wonderful to me to stumble on a blog where someone else was voicing all the hurts and prayers that I myself was expressing…especially when I felt so isolated and alone. Even my close Christian friends didn’t really understand how the grief of a child gone to heaven could influence every part of my life for years to come. Even though many would agree that “a unborn baby is still a baby”, I don’t think (even Christian) society REALLY views it as being the same/similar to losing a child who was born alive, unless they experience it themselves. So people expect you to get better much more quickly, put your grief behind you, and so on. And I couldn’t. I still think of Elijah every day, many times a day. All the important date anniversary’s are hard, certain months of the year are hard, holidays are hard. Of course I feel much more joy in my life these days; I am not depressed any longer. I enjoy life. But I lost my Dad when I was 16, and my grief for Elijah is just as strong and has permanently changed who I am as a person. So many people don’t understand that! I really struggled with God (and still do at times) over this loss and our infertility, and I don’t usually feel free to express that out loud, because I feel like people are sort of like “still? Maybe you should see a doctor if you are still hung up on that?!” Ultimately my faith was strengthened through our experiences, as yours was.
Anyway, what I’m getting at in all that rambling, is that it really helped to read about how you also struggled with your faith, with the ‘why’s” and with continuing to miss Lucy and your other babies, even though you didn’t get a chance to know them. I was thankful for the scripture you quoted, and for seeing the process you worked through, and that God was working IN you, through all of it. It really helped. I check back on your blog often, to read about how you are making out with your dear Nora. 🙂 So happy for you guys! God is great. Even in the dark times.
So yes, Lucy definitely touched my life, and so did you! Absolutely. Many tears were shed over your blog, for you and also for our own situation. You are a blessing to me. 🙂 Thank you!
~Katie
Lucy’s story was the only thing I could find 3 years ago when I got pregnant with my first iso baby. That’s where all of my research started and eventually led me to the Facebook group so for that I’ll always be grateful! Even though I’m not as educated in this subject as other mamas anytime I find anyone who has been sensitized the first place I send them is to read your story so they can see that it can get bad but there is hope! And this is my baby Dante he is my kell+ baby and even though we didn’t need any intervention during pregnancy he has been affected since birth. He is 4 weeks now but still having problems with his bili levels. He is also off of oxygen and just starting to grow out of his newborn clothes and diapers! ~Nancy Mendoza
I am not sure how I stumbled across your blog but I have been very touched by your story and your faith. I am very sorry for the loss of your precious daughter but am glad you have your three living children to dote on in this life. ~Vivian
I only wish I’d found you before Joey was born! You’ve helped me so much you’ll never know. To finally have found others who 100% understand what we went through is such a nice thing to come from something awful.
Here’s my anti-kell ‘baby’ dressed up as a Box Troll! ~Alison Brooks
Your words on the blog got me through some tough days dealing with kell. I’m so grateful God used your story to help others. It’s been a blessing to see Nora’s story now that came out of Lucy’s life. Thank you for giving us all hope! ~Adria Whelan
I don’t have a picture for you to share but I am so thankful for finding your blog as we begin our journey with anti-Kell! You have been such a great resource for me already!!! ~Nicole Gunderson
Greenleigh is due June 13, 2016. When I found out I was anti-k I came across your blog which led me to this group. It was nice knowing I wasn’t the only one in this situation and hearing all the possibilities of what could happen, both good and bad but especially the good because it gave hope. My first born is K positive but has a different father and my second child is negative since her father is negative and none of our future babies will be at risk thankfully. The hospital even mailed me a card to carry saying I’m anti-k in case I ever need a blood transfusion which is nice since that can be dangerous. You guys taught me a lot so when we didn’t have our answers it kept me positive and hopeful. ~MaKayla Price
Your blog is so amazing in so many ways! I felt so alone when I found out about KELL and I actually had nurses who told me to google the story of baby Lucy. After I lost Julia you were there for me and could relate and I’m grateful to you! I know our baby girls are playing up in heaven together! Happy birthday Lucy! ~Susan Marie
We were so blessed when we found your blog. We referred to you as Lucy’s mom in normal conversation at the supper table, with our coworkers and even with our Drs. Who knows what would have happened to our miracle Madon if we wouldn’t have found you. We can never thank you enough. ~Jillian Huber
I’ve been reading your blog for over a year now. I first stumbled upon it after I had a miscarriage at 9 weeks on August 26, 2014. At the time I was feeling devastated (my husband and I had been trying for a while to get pregnant with our second), and your raw honesty really encouraged me through a very dark time. One thing I really appreciated about your posts was that I felt like you understood (through all of the stories you shared from others) that all pregnancy loss is difficult, whether it’s at 6 weeks or full term. The thing I heard the most from people after my miscarriage was that it was so common, which made me feel like my loss didn’t matter because so many women experience it. Reading your blog helped me to see that other women were just as devastated, but that there was hope to try again. The other area where you encouraged me was that you already had 2 children, and yet you really grieved over Lucy. Another insensitive comment from people was that I just needed to focus on my other daughter, when in reality I needed to focus on the one that I lost in order to grieve in a healthy way. Now, over a year later, I have my rainbow baby (born on August 28th, 2015). What a beautiful gift from God, but I do know that not everyone’s stories end so happily. I just wanted you to know that your strength through your many challenges (to put it lightly) has inspired me to keep going through my own.
~Vanya
I found Bethany through the Facebook group. I had already been through 1 ISO pregnancy, resulting in my beautiful baby Shea. Luckily I found the group shortly after becoming pregnant with my second. I thought that after all that I dealt with having Shea. Induced at 37 weeks, a stay in NICU, phototherapy, not beng able to hold my new baby was bad. I was upset and it took time to learn how to deal with what happened. I was blind-sided at 30 weeks to discover that I had this antibody issue. Little did I know that that was absolutely easy (not nothing, as every journey has its challenges) compared to what I went through to get our second Rory here. I knew I wanted to try to have another after Shea but was terrified. Rory was a fighter from the start, he is 2 months younger than Nora. While I am blessed never to have a loss like Bethany went through with Lucy, I absolutely understand how these horrible events can happen to us antibody mums. Bethany’s pregnancy with Nora was similar to mine with Rory. She went through the IUTs and delivered before me and I used it as an inspiration of what was to come. I remember vividly reading the post of Nora’s birth story to myself and crying in fear and joy. I later read it to my husband with the same result. Rory arrived on September 25th, 2015. My warrior baby. Even his delivery was similar to Bethany’s with Nora. Scary for a while then quick, fast and I can’t believe this beautiful baby is here in my arms!!!! I had so many dark days, sleepless nights, times when I could not control my emotions or tears. Thank you Bethany for going on this journey with me and Rory. Thank you for sharing both Lucy and Nora with us. Thank you for being so open about your struggle and journey. Thank you for commenting on so many of my emotional posts with words of love. Thank you for taking something so tragic and seeing goodness all around. Thank you for being such a light in such a dark time in my life when I feared daily that I would lose my baby. Thank you for your strength, open heart and faith. ~Ainslie Treleaven
After the loss of my son due to kell I did not know much about this antibody. On top of the grief I believed that I never would be able to have another living and healthy baby…then I researched and found your blog. You helped me so much with information, hope that it would be possible to have another baby and I found this great facebook group because of you! Lucy must be so proud of her amazing mummy and tell everybody in heaven how much you have done for other pregnant and “antibody-mums”. I cannot post a baby picture right now because I am only 18 weeks but I hopefully can as a belated birthday present for Lucy in May/June when baby is here. Thank you so much! ~Fee Munkler
Lucy has held a place in my heart from the first time you shared her with us through your blog. I grieved (though at the time in ignorance) with you and your family. I appreciated your honest wrestling and I was blessed by your continued reliance on God’s promises even when trust was hard.
Then when Dominic died, you reached out to me and became a safe harbor where I could rest when the storm threatened to overwhelm me. Almost twenty years my junior, you have taught me so much.
And now, I am encouraged to share my journey of losing an adult child because of your boldness.
Dominic was always so good with little kids. They loved him. I feel joy when I imagine them together waiting for us to join them.
I would NEVER wish the pain we carry on anyone. But you have shown me that it can be redeemed.
Love you dear one. May God continue to open doors of opportunity because of Lucy.
~Melanie
I was 9 weeks into my first pregnancy when I first heard the term “anti-kell.” Even being in the healthcare field, I was lost. My OB even admitted that I would probably know more about it than her by the time it was all over. So off to a MFM I went. It was very scary because NO ONE knew what I was talking about. The best information I could find online was from your blog. It was information that I could actually understand and process in a time of so much uncertainty. I am so thankful for your story and for your willingness to share something that is so personal because it has definitely touched so many lives! Grant was born on February 13th at 36 weeks due to anti-kell risks, slowed growth, and preeclampsia. He was 5 lbs, 4 oz and only delt with high bilirubin and some eating/breathing issues. Thank you for always being a source of support for so many! ~Lindsey Holtcamp-Koors
I found you after my daughter was stillborn and my adoption plans fell flat. You reflected alot of things I felt but couldnt put into words, which I found very comforting. If you could survive, then maybe so would I. Your blog has also helped me know that it is okay for me to talk about and love my Sinza, just as much as you talk about and love your Lucy.
Happy 3rd heavenly Birthday, Lucy! ~Celian
Your blog helped me navigate anti-k and really understand what was going on with my body and how to find the medical attention I needed… I was sensitized after I had my boys and have now had two healthy girls…
Thank you for your transparency and support.
I cannot imagine all you have been through. Thank you for sharing your story and educating so many people, so we know how to advocate for our babies. I’ve also been in touch with Dr. Moise who was very helpful in helping me communicate with my MFM on some things we didn’t agree on, early in my second sensitized pregnancy. ~Rebecca Ware
I don’t even know how to state how much Lucy has given me. You and Lucy and God got me through my loss of Luke. I love knowing Luke had a sweet, pretty friend in heaven. Your wisdom, tears, frustrations and encouragement in her loss have mirrored and cushioned my own hurt. There are not strong enough words to even say it, friend, but you know. I love Lucy SO much. I wish she were here for the cake and presents too, but then I would not have found you. I would be missing a most precious friendship. And i know God is going to turn our ashes into crowns of beauty and all will feel right when we get to His kingdom. ~Sara
I am Lucy’s grandmother. Her death has been the very worst thing that has happened to me. She left a hole in our family which will never be filled on this earth. On her third birthday, I would like to think about the gifts which she has given me. * Heaven is sweeter and more real now. Lucy has a joy-filled life there with the Lord Jesus and some day I will join her. As the years go by, I realize that it is my true home, not earth. *On the day that I saw Lucy, my heart was broken and I did not understand why this happened. But I did feel God’s help and strength. I know that he will always be there even in the middle of great pain, and this gives me courage for the future. *I think that Lucy gave me a more compassionate heart. When someone tells me about her grief, I am more attentive and sad because I can feel some of her pain. When Bethany and I lived at the Ronald McDonald House in Houston last year, every child there had a life-threatening illness. It is a great comfort to another to enter into their sorrow with them and I often was able to do that. It was because of Lucy. I am very thankful for our Lucy. She is a gift from God. Just before Jesus died, he told his friends, “Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy.” (John 16:22)
Someday the sorrow will be gone, and the joy will stay forever.
And the story that is most dear to my heart…the story about a miracle baby named Nora who only got the treatment she needed because her big sister died. Nora would not be alive if it weren’t for Lucy.
Happy 3rd Heaven Birthday, my beautiful Lucy Dair. I will continue parenting you the best way I know how until I can scoop you up in my arms and mother you in person. I am so proud of you.
Three years closer to having you forever.
Every baby is special, every life is important, and every Mom wants to show off her baby. For those of us who lose our babies too soon, we don’t ever get to show them off and we rarely get to say their names or tell people about them. In our country, thousands of babies are stillborn every year, roughly one every twenty minutes. There are even more miscarriages. Here on my blog, I want to remember all of the lost babies and give their parents an opportunity to show them off. These Mamas are so proud of their babies and are going to share them with us here. We honor these little lives by acknowledging their presence with us, even if it was for a very short time. Do you know how these babies are loved? Do you know that each baby was cherished by their families, even if they left only after a few weeks? Do you know how these babies are missed every single day? Please pray for these families, who have to live every day without their precious children.
CONNER AND BENJAMIN SULLIVAN
I was a happy mama. I had an uncomplicated pregnancy, but that does not mean it was uneventful. I was sick for 16 weeks, and my baby boys were good eaters. I lost a lot of weight in the first trimester. I twisted my ovary (still the worst physical pain I’ve felt, including labor and childbirth). But, I was HAPPY. Little baby “A” and baby “B” were floating along in increasingly cramped quarters but were active little boys who I’m pretty sure would have made really great gymnasts or hockey players. I was trying to be diligent of their kicks and movements, waiting patiently for those butterfly kisses that everyone says that they feel. That is not what my boys gave me. Roll…roll…PLOP! They sure liked fighting for a prime piece of real estate. Even so, I could tell they were best friends. They reacted to each other’s movements and slept and woke at the same time. We even had an ultrasound where they were kicking away… and both stopped at the exact same moment. Two sleeping little babies, blissfully unaware of the world outside of the womb but aware of each other. I often imagined them plotting their escape together with every powerful kick. Two minions, eating their bananas (no joke), laughing hysterically at the fact that mama would have her hands full with two bouncing and somersaulting boys.
On Tuesday, January 7th, the day after my 29th birthday and the day after the boys turned 22 weeks old, I started feeling contractions. Here’s the thing though: who the HELL knows what a contraction feels like if you’ve never had them before? I didn’t. And no freaking way was I looking for signs of preterm labor this early. It was the start of the new year. Their due date wasn’t even until May 12. Chalking them up to round ligament pains, I slept through the night. And just to be clear: I am the type of woman who called the doctor’s office when I was pregnant when I was coughing. Twice. It never crossed my mind these were contractions. I watched Despicable Me 2 that night, laughing at the thought of my boys being curious little minions and wreaking havoc.
Wednesday, January 8th. I felt contractions through the day, but sporadically. Here’s what I know about contractions: the movies always show some poor sweaty woman threatening to kill her husband. Here’s what I felt: uncomfortable for five seconds.
But that night, the contractions starting getting closer together. My best friend urged me to call the doctor. Dr. D didn’t sound worried. “Let’s meet at the hospital, just in case.” No problem. I called my husband to come home from the FD, with a plan to make him get me a smoothie on the way home. We would be home, hop into bed, and laugh that I thought this was anything significant.
I was two centimeters dilated when we got to the hospital. They handed me a horse pill to stop the contractions, but less than an hour later I was at a full 10 centimeters. I had already been unnerved, trying to swallow the guilt of not coming in earlier or knowing what contractions felt like. The bitch of a resident OB told me that I had no cervix left and it was time to move me. That was all the information I got from her. Any questions I asked were promptly followed with, “Let’s wait until Dr. D gets here.” She was a robot. Absent of emotion or caring, she made me feel like a waste of her time. Was she insane? I was a mother on the brink of giving birth to her babies. No one had to tell me that they weren’t at the point of viability; I already knew. But in that moment, hormones crazy and the unacceptable happening, I wasn’t thinking clearly. Thank God my doctor was on his way. I found out later that he rushed to the hospital, scared he wouldn’t make it in time. How wrong we were…
They wheeled me into a labor and delivery room. Up until this point, I had been given almost zero information on what the hell was going on. Maybe, just maybe, there was hope. I could lay here, cervix open, until the babies were bigger and ready to come out. It’s 2014. They can do all kinds of crazy things that used to only exist in science fiction. But then, as I was being wheeled in, I glanced to my right and saw a baby warmer. FUCK THAT BABY WARMER. That stupid fucking baby warmer. I knew what that baby warmer meant: we were going to deliver my babies. I was hysterical. My husband tried to calm me down, and with the lack of information we had been given I think he was still holding on to hope, too. Here’s what I learned about emotion in that moment: it is completely possible to be numb to a situation due to shock, and still feel guilt, anger, and overwhelming sadness. When my doctor arrived, he looked distraught. He explained that I would probably deliver that night. My contractions were a steady at 2 minutes apart, I had dilated quickly, and nothing was going to stop it. At this point, the contractions were worse. Way worse. I was starting to feel like I would be one of those insane movie women. Did I want an epidural? There was a chance, he explained, that when I got the epidural that I could break my water. That was enough to bring clear my mind. I had to get it together. I was a mother. No epidural. I had to give these boys a chance.
Thursday, January 9th. No babies. I was still having contractions, this time every 3-5 minutes. But it seemed like my body had stalled. Dr. D was floored. He stayed all night, prepared to deliver. Dr. F (my other ob – the are partners in their practice), came in. He called the MFM in to talk to me, as they both believed I had an infection. At that point, I had “soft markers” for infection. It wasn’t until later that day that I started to get a fever, a high heart rate, low blood pressure, and an incredibly high white blood cell count. They both decided not to play God. I could tell they wanted to get our boys to 23 or 24 weeks. I did, however, finally give in for the epidural. I made Dr. F promise to stay outside the room in case my water broke. That stuff is liquid gold. Not only did it not cause my water to break, but it finally ceased to feel like a miniature world war was taking place in my belly.
My poor boys. I was so terrified of making my water break, I had stopped rubbing my belly. They loved it when I rubbed my belly. Whenever they were kicking away furiously, I would rub my belly and it would put them to sleep. I feel so guilty – they probably wanted their mommy’s comfort right then, but I just remember not wanting to move an inch in an effort to buy them more time. By this time, Tim and I had decided to name them Conner and Benjamin. I wasn’t going to have them be born baby “A” and baby “B.” The high risk ob, Dr. Z, came in. She explained their chances of survival. Hospitals consider 24 weeks to be viability. They have a chance of survival, but this is not without high risk for profound or severe disabilities. However, at this hospital they can save about 10% of babies at 23 weeks. Again – this is just a survival rate. This 10% can live with seizure disorders, never walk or talk, have cerebral palsy, be blind and/or deaf, require round the clock care… the list goes on. At 22 weeks, they have no chance. Most are too small for intubation. They would attempt to resuscitate them at our request, or we could swaddle them and make them comfortable and have them die in our arms.
To this day, I still have no idea how I was thinking so clearly. Maybe it was the same feeling I had when I initially denied the epidural, a motherly instinct. I just wanted to make them comfortable and let them pass, straight from my arms to Jesus. There would be no brain bleeds, no IVs in their head, no organ failure, no struggles to stay alive in an incubator. We knew if we requested that they try save them, it would only add, at most, days to their life. Those hours would be filled with pain, drugs, and isolation in a plastic world. And for what? So we could selfishly have more time with them? We could never do that to them. What if the intubation didn’t even work? We would have done ugly damage to their trachea and pained them for nothing. Dr. Z said, as a mother, she respected our decision. It was an easy decision for me, but also the most heartbreaking. I can’t look back at this without thinking that I gave up on my boys. I also think if we had made the decision to try to save them, I would regret that as well. I loved (love) my babies. They were and still are my whole world. I had to hand my babies over to God.
You would think that the thought of heaven would be reassuring or relieve some of my pain, but I have to say that on most days it doesn’t. It was not their time yet. They should have been brought home, stolen pacifiers from each other’s mouths, played with their fire trucks, gotten dirty in our backyard, gone to school, graduated, gotten married… they should have done all of those things before going to heaven. They were 22 weeks. Their eyes were still fused shut. They wouldn’t even have a chance to see the world around them for their short time here.
Friday, January 10th. 4:30 a.m. Baby B’s water started to leak, and the rest happened quickly. Our pastor arrived at 5:30 a.m. so that he could be there to baptize them. Contractions got stronger and closer together. I felt like I needed to push. By then, it was evident that I had an infection. The babies could not survive the infection, even if I could carry them a couple weeks longer. The decision was made jointly by Dr. Z and Dr. F that they needed to break Baby A’s water bag to deliver. Dr. F couldn’t even look in the eye when he told me that. I could tell it was breaking his heart to have to do this. We knew what the end result would be. I told the nurse I didn’t want my babies cleaned before she handed them to me. We didn’t know if we had minutes or hours with them, and I wasn’t going to let them take time to clean them if that was the only time we had with them. Then it was time to push. Our pastor cried. We cried. I think our doctor cried. The boys were born into a bright hospital room, full of crying people.
Conner Timothy was born at 11:27 a.m., weighing 1 pound 2 ounces and measuring at 11.5 inches. I cried at every push, knowing that every effort my body made to get them out into the world was the same energy that was bringing them closer to their deaths. Tim cried and told me he looked like me, sounding like a proud daddy. Conner came to me, swaddled and perfect. I know I told him he was perfect, beautiful, and the best 22 weeks of my life. I know I told him I loved him. I know I told him how sorry I was. He was baptized in my arms. And then it was time to hand him to Tim so that I could deliver his brother.
Benjamin Michael was born at 11:43 a.m., also weighing 1 pound 2 ounces and measuring at 11 inches. Tim laughed as he told me they looked exactly alike. It wasn’t until we looked at them side by side that we realized they looked nothing alike. Benjamin looked more like a mix of both of us. I told him all the same things I told Conner, making sure that they both felt equally loved. Benjamin was baptized, and I couldn’t help thinking that God better hear this prayer and come get my babies before they struggle or suffer. I delighted in the fact that I had two sons. I sound crazy, I know. I knew the circumstances. But there is no way to look at your children and feel anything but joy. I was so proud of them.
Conner and Benjamin both passed quietly. Tim was holding Benjamin, watching his heart beat slower and slower until it finally stopped. Benjamin passed first. I didn’t even get to say goodbye to him. The nurse took them over to that baby warmer that I hated so much to hear their heartbeats. Tim quietly came over to me and told me Benjamin was gone, but Conner was still with us. He handed Conner to me, and I sobbed quietly, then loudly, over his body. I didn’t want to know when he passed, so I didn’t watch his chest. I wanted to be saved of this agony. I silently asked God to take him before he suffered. Both of them had lived about 2 hours. The whole time, I worried about what they were feeling. Their nervous systems so immature, every source of stimuli probably overloaded their tiny bodies. They had taken a few breaths, and while it was incredible and beautiful to watch, I could not help but think how awful it was to take in such precious air only to be denied it immediately afterwards. Their skin was thin, and the warmth of the blankets were nowhere near as warm or as soft and soothing as the womb. The nurse and doctor said they were not suffering. I begged to differ.
Before they passed, Tim and I cradled our babies and told them how much they were loved. I may have said I’m sorry as many times and I said I love you. I stared at Benjamin’s beautiful face, thinking how much he reminded me of his father. His features were so well defined and delicate, with his little hand always reaching for his face and his head snuggled into his shoulder. I couldn’t bear to hand him to Tim, but I needed to spend time with Conner. Conner had made a couple of noises that sounded like hiccups. I wish I had a recording of this sound. It was beautiful: short and sweet, but it was probably a struggle for air. He stuck his little tongue out, almost in a playful manner. I had always worried with IVF that there might be an embryo mix up, but if Conner wasn’t my kid then I don’t know who else could be. My baby boys were so brave, so strong, and so handsome. Yes, every mother thinks their babies are the best looking babies in the world. But seriously, these boys deserve some sort of award.
Angel babies – we will meet again. Mommy can’t wait to hold you. Until then, may you never go a day without knowing my love for you.
Thank you to Krystal for sharing Conner and Benjamin’s story with us. Her writing is so vivid, I felt like I was there. Her boys sound like amazing little daredevils, full of energy and love. I imagine Lucy likes playing with them in heaven because they probably act a lot like her brothers on earth. I can’t imagine having to make such a heartbreaking decision of whether to try to keep them for several extra days with tons of medical intervention, or to let them pass peacefully in their Mommy’s arms. What a loving and selfless choice she made. Conner and Benjamin are lucky to have such a wonderful mother.
If you would like to share your baby’s story, just e-mail me at [email protected] You can share whatever you want about your baby, and you don’t have to include your name if you don’t want to. Also, I think your baby is just as important if you lost him/her at 6 weeks or at 40 weeks. Even if you never knew the sex of your baby, you might have had names picked out, a due date and lots of hopes and dreams for that child. All of that is important and is welcome here.
Every baby is special, every life is important, and every Mom wants to show off her baby. For those of us who lose our babies too soon, we don’t ever get to show them off and we rarely get to say their names or tell people about them. In our country, thousands of babies are stillborn every year, roughly one every twenty minutes. There are even more miscarriages. Here on my blog, I want to remember all of the lost babies and give their parents an opportunity to show them off. These Mamas are so proud of their babies and are going to share them with us here. We honor these little lives by acknowledging their presence with us, even if it was a very short time. Do you know how these babies are loved? Do you know that each baby was cherished by their families, even if they left only after a few weeks? Do you know how these babies are missed every single day? Please pray for these families, who have to live every day without their precious children.
BABY BOHN
My husband and I got married Aug 20, 2011, three days before my 30th birthday. Everyone asked us right from the get-go when we were going to have kids. My husband’s coy reply was always “In 2 years”, even after we’d been married for a year! We had discussed that we wanted to wait 2 years to try for a baby, so around Christmas 2012, we decided that since it usually can take up to 6 months to conceive once you actively start TTC, we were going to start trying in May 2013.
May came and went with no BFP. The 2 week wait that month was the longest 2 weeks of my life! June and July also came and went and I started losing hope that it would be as easy as we thought it would be.
In August, we had booked a hotel room in the Twin Cities for our anniversary/my birthday. We had a wonderful time and were relaxed and at ease the whole week. September 4th, I was supposed to go to work, when I woke up with a terrible tooth ache. The whole side of my face was swelled up and I ended up calling in to work and having to get my tooth pulled. I remember the dentist asking if I could possibly be pregnant. Since it was during the 2 week wait for that cycle, I told her yes, even though in my heart, I was seriously doubting it since I’d been disappointed the previous three months. Just to be on the safe side though, I told them it was possible and they took all the necessary precautions. I was then given Vicodin for pain relief and sent home. I only took the medicine twice because the pain wasn’t that bad, for which I was grateful. The rest of the time I used 2 ibuprofen, and that was only a couple times.
On Sept 9th, I called my mom and mentioned to her that my period was due the next day and that if I didn’t get it, I would test the following morning. I told her my breasts were tender, but that was normal right before my period. Sept 10th came, but my period did not, so the morning of Sept 11th, I took the pregnancy test. I wasn’t expecting much, but I just wanted to be sure. I laid it on the counter, cleaned up the bathroom a little bit, and when I went to look at the test, there was my faint second line! I was so shocked that I didn’t believe it. My husband was at work and wouldn’t be on his lunch break for a couple more hours. I ran to Walmart to get another test, a different brand, just to make sure that it wasn’t a false positive. Sure enough, another faint line!
At that point, my first emotion was despair and guilt… why would God let me finally get pregnant when I had been using these drugs that could harm the baby?! I burst into heart-wrenching sobs and just cried out to God until I had no tears left. Then, once I had control of my emotions again, I started to feel this unexplainable joy begin to blossom in my heart. I couldn’t wipe the smile off my face! My whole life, from the time I was old enough to know what babies were, I knew I wanted to be a wife and a mother. That had been my only dream for my life, above career, location… everything else paled in comparison to this longing in my heart.
I gathered up the positive tests and text my husband that I was going to come to his work and have lunch with him. Because we talked daily about whether the next test would be positive, when I showed him the positives, he wasn’t really surprised, but he was excited!
I went to the doctor that morning just to confirm that I was indeed pregnant. They told me that yes I was and my due date was May 17, 2014. I was walking on air during the whole appointment and the nurse was laughing because I couldn’t quit smiling. I was so excited because the timing was perfect. Since our wedding was in my birthday month, I wanted our baby to be born in my husband’s birthday month. My due date was 10 days after his birthday! It couldn’t have worked out any better than if I’d been able to plan it all on purpose!
I made a mental list of everyone I wanted to tell and in what order to tell them. I called my mom and told her I wanted to have lunch. We met up at a thrift store for some girl shopping time and I had the positive tests sitting on the passenger seat of my truck. I told her I had something for her in the truck and to come get it. She looked in there, picked up the tests, stared at them long and hard and said “Really?? I’m gonna be a grandma?!?!” We laughed and cried and hugged and she was just as excited as I was!
From there, it was a series of telling other family and friends. My aunt and family friend were the next to find out later that day. I wanted my dad there, but I wouldn’t see him until a few days later. It killed me to have to keep quiet until then, but I wanted him to be one of the first to know. He was so excited for us and it was worth the wait! Finally I was able to post it on Facebook after we told my husband’s family. Everyone we knew was so happy for us, knowing how badly I wanted a baby.
My only symptoms in the following weeks were extremely sore breasts, food didn’t taste good and my appetite was cut in half. My mom told me that was all that happened to her when she was pregnant with me, so I was hoping that would be the extent of my symptoms for the duration of the pregnancy. I told everyone at work that I was expecting, partly because I couldn’t keep it to myself and partly because I worked in retail and it can be very physically demanding at times.
Everything was going smoothly and I was keeping daily track of the fetal development. At 6 weeks, I posted on Facebook that the baby’s heart started beating that week! I was thrilled that in a few weeks, I’d be getting my first ultrasound and would hear the baby’s heartbeat!
At 7 weeks along, on the morning of Sept 29th, I got up for work and gave my husband a hug goodbye. I told him that it was weird, but my breasts didn’t hurt so bad that morning. I was glad because it was getting hard to cuddle with him when I couldn’t even rest my chest against him without extreme discomfort. I went to work and felt fine all morning. I had some mild cramping, but I had had that since I found out I was pregnant and mentioned it to the nurse, who said it was normal. Around noon, I went to use the restroom, and I saw there was a noticeable amount of blood in my panties. My heart dropped to my stomach and started to panic. I calmed myself down enough to leave the bathroom and decided to take my lunch break early so I could call the nurse hotline. The nurse said that I should go home and rest and if the bleeding got worse, to go to the ER, but that he didn’t think it was anything to worry about. But I knew that he was wrong. I knew that I was having a miscarriage. I went back into work and called my manager and told her that I thought I was having a miscarriage. I started crying while I was telling her and told her I was leaving for the day and I would keep her updated.
I called my husband and told him that I was bleeding and that I thought I was losing the baby. He told me to just get home so I could rest, so I got off the phone with him and called my mom. Her landlord worked at the hospital and she told my mom if I was bleeding, it was a good chance that the baby was already gone. My mom and I cried together on the phone until I got home, then, weeping, I fell into my husband’s arms and we just stood there, mourning the moment. I cried until I was exhausted, knowing that my dreams of becoming a mother to this child were shattered.
Throughout the afternoon, evening, and into the next morning, my body expelled all the tissue that had been sustaining the little life in my womb. Every hour I would get out of bed and collect more of what came out, so that I could bring it to the doctor the next day. As soon as the clinic opened that morning, I called and made an appointment. I cried through the whole thing. The midwife looked at the tissue I had brought in and said that it was definitely placental tissue and that it was evidence of a miscarriage.
I felt so empty. I felt like it must’ve been my fault for using the medication I’d been given for pain before I knew I was pregnant. The midwife assured me that miscarriage is just one of those things that happens more often than most people are aware, and that there is nothing that I did to cause it, and nothing I could’ve done to prevent it.
I went home and grieved through the day with my husband. The next day, we started calling our family and posted on Facebook that our baby went to be with Jesus. All our friends and family were as devastated as we were. We had a lot of support from everyone we knew, and people started telling us how they had gone through similar circumstances. It was so hard, but I was very grateful for the people God had placed in our lives, and their compassion for us in our darkest hours.
A few days later, my mom came over to keep me company so I wouldn’t be alone, and I told her the details of what happened. I told her that I didn’t think the baby had passed yet, or if it had, that I had missed it, and that it made me sad because if I had the baby, then I would be able to have a feeling of closure. Later that day, after my mom had left, I used the restroom, and one little piece of something came out that was different from everything else that had passed initially. It was the right size and shape to have been my baby, and I’m 98% sure that it was. I had a strange peace after that. I felt fiercely protective of this little life that never made it past 7 weeks formed.
That week, my husband and I took our baby, wrapped in a brand new blanket, and we buried our firstborn beneath a tree in my mom’s woods. We didn’t name our baby since we didn’t know the gender, but I know that God has a name for every life that He creates, and He has given our baby the perfect name in Heaven. I can’t wait to meet my child!
It has been almost 9 months and my baby’s due date has come and gone. It was a bittersweet time for me because of all the “could have been’s”. But I know that my baby is happy and healthy in God’s arms and if they can’t be in mine, there’s no other place I’d want them to be!
My husband and I are still trying to conceive again, but as of yet have been unsuccessful. I have surrendered our situation to the Lord and we are waiting on His timing. I praise Him that I got to be a mommy to my tiny little one even if for only a few weeks!
Thank you to Baby Bohn’s mommy for sharing her precious child’s story with us. I love seeing proud mama’s honoring their babies, regardless of how early they lost them. For all of you reading this, I would like to ask for you to pray for Tanya. Will you pray that God gives her a healthy rainbow baby SOON? I know how hard it is to wait and wait and wait for your baby of hope to come after losing a child. It is one of the hardest things I’ve ever done in my life. Please pray that she doesn’t even have to wait one more month and that this next baby will end up healthy and screaming in her arms.
If you would like to share your baby’s story, just e-mail me at [email protected] You can share whatever you want about your baby, and you don’t have to include your name if you don’t want to. Also, I think your baby is just as important if you lost him/her at 6 weeks or at 40 weeks. Even if you never knew the sex of your baby, you might have had names picked out, a due date and lots of hopes and dreams for that child. All of that is important and is welcome here.
It has taken me a while to write about our baby Pax because it was just too painful at first and I needed a little privacy to work through my fresh grief. I’m feeling healed enough now to share a little bit about our baby Pax.
Pax is our 5th child, who we lost to an early miscarriage in October. We thought he/she would be our rainbow baby after losing Lucy and Jude, but it wasn’t to be. We were so excited to get another positive pregnancy test, but very cautious with our hope. The exact same thing happened with Pax that happened with Jude in July. I got a positive pregnancy test, and another and another. I even tested with a few different brands to make sure it was right. After several days I noticed the second line on the tests stopped getting darker and a few days after that I noticed them getting lighter. We lost the baby at the exact same gestation as Jude. Strangely, I had a lot of peace the whole time. I think I’m learning to hold my children with an open hand (or maybe I’m just getting pessimistic.) Either way, God blessed me with peace as I was losing my third baby in eight months. That is a miracle.
My doctor reminded me that this early loss is not connected to anti-kell antibodies at all, since that can’t affect the baby until about 16 or 17 weeks at the earliest. The doctor couldn’t find any reason for this miscarriage, just like my last one with Jude.
We decided to name our baby “Pax” because it means peace. I always wanted to name one of my babies Pax, but Josh said absolutely not because Brad Pitt and Angelina Jolie have a kid named Pax and he didn’t want people to think we were copying them. Well, after we lost this baby he said we could use the name, so I finally got my baby Pax. I always wanted five kids and now I have them. I feel blessed, but it feels strange for my children in heaven to outnumber my children on earth.
Unfortunately, I never got an ultrasound picture of the baby, but I do have pictures of me while I was pregnant with Pax. Here I am with my boys (and baby Pax) at the Memphis zoo. It was a fun, sunny day and I remember feeling so happy, almost buoyant. I am blessed to have this one happy memory with my baby Pax (and my other two lovies, of course.)
Pax was due on June 15th, my Dad’s birthday. It has been hard to see other women who are due in June announce their pregnancies. It is hard to see their bellies grow round with the life of their child while mine, yet again, remains flat. And it is hard to see my boys lose the heart to keep praying for a baby they can keep. Losing a baby is so hard, at any stage. Losing THREE is devastating. But God, He is my redeemer and He has given me peace. Nothing can separate me from His love and nothing can separate my children from His love. Even though I am not full of joy right now, it is well with my soul.
“JOY” -One of my favorite songs since losing Lucy. I cry every time I hear it.
The other night we put up our Christmas tree. It wasn’t as sad as I thought it would be because the boys were so excited and their joy was contagious. I did have a breakdown when I saw this ornament, which should be Lucy’s this year (It says “Baby’s 1st Christmas” at the bottom.)
But instead I ordered this ornament for her and it looks so beautiful on the tree.
The next day, the boys and I painted ornaments for Lucy and her friends in heaven. They still don’t know about their other two siblings in heaven, so I just included them as two more of “Lucy’s friends.”
Painting these ornaments for these babies made me so happy. Not much about Christmas this year has made me happy, but this did. The boys loved hearing all the names of Lucy’s friends, especially Liam. He understands much more than Asher and thinks heaven is a very cool place with cool people in it (and he’s right.) It seems to comfort him to know Lucy has friends to play with. He asked several times, “Mommy, tell me all the names again.” I love saying these babies’ names because they are not said enough. They should be said for a lifetime, but very few people hear their names spoken. They were spoken in my house on this day and it sounded beautiful to my ears.
We made ornaments for Simon,Milly Brandon, Lucy, Jude, Pax, Calvin, Luke, Rylan, Esther, Taidgh, Aubrey Rose and Ann Reese (both represented by the AR) and baby V.There were so many other babies I wanted to make ornaments for and I almost went back to Hobby Lobby to buy more ornaments to paint, but then I thought, “Where will it end?” I would have to buy several packs of ornaments if I wanted to make one for every baby that I know who has been lost. I don’t even know if they would all fit on my Christmas tree. That thought made me sad because how can so many babies die? How can so many parents and siblings go through this pain? So, this year I decided to only make as many ornaments that came in the pack I bought. As I worked on each ornament I prayed for the family who is missing their precious baby this Christmas. Every time I see these ornaments on the tree now I pray for these families. Liam was so excited about hanging all the ornaments on the tree and wouldn’t let anybody else do it.
And of course, he hung them all at the very bottom of the tree 🙂
Merry Christmas Simon, Lucy, Jude, Pax, Luke, Rylan, baby V., Aubrey Rose, Calvin,Milly Brandon, Ann Reese, Esther and Taidgh. I know your first Christmas in heaven is going to be so much more amazing than all of our Christmases on earth put together.
*Edited to add- I just realized that this is not Ann Reese’s first Christmas in heaven. She died last Christmas Eve, so technically this is her second Christmas in heaven, although it’s not any easier on her family I’m sure.
On this day nine years ago our baby’s heart stopped as we helplessly watched on ultrasound. It was by far the worst day of my life. A day that broke me to my core and divided my life into before and after.
Of all the days of my life so far, I have thought about February 8th the most. That day is buried deep inside me. Malignant. Permanent. I wish I could root it out and erase it forever. But despite the trauma and pain I felt on February 8th, 2013, there is this one part that I could never erase, even if I was given the choice. God’s presence. I have never felt the presence of God in my life like I did that day. He was there with me, standing in the room next to Josh. The doctors, nurses and family members came in and out but He never left. He was a physical presence in the room, holding me up and carrying me. And He repeated the same phrase to me over and over again, an audible voice in my head. I WILL REDEEM IT. The greatest loss of my life. My irreplaceable baby girl had been taken from me. And yet God promised me that He would redeem the loss. It felt impossible. But when He spoke the words to me again and again as I labored and birthed my lifeless girl, I knew He was speaking the truth. I trusted that He would fulfill His promise to me.
After we got home from the hospital I looked up the meaning of “redeem” and it means “to free from what distresses or harms, to change for the better, repair, restore, to exchange for something of value, to make good, to atone for, to make worthwhile.”
That is a big promise. Today, nine years later, these questions keep coming to mind-
Has He redeemed it like He said He would?
Did He keep His promise?
The answer is no and yes. During the last nine years God had redeemed far more than I ever thought possible. He has not restored Lucy to me, but many other “permanent” losses have been restored to me. God is keeping His promise and I know He will fulfill it completely once I get to heaven. So today, on Lucy’s ninth birthday I wanted to list nine things that God has redeemed since that day in 2013 when Lucy died.
My dream of having a daughter on earth
My pregnancy and childbirth experience
Our dream of having a large family
Our trust in doctors and the medical community
My ability to advocate for what is right, even if it goes against the cultural norm
My breastfeeding experience
My ability to speak up for and protect my children
My ability to celebrate and cherish other women’s pregnancies/babies
Inner joy and peace
His gifts abound day after day. Even though God has done far more than we ever could have imagined, we still ache for the one thing He has not yet redeemed, our Lucy Dair. Our grief is palpable today as we remember our daughter and wonder who she would be at age nine. We remember how she was neglected by the medical team we entrusted her to. We work through forgiveness again and again. We ask God to restore what has been taken from us, and we wait for Him to fulfill His promise. And if I quiet myself and close my eyes I can feel His presence here with me in my grief. He still hasn’t left.
Isaiah 43:1-2 Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through the fire you shall not be burned, and the flame shall not consume you.
I hope everyone has had a wonderful Thanksgiving week so far. It has been way too long since I’ve updated the blog! Nora celebrated her fourth birthday in July and Callum celebrated his second birthday in September. They are growing and thriving and lighting up the world around them. We still can’t believe they are both here safe and sound after we were told we could never have any more children after Lucy died.
I wish so desperately that every woman with these antibodies could have the phenomenal care I received during my pregnancies with Nora and Callum. Unfortunately, it is fare more common to see women receive inadequate care during their alloimmunized pregnancies than the proactive care I had with my last two pregnancies. Nora and Callum are my constant reminders of how these pregnancies can and should turn out if treated properly. For years I have wanted to do something more to fight this disease and prevent other parents from experiencing the trauma and devastation that we have endured. With the encouragement of family, friends, doctors and fellow antibody parents, I decided about a year ago that I would take the leap and try to start a non-profit organization to help support families facing alloimmunization (antibodies during pregnancy) and to help protect babies threatened by HDFN (hemolytic disease of the fetus and newborn.) I have teamed up with some wonderful people and we are so excited to announce that The Allo Hope Foundation is now an official 501(c)(3) non-profit organization.
Our main goal is to prevent harm, stillbirth and infant death caused by maternal alloimmunization and HDFN. We are dedicated to providing patient advocacy, support and education while promoting research and improving healthcare practices for the condition.
We are in the start up/launch phase at the moment, raising funds and forming our patient advisory board and medical advisory board. Our first priority is to raise funds and create a website where patients, their families and care providers can find information, resources and support. The Allo Hope website will also allow us to reach our global alloimmunization and HDFN community and bring more awareness to the disease. Come and follow us on Facebook and Instagram and stay tuned for ways that you can help! Thank you to everyone who has prayed for me and encouraged me on this journey for the past seven years, I don’t know where I would be without you.
Nora has become obsessed with her sister lately. It has taken me completely off guard. I don’t really know how to parent her in this situation since it’s all new to me. Nora wasn’t around when I was pregnant with Lucy and she wasn’t here when Lucy died or afterwards when I was paralyzed by my grief. I don’t think she has ever seen me cry over Lucy since I have more control over my tears now and when I lose control I can still hide it from her. Ever since Nora was born I’ve carried this terrible ache inside for her to know her sister Lucy. I have grieved for Nora’s loss many times, but I have been very intentional about not projecting that grief onto Nora. It’s not Nora’s grief, it’s mine. So I don’t ever say things like, “You would have a six year old sister now if Lucy were alive.” Or, “I wish your sister was here so you could play with her.” If anything I have tried to lessen the loss for Nora by avoiding the topic altogether and never showing her my grief over the loss of her relationship with her sister.
Something incredible has been happening though. As Nora grows and understands more about the world around her, she is becoming aware of her sister’s absence all on her own. I don’t know how or why but her grief over the loss of Lucy has been growing and intensifying. There’s something beautiful about the fact that a four year old can understand the magnitude of the loss of her sister who was stillborn before she even existed. It’s like she knows what she is missing. She often cries in bed at night for her sister Lucy. Sometimes she cries in the middle of the day and nothing I say can soothe her. Often, if she plays with an older girl around Lucy’s age she will come home and cry saying, “I miss my sista Lucy. When can I go play with her?” Nora sometimes asks what kind of toys Lucy has and she asks if she can play with her toys too.
I have tried telling her how happy Lucy is in heaven and that we can see her one day but that often leads to more anxiety because Nora knows she has to die in order to be with Lucy. I’ve tried telling her how fun Callum and her big brothers are and even though she does enjoy her brothers so much, it doesn’t make her loss any less painful. She says she just misses Lucy, not them. I’ve even tried asking her if she maybe wants a baby sister and she says, “No, I want my big sister Lucy.” The other day as I was trying to soothe Nora while she cried, I suddenly realized that I was using all of the typical “encouragements” that others used on me when I was in deep mourning, even though I know they don’t work. “Be thankful you have two healthy kids.” Yes, but they aren’t Lucy. “She is safe and happy in heaven.” Yes but I want my baby with me HERE. “Maybe you can have more kids.” Yes, but they won’t replace the one who is missing. No one can. Why do I think these weak reassurances will work on my daughter when they never work on anyone missing a person they love? I use these phrases because I don’t know what else to do and I want to fix it. I want to lessen Nora’s pain somehow. And this is exactly why other people have used these phrases on me in the past. They just wanted to comfort and lessen my pain.
Yesterday as we were driving Nora asked, “Where was I when you were a little girl?” and I said, “You weren’t alive yet. That was long before you were born.” “Oh, so I was stillborn?” she asks innocently. I catch my breath. How does she know that word? I have never told her what that word means. “No, you weren’t stillborn.” She furrows her brow, “But you said I wasn’t alive so that means I was stillborn.” Wow. She is incredible and I have no idea how to be her mother sometimes. I don’t know how to lessen her pain or fill the gap that her big sister left behind. No one can besides God. But I trust that He can redeem Nora’s losses just like He promises to redeem mine.
I am reminded of the many ripples of destruction that continue to crash through our lives and our family since Lucy died. How many other families are experiencing ripples from their own tragedies that I can’t see? Nora’s grief has humbled me and reminded me to be kind and loving to those around me. Just because their loss or their trauma was a long time ago it doesn’t mean they aren’t suffering from the ripples created by that event. Just because I can’t see the suffering on the surface it does’t mean they aren’t struggling. My heart has been softened towards those on the outside of grief too, who don’t know what to say but desperately want to lessen the pain of others. Maybe their phrases are empty words that don’t heal, but they are just trying their best like I am when Nora is crying for her sister and all I want is to take away her suffering.
So, my daughters have humbled me and challenged me to love others better and to forgive when the words aren’t perfect, to give others the benefit of the doubt and to remember that God alone can redeem our deepest losses.
This past weekend Josh and I attended our infant adoption training classes at the Bethany Christian Services office in Pensacola, Florida. I was surprisingly nervous before going, for some reason. The whole adoption thing is new for us, so we didn’t know what to expect and we had a lot to learn. We were so shocked at how easy going and kind the people were. It felt like a family getting together to talk and hang out. It was warm and inviting and professional all at the same time. We felt so encouraged listening to other adoptive parents tell their story and listening to a woman tell her story of how she was adopted as an infant. We both felt confirmation that this is exactly where we are supposed to be and exactly what God wants us to be doing.
Adoption is never a first choice, for anybody. Ideally, all children should be able to live in a loving, safe home with their birth parents and ideally, all biological parents should be able to parent their own children and provide for them. Unfortunately, we live in a fallen world that is full of sin and heartache and loss. At one point during the training class I looked around the room and realized that every woman in the room had lost a baby. So much hurt. The birth parents are hurting too. They are usually in extremely difficult, stressful situations where they just can’t parent their child like they want. The baby has a lifetime of needs to be met and a love tank that needs to be filled daily, hourly.
As the director was speaking, I was feeling all of this heartache and loss so deeply. I hurt for the birth parents who have to make such a huge sacrifice, and I hurt for the adoptive parents who (mostly) have been through intense disappointment and loss. I suddenly had this beautiful picture form in my mind and it all made sense. I saw two puzzle pieces that fit perfectly together. They fit so tightly, so precisely, that it was obvious that they were made to fit each other. One puzzle piece was the birth mom and the baby. They were so needy; hungry for support and love. They needed to be filled, cared for, reassured, nurtured. The other puzzle piece was the adoptive parents who want someone to nurture. They had so much love and support to give, they were overflowing, aching to give it. Just like how I ache for a baby now, these parents long for someone to care for and love unconditionally. God has placed a strong desire to parent in them for a specific purpose. You know, before I had Liam, Asher and Lucy I wanted to be pregnant so badly and I wanted to have a baby, but that desire is not the same as it is now. I have been changed by my losses. I am a different person. I ache for a baby like never before and I cherish my children like never before. A lot of babies who are adopted come with special needs, whether it’s from drug exposure or neglect or just a very high stress pregnancy. And the adoptive parents that they are going to have experienced loss so they appreciate things differently and they love so deeply. It is a perfect match.
He is a sweet God isn’t He? When we brought sin into the world and messed up His perfect plan, He could have just said, “Well, I told you not to do that, so now you can deal with the consequences yourself.” But instead, He takes the broken pieces of our lives and puts them together to make something new. He makes a new plan, and He uses the pain and loss and difficulties to create beauty. I can’t wait to see what He is going to do with all of our suffering. I can’t wait to see who He has picked out for us to pour our love into.
Horrible! Just another reminder that I won’t be announcing the arrival of my first baby girl in a couple of weeks. As if I need to be reminded. And last week I got Enfamil coupons in the mail for “My new baby.” Please pray for me as Lucy’s due date approaches. I have been dreading the first week of July since I lost Lucy in February. The closer it gets, the sadder I get. I’m hoping there will be some relief once it passes. Thank you so much for the prayers.
❤️”
There were so many other babies I wanted to make ornaments for and I almost went back to Hobby Lobby to buy more ornaments to paint, but then I thought, “Where will it end?” I would have to buy several packs of ornaments if I wanted to make one for every baby that I know who has been lost. I don’t even know if they would all fit on my Christmas tree. That thought made me sad because how can so many babies die? How can so many parents and siblings go through this pain? So, this year I decided to only make as many ornaments that came in the pack I bought. As I worked on each ornament I prayed for the family who is missing their precious baby this Christmas. Every time I see these ornaments on the tree now I pray for these families. Liam was so excited about hanging all the ornaments on the tree and wouldn’t let anybody else do it.
Merry Christmas Simon, Lucy, Jude, Pax, Luke, Rylan, baby V., Aubrey Rose, Calvin, Milly Brandon, Ann Reese, Esther and Taidgh. I know your first Christmas in heaven is going to be so much more amazing than all of our Christmases on earth put together.
