Here’s the story of how we lost our Lucy Dair. We were so excited when we found out we were pregnant with our third child. I had a strong suspicion it was a girl from the beginning. We had prayed for this baby and we were thrilled that God had blessed us with another sweet life to love.
We expected a normal, healthy pregnancy and birth like we had with our older two boys, Liam and Asher. Sure enough, the all day, all night nausea and vomiting started around 6 weeks as usual. We didn’t tell anybody we were pregnant until Thanksgiving Day. Our younger son Asher revealed the news with his “Big Bro” shirt. Everyone was excited about our new baby and I imagined what the next Thanksgiving would look like with another little one with us to celebrate.
We had our first ultrasound at 9 weeks and everything looked perfect. The baby was very active, had a healthy heartbeat and was measuring perfectly on track with my gestation. It’s so amazing to see your baby for the first time. We loved her completely. Josh left for class right after the ultrasound and I had my appointment with my doctor. I had no idea that my safe, cozy world of happy expectations was about to crumble. Dr. C came in and seemed reserved. He didn’t ask me any of the usual pregnancy questions. He told me there was a problem with the preliminary blood work and he was pretty concerned. There was nothing wrong with the baby, but my blood tested positive for anti-Kell antibodies. These antibodies were new, they hadn’t been there when I was pregnant with Liam or Asher. Both of my boys were so safe and happy in the womb that they eventually had to be forced out at 41 weeks. It was hard to wrap my mind around this new reality-that this baby could possibly be in danger. Dr. C told me that if my baby was Kell positive then he/she might be in danger. Apparently, my second child, Asher, was Kell positive, but I had not been sensitized and did not have the antibodies yet at that point so he wasn’t in danger during the pregnancy. During childbirth some of his blood mixed with my blood. Because his blood was Kell positive and mine wasn’t, my body recognized it as a foreign thing and created antibodies to fight it. This is the same thing that happens when your body recognizes a virus in your body. It creates the antibodies to fight the virus and destroys the virus. Well, my body now thought Kell positive blood was a dangerous like a virus and my antibodies would attack it and try to destroy my baby’s blood. Dr. C told me I would now have these antibodies for the rest of my life, which means all of the rest of my pregnancies could be risky.
I was referred to a high risk doctor (MFM) in Birmingham, but was assured that because they caught it so early and would monitor the baby closely it would probably all turn out ok. These babies are supposed to have at least an 80% chance of survival. Surely we wouldn’t be in the 20%. We found out that my antibody titer (level) was extremely high. A titer of 4 or higher was considered dangerous to the baby. Mine was 1,024 right from the start. Apparently I have a very good immune system. This was bad news for the baby. We started getting regular ultrasounds and the baby looked great- big and healthy and energetic. I felt her kick for the first time at 15 weeks (just like her brothers) and felt her kick almost every day after that. We were SO thrilled to find out at 16 weeks that we were having a girl. Liam and Asher were so excited about having a baby sister to protect. I remember surprising them with some pink Starburst candy and revealing that they would be having a baby sister. My parents screamed and the boys jumped up and down when they found out. I haven’t been able to buy that Starburst candy since then.
During one of my earlier appointments in Birmingham, I asked my MFMs when they would be doing an MCA scan because I had read that the only way to tell if the baby is anemic is by doing this special scan on the baby’s middle cerebral artery in her brain. They said they would be doing a level 2 ultrasound on her at 16 weeks and that would show how she was doing. I assumed this would include an MCA scan. I was nervous going in to the big ultrasound. There were two doctors in the room and one ultrasound tech and they were chatting cheerfully. One of them had a son named Liam too. They scanned baby Lucy and looked in depth at each of her organs, measuring and making sure she wasn’t in distress and that all of her organs were developing correctly. They said she looked absolutely perfect. I felt some relief but still had not been told whether she was anemic from the antibodies or not. I asked about the MCA scan and they said, “Oh, we aren’t doing one of those today. We don’t start doing those until 20-24 weeks. Your baby is healthy and doing great.” I asked if they could please do the MCA scan just in case she was anemic and they said no, it’s unnecessary. This dark uneasiness settled in my stomach. “How do they know she is doing great if they didn’t check her for anemia?” I thought. I didn’t know what to do. They were the experts so I let it go, but the terrible feeling that my baby was in danger remained.
At almost 18 weeks I went in for another check up and I asked them to do an MCA scan. The MFM told me again that they don’t do MCAs until 20-24 weeks, even on a patient with an anti-Kell titer of 1,024. I had read online that they should start by 18 weeks at the latest. The doctors reassured me that babies aren’t even really affected until 20-24 weeks at the earliest, so she was fine. They also said that because it was my first sensitized pregnancy, the baby probably wasn’t in that much danger. I felt compelled to have the scan, so I decided that I would not be leaving the doctor’s office that day until they agreed to do the scan. Not one of the MFMs could explain to me the benefits of not doing the MCA scan. After a lot of awkward confrontation, they (reluctantly) did the first MCA scan. No one could believe the results. Lucy was EXTREMELY anemic and was already showing the beginning signs of fetal hydrops, which is how these babies die. Her blood was being attacked by my antibodies and her MoM was 2.5 A baby is supposed to receive an intrauterine blood transfusion once the MoM gets to 1.5 so Lucy had been needing a transfusion for a while and did not receive the treatment she desperately needed. The doctors actually thanked me for pushing to get the MCA scan and said if we had waited even a couple more days she wouldn’t have made it. They immediately scheduled an intrauterine blood transfusion (IUT) for the next morning. I was in shock and realized that I hadn’t felt Lucy kick much that day. I had a feeling that she wasn’t going to make it. My heart was shattered. Carrying around your baby and knowing that she’s probably in the process of dying inside you is one of the worst feelings imaginable. I cried out to God to give me strength and He sustained me.
The next morning we went in for the blood transfusion. Usually these babies aren’t affected until much later in the pregnancy, so they are bigger when they need to have a blood transfusion. Lucy was barely 18 weeks. They had only done one other intrauterine blood transfusion on a baby that tiny EVER at UAB. None of the doctors told me that there were more experienced doctors in other states who could have done the transfusion on Lucy safely. The doctors weren’t sure if they could get any blood to her, but they were willing to try. An IUT is performed by sticking a long needle through the mothers belly into the baby’s umbilical vein and give the baby a blood transfusion. The procedure went better than they expected (and yes, I was awake through the whole thing.) My MFMs couldn’t believe they were able to hit the tiny vein just right. They also went in a second time and put blood into her abdomen. I learned later that doctors are not supposed to put blood into the baby’s belly if fetal hydrops has already started and fluid has collected in the baby’s belly. This blood they put into Lucy’s belly extended her abdomen even more than it already was. She was unable to absorb the blood in her belly because of the fluid that had already accumulated there.
The doctors tested her blood before they put the new blood in and her hematocrit was 6. She was very, very sick. The doctors told us afterwards that “all of the stars had aligned” and the procedure went perfectly. They were optimistic about her surviving. They said it was a miracle. We scheduled a follow up appointment for a week later. Everyone was elated and thanked God for answering our prayers, but I knew that Lucy wasn’t kicking. I knew something wasn’t right. All the other women online who had IUTs said their babies all perked up after having an IUT and kicked like crazy. Lucy was still. I learned later that the doctors should have checked Lucy 24 hours after the procedure and should have probably done another IUT on her only three or four days after the first. I went home and tried to be a good mommy to one year old Asher and three year old Liam but I was SO, SO sad. Those were some of the most anxiety ridden days of my entire life. I never felt her move again. I would wake up in the middle of the night in a sweaty, anxious panic, frantic to do something to save her.
After two days I went back to the ER at UAB in Birmingham because I just knew she was dead. I hadn’t felt her move since before the IUT. The nurse hooked me up to the heart monitor and there was her sweet, strong heartbeat, the best sound in the world. I sobbed and sobbed to hear that beautiful sound. I also noticed that she wasn’t moving much on the ultrasound. The doctors saw her move her arm once and they said the heartbeat sounded good so she was fine. I asked for another MCA scan but they refused. I begged for another MCA scan and they agreed to send down the on call MFM to talk to me. He looked at Lucy and said she was fine and even if she was sick, there was nothing they could do. They had to wait at least a week to do another IUT. This was not true at all, but I didn’t know it at the time. He was the maternal fetal medicine specialist and I was just a mom. What could I do? I had a feeling that I was losing her. I left the labor and delivery floor at their insistence and my heart felt broken. I didn’t know what to do. I realized at this point that I had hardly taken any pregnancy photos because I was afraid of getting attached to the baby. I suddenly wanted to remember being pregnant with her. And of course I was attached to her, I loved her so much. Why in the world did I think I could protect myself from getting attached to my own daughter?! I had my sister take these pictures a few days before Lucy died. I’m smiling, but I was dying inside. Absolutely dying inside.
I prayed and prayed and waited and Lucy slowly died inside me while the doctors stood by. Finally it was time for our check up to see if the blood transfusion worked. The doctors did another MCA scan and discovered that her anemia was even WORSE than before the transfusion. She was so sick. She was showing more signs of fetal hydrops and now her heart was showing some signs of damage. Her MoM was 2.7. The doctors were baffled as to why the blood transfusion apparently didn’t work. They told me she would probably die and they weren’t going to do anything else but they wanted to do some more blood tests on me so I had to go back out into the waiting room for a bit. Oh, how I sobbed and sobbed and all the women in the waiting room were so glad it wasn’t them. We met back with Dr. Owen after my blood was drawn to discuss the plan. I asked them if they could try another blood transfusion and he said he could try but it probably wouldn’t work. His choice was to do nothing. I asked, “But if you do nothing won’t my baby die?” And he said yes. He had given up on my baby even while she was still fighting. I insisted that they try one more blood transfusion, she was worth it to me. Of course she was worth trying to save, my precious baby girl. He said he had to discuss it with the other MFMs first, this decision of whether my child’s life was worth giving the IUT another try. He came back and said they would try one more transfusion the next morning, but it was almost pointless. She was going to die. Josh and I were devastated. Nothing in the world can prepare you for that feeling.
That was Liam’s 4th birthday, February 7th, and we had to run by Publix on the way home to pick up some cupcakes. The lady who worked in the bakery was pregnant and asked when my baby was due. I told her July 2nd but she had no idea my baby would never make it to July. She congratulated me and told me she was having twins. I wanted to die. After that we went to Toys R Us to get Liam a birthday present. On the way to the monster truck aisle we had to pass by the baby girl clothes. Oh how my heart broke into so many pieces. My legs almost buckled beneath me. I didn’t know how I was going to make it through the next few days. I clung to God. Liam was oblivious and loved his cupcakes.
The next morning Josh and I drove to Birmingham with heavy hearts. As the nurse was showing us to our room she asked when my baby was due. I told her and she said, “Oh how exciting! You might have a fourth of July baby!” I told her the baby would never make it to July and I wept as she showed me to our room. When we got to the room she tried to listen to Lucy’s heartbeat, but she couldn’t find it. She moved the doppler all over my belly and still nothing. My heart sank. I held my breath. She went and got the doctor and he brought an ultrasound machine with him. And there she was on the screen, my perfect baby girl, dying in the place where she should have been the safest. The doctor looked at her heart and it was barely beating- 60 beats per minute. The image of her little heart struggling to beat has been the hardest one for me to get out of my mind. It comes to me at random times during the day and it slays me every time, regardless of where I am. Hobby Lobby, in the middle of a tutoring session, at church… her tiny little heart struggling to beat. The doctors said she was dying. They rushed out to get another doctor. I held Josh’s hand and we prayed that she wouldn’t suffer. I told God that if she was suffering or if she was going to die anyway I wanted Him to take her right then, just take her. Just take her, Jesus. The doctor rushed back in and looked at the ultrasound and she was gone. He had taken her right when I asked. It’s a strange feeling to know your baby is in heaven. Dying is the biggest, most frightening journey we will ever take and my baby girl had just taken it without her Mommy. I felt proud of her in a way. I wanted to go with her.
I have never in my life felt heartache like I did right then. I looked out the window and the world was grey and stormy and I didn’t know how I would keep living in this dark place without my child. Josh wept and wept and we just stared at each other. Our baby just died. How was this happening?
I knew what was coming and I didn’t want to face it. Laboring and giving birth to her, knowing she was lifeless. Living a lifetime of missing her. Telling Liam and Asher that their baby sister was dead. Again, I clung to God and He whispered, “I will redeem it.” They induced labor a few hours later. I asked the nurse how I was supposed to give birth to my dead baby. Her eyes just filled with tears and she said nothing. It was so exactly like my other two births that it was horrific. Giving birth to my boys was probably the best experience of my life. This was the worst experience of my life. I kept thinking, “This cannot be my last birth experience. This cannot be how I go out.” Laboring, dilating, epidural, more dilating and waiting to meet my dead daughter. It was the hardest thing I have ever done. I begged God to sustain me every minute, I told Him I couldn’t do it. He bent low and held my hand and whispered, “I will redeem it.” I gave birth to her early the next morning. Usually, when you give birth to your baby you work so hard and push and push and finally when the baby emerges it is the most euphoric feeling. You feel superhuman, you love your baby so much at that moment. It was the exact opposite when I gave birth to Lucy. It was the deepest hell. I howled with sorrow when she emerged, knowing she wasn’t even there. The love was just as strong, but my baby wasn’t there. I worked so hard and I never got to meet her. I will have to live the rest of my life knowing that I have a daughter who I never got to meet, who isn’t here with her Mommy and Daddy and her big brothers that would have loved her so much. I have never experienced such pain. I didn’t know pain like this existed.
She died on February 8th and was born on February 9th, 2013. I always think it’s strange that she died the day before she was born. It’s supposed to be the other way around. They cleaned her up and brought her to us in a sweet little yellow dress and a crocheted hat. She was wrapped in a blanket and her head was on a tiny heart shaped pillow. She looked so much like her Daddy. She had the most beautiful mouth. Her fingers were long like mine and her tiny fingernails were perfect. I was 19 weeks along. She was 9 inches long and weighed 1 pound.
Our Lucy Dair Weathersby
My Mom came in and wept and wept over her. They took her away forever when we had finished spending time with her. We had to suddenly make decisions we never imagined we would have to make. “Do you want an autopsy? Do you want her body for burial or do you want her cremated?” At 19 weeks pregnant you should be making choices like, “What color should we paint her room? What kind of car seat should we get?” not “Should we cremate her or take her body?” It’s so strange to give birth and then be recovering in the room and have no baby, no joy, no new life there with you.
The doctors came and talked about our options for the future. They reminded us if we had another Kell positive baby, the baby would definitely die. They had never seen a woman’s antibodies attack the baby as aggressively as mine had. Every baby of ours has a 50% chance of being Kell positive. We mourned the loss of our daughter and mourned the loss of all our future children. We had wanted five kids. Our dreams for our family were shattered.
I remember when I was pregnant with Liam and Asher I had a reoccurring nightmare. In the nightmare, I had my newborn baby with me and my breasts were heavy with milk and it was time to feed him but I couldn’t find him. I knew he needed to eat and my milk was leaking but I couldn’t find my baby. I searched frantically but never found him. I always woke up frantic and terrified. I had that nightmare several times when I was pregnant with both of my boys, but never with Lucy. It happened in real life with Lucy. The next day in the hospital my breasts filled with milk and there was no baby to feed. This seemed so cruel, that my milk would come in to remind me to nourish my baby whose body lay cold. I was living a nightmare. Through it all I felt God’s presence there in the hospital room with me. He gave me courage and strength to get through the worst experience of my life.
Deuteronomy 31:6 Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.
Over and over again God told me that he would redeem it. I’m still not sure exactly how He is going to do that, but I trust Him. I would love it if you came along with me on this journey and maybe we will see how God redeems Lucy’s death and my childbirth experience. He is a sweet and loving God and I am choosing to trust Him, even now.