I have experienced four Kell sensitized pregnancies. All four babies were attacked in the womb by my extremely aggressive anti-Kell antibodies but only three of the babies survived the attack. My hope is that other families can learn from our story so that no baby ever has to lose his or her life to HDFN.
My first two pregnancies were textbook, low risk pregnancies (besides some severe morning sickness for me but that’s still considered normal) and both ended with healthy boys at 41 weeks. We had no idea that our next pregnancy would be a completely different experience. We got pregnant again and our baby was due in the summer of 2013. I had my normal first trimester blood work done at six weeks and at nine weeks pregnant my husband and I went in for the first ultrasound. We were nervous, as usual because we knew how common first trimester miscarriages are. We both sighed with relief when we saw our baby moving around, full of life. She had a perfect heart beat and was measuring right on track. My husband left to go to class after the ultrasound was over (he was in grad school at the time) and I met with my OB. Right when he walked in the room I could tell by his face that there was a problem but I couldn’t imagine what it was since I had just seen the baby on the ultrasound and the tech said everything looked perfect. Dr. C said, “There’s a problem with the blood work.” I had no idea what he was talking about but he explained to me that in the first trimester all pregnant women are tested for antibodies and mine showed up positive for anti-Kell antibodies. I had never heard of these antibodies before and he tried his best to explain how my body had reacted to being exposed to the Kell antigen (apparently when giving birth to my second son, Asher.) He said they would test my husband for the Kell antigen and if he was positive, then the baby could be positive and the consequences could be “dire.” I was terrified and confused and left with a racing heart.
My mom was watching my one year old and three year old boys while I had been at my appointment and when I pulled up into her driveway I saw them running in her front yard in the last rays of the setting sun. They jumped and tumbled and chased each other around, so healthy and so full of life. I felt a stab of fear, surely I wouldn’t lose one of my own children? This baby was so healthy and full of life at the moment, just like her big brothers. I absolutely COULD NOT fathom losing one of my children. I tried to explain to my family that there was a complication with the pregnancy, even though the baby was perfectly healthy and everyone, including me, felt confused and scared. As soon as I got home I tried googling anti-Kell antibodies but was disappointed by the lack of information I found. I read the Wikipedia article and searched for more, desperate to understand what my baby was up against, desperate to keep my child healthy and safe. There was a forum on Babycenter where pregnant women with antibodies could chat, so I read back through all of their past questions and tried to get more information about anti-Kell antibodies. I was terrified.
Over the next few weeks the blood work came back and revealed that my husband was positive for the Kell antigen (which we expected since I had never had a blood transfusion) and he was heterozygous, which meant that our baby had a 50/50 chance of being Kell positive. My antibodies could only hurt the baby if she was Kell positive like her Daddy. I called my OB back when I realized I didn’t know what my titer was and he told me it was 1,024. Anything 4 or over is considered critical so this was terrible news. I had a feeling my baby was Kell positive and was in danger. When I was about 14 weeks pregnant I had my first appointment with my MFM (high risk pregnancy specialist) and was expecting the doctor to inform me about my condition and to have a good plan in place to keep my baby safe. When I arrived the doctor didn’t know what the critical titer for Kell was and he was very nonchalant about the whole thing. He told me since it was my first sensitized pregnancy that the baby would probably be fine and they would start MCA scans between 22-24 weeks. I knew from other women’s discussion threads on the internet that most doctors start MCA scans by 18 weeks. MCA scans are ultrasounds that check the baby for anemia. I was uncomfortable starting them so late with such a high titer. I asked the doctor why we wouldn’t be starting them earlier and he said babies usually don’t become anemic that early and there is nothing they can do for them before 20 weeks if they were anemic anyway. I had also read about other women with anemic babies much earlier than 20 weeks and they had received intrauterine blood transfusions as early as 16 weeks to save their babies. This doctor disagreed and said blood transfusions cannot be done before 20 weeks.
I asked about plasmapheresis and IVIG, treatments I had read about that can be done to the mother’s blood to reduce the impact of the antibodies on the baby. He said the treatments are experimental, they don’t work and they would not be needed anyway since this was my first sensitized pregnancy. I was scheduled for a level two ultrasound for 16 weeks and sent home. I felt quite defeated and anxious, like we were just waiting around doing nothing while my baby was being attacked by my antibodies, getting sicker and sicker. We had also found out that we were having our first baby GIRL and we were thrilled! We told our parents and our boys when we got home and they screamed with excitement and joy. We decided to name our daughter Lucy Dair.
At 16 weeks I went back for my anatomy scan and level two ultrasound. I was sure they would be doing an MCA scan to check the baby for anemia. This time I had two new MFMs and they told me there were 11 different MFMs in all and I might get a different one every time I had an appointment. They scanned my baby girl with great attention to detail, looking at each organ carefully. Heart, spine, bladder, all ten fingers and toes, brain, bowels and bones. Our daughter looked perfect, they said, and was measuring a couple weeks ahead. No signs of anything wrong at all. I asked when they would do the MCA scan and they said they would not be doing one that day. I asked them to please do the MCA scan because we couldn’t see if she was anemic unless we did that one specific test. They refused and said there were no signs of trouble and my baby was fine. If they had listened to my pleas and done the MCA scan that day, my baby girl might have survived. She was very anemic at the time, but anemia cannot be detected on ultrasound unless they do an MCA scan. I was sent home and told to return in a week and a half. I felt extremely anxious because we had no idea whether my baby was anemic or not and my titer was very high.
My next appointment was at 17 weeks 6 days. I met with yet another MFM who reassured me that my daughter was fine since it was my first sensitized pregnancy. I asked if we could please do an MCA scan and the MFM told me they would do one sometime between 20 and 24 weeks. I protested as politely as I could but at that moment I decided that I would not leave the office until they had scheduled an MCA scan for my baby. I sensed deep inside me that she was not doing well and we needed to check her for anemia. The doctor and I went back and forth for about 30 minutes and I finally asked if I could speak with her superior. She left the room and came back a few minutes later. The head MFM had agreed to do an MCA scan right then to set my mind at ease. I was so relieved. The doctor scanned the baby and said she looked perfect, no signs of hydrops. Then they did the MCA scan and the room fell silent. My baby’s first MoM at 17 weeks 6 days was 2.5, which meant she was EXTREMELY anemic and probably on the verge of death. Once the baby’s MoM gets to 1.5 the doctor is supposed to perform an intrauterine blood transfusion to treat baby’s anemia. The MFM checked Lucy’s belly again and when he looked closer he found a pocket of fluid he had missed earlier…the first sign of hydrops. I was terrified but relieved that we had caught the anemia before it was too late. The doctors said the only way to save my baby was to do an intrauterine blood transfusion on the baby the next day. They had only done one IUT this early before.
The next day was a blur. They gave me a light sedative but I was awake for the whole procedure, worrying and praying for my precious girl. Her beginning hematocrit was 6 and they put 10 ccs of blood into her belly to absorb slowly and 10 ccs of blood into her cord to alleviate some of the anemia right away. The doctors were so relieved and said that the IUT went much better than they expected. I was hopeful that my baby would perk up after her transfusion and start feeling better, but I never felt her move again. I know now that once hydrops starts, and the baby has ascites (fluid build up) in the abdomen, the doctors should not put blood into the belly. They never should have done an intraperitoneal transfusion on Lucy, putting blood into her already swollen, fluid filled belly.
I was sent home and told to come back in a week and they would check on the baby then. I kept waiting for her to start moving again but she didn’t. My anxiety increased. I prayed and prayed that God would let my daughter live. About three days after the IUT I called the MFMs and told them my baby had not moved since before the procedure. I wondered if she even had a heartbeat. They said I could just wait until my appointment or I could come into labor and delivery so I drove to labor and delivery full of fear. Once I was in a room, the nurse brought in a portable ultrasound machine and the grainy picture came on the screen…my daughter was there, heart beating steadily. I wept with joy that she was still alive. She was barely moving and I asked for an MCA scan to check her for anemia. The nurse didn’t know what that was and said the baby was fine because she had a heartbeat. I insisted on having an MCA scan and the nurse said no but she did agree to go get the MFM on call. Yet again, it was an MFM I had never seen. He scanned the baby and said she looked fine and had a heartbeat. I begged for an MCA scan and he insisted it was not necessary. He went into great detail explaining why my baby was ok and why he did not need to do an MCA scan. The time he spent explaining all of that to me could have easily been spent doing the scan instead. If he had done that scan he would have seen that she was very anemic still and needed another transfusion right away. Instead, they refused and sent me home, telling me to come back for my next appointment at the end of the week.
I waited out the week full of fear and anxiety, never feeling my baby move. I took care of my one year old and my three year old on autopilot and cried out to God to save my baby Lucy. Finally, it was time for my ultrasound to check on baby Lucy. I was a couple days past 19 weeks pregnant. It was also my oldest son’s fourth birthday. My husband and I were devastated to learn that our daughter’s MoM was now 2.7, even higher than it was a week prior. She was severely anemic, wasn’t moving and the hydrops had spread. Her heart was showing signs of damage and the MFMs did not give us much hope. They gave up on her right then and there, even while there was still hope and said there was nothing they could do. We were going to lose her. My heart shattered. I felt like I couldn’t breathe or think. I asked if they could do another IUT and they said they could but it probably wouldn’t help. I asked what would happen if they did nothing and they said the baby would die. I begged them to please try one more time to save my daughter and they agreed to discussed it in another room. It still blows my mind that they didn’t automatically try to save her and their first instinct was to do nothing while she was dying. Finally the doctors came back in and said that they would try another IUT the next day but I shouldn’t get my hopes up. We drove home with broken hearts and tried to celebrate our son Liam’s fourth birthday with him. It was so hard to be happy with him while our daughter slowly died inside me.
The next morning we arrived at the hospital and I prayed and prayed. The nurse was cheerful and chatted about how we might end up having a 4th of July baby. I told her our baby probably wasn’t going to survive. We got in a room and the nurse listened for a heartbeat with her Doppler but there was nothing. No heartbeat. She tried again and again but couldn’t find a heartbeat. She rushed out of the room to get the MFMs. A couple of MFMs came in with an ultrasound machine and put the wand to my belly. My own heart felt like it was barely beating. There on the screen was my baby with a weak heartbeat, 65 beats per minute, 60 beats per minute…her heart was struggling to beat and it was slowing down. The doctors rushed out and came running back in with even more doctors. I prayed and told God that if Lucy was suffering and wasn’t going to survive, I wanted Him to take her right then, just take her. I didn’t want her to suffer. The doctor put the wand back on my belly and she was gone. Her heart had stopped. And just like that my life shifted and split. I felt like I was in another world that was full of darkness and pain like I had never felt before. And seven years later I still live in this other world, the one where I go on living while my daughter’s heart does not beat.
I was induced that day and gave birth to my beautiful daughter early the next morning. She was nine inches long and weighed one pound. Lucy Dair Weathersby was beautiful and perfect. She looked like her Daddy and her brother Asher. Throughout the whole labor, delivery and recovery I felt like God was there with me in the room and He whispered to me clear as day, “I will redeem this.” I knew that He could have saved Lucy and He could have saved me from experiencing all of this pain, but He didn’t and He has a reason for that. Regardless of how careless those doctors were with my baby Lucy’s life, God was not careless. He had a plan for Lucy’s life just like he does for my surviving children, and I have to trust that His plan for her is right and true and good.
The doctors told us we could never have any more living children unless we got pregnant with a Kell negative baby. We were told that if we wanted to have a biological child we could get pregnant, and just terminate around 16/17 weeks if we found out the baby was Kell positive. If the baby was Kell negative (50% chance) we could keep the baby and go on to have a normal pregnancy. That absolutely was not an option for us. The doctors told us our only other option was to use a sperm donor. I felt hopeless beyond belief and longed for my baby girl and for the future babies I would never have.
We had always wanted five children so this was a huge loss for us, even though we already had two healthy boys. Despite what the doctors told us, we knew that we were not done having babies. We looked at every option we had to grow our family, gathered information and prayed a lot. Our options were: use a sperm donor, try again naturally and do plasmapheresis and IVIG, adoption, foster care, use a surrogate, IVF with PGD or embryo adoption. God continued to grow the promise in my heart that He had made to me the day Lucy died, “I will redeem this.” I felt strongly that part of that redemption was a living rainbow baby. You can read more details on my blog but in short, the two years after Lucy died were pretty terrible. We went on to have two early miscarriages after losing Lucy (unrelated to anti-Kell antibodies) and then we experienced unexplained secondary infertility. We finally decided to adopt and that ended in a devastating adoption loss for us. In less than two years we lost Lucy Dair, Jude, Pax and Scarlet Mae. Each child precious and dearly missed.
We finally got pregnant again and our baby was due in the summer of 2015. This time I was determined to have the best doctors and the right care for my baby. I knew her only hope of survival was if I did plasmapheresis and IVIG treatments. I went back to the same group of MFMs that I had with Lucy and I listened to their treatment plan. Basically, they said my baby had a 50% survival rate and would only survive if she was Kell negative. One doctor laughed and said, “50/50….I’d play those odds in Vegas!” and they told me to come back at 16 weeks for my next appointment. If I had trusted their treatment plan my baby would be dead today.
Thankfully, I already had a treatment plan in mind. I had medical studies printed off to back my plan and I laid it all out for the doctors. I wanted to start plasmapheresis and IVIG at 10-11 weeks and start MCA scans at 15 weeks. I wanted MCA scans at least once per week from that point on. I had found an experienced MFM in Houston, Texas who would do any early IUTs the baby needed. The MFMs weren’t on board right away but eventually agreed and at 16 weeks we found out that I was pregnant with another Kell positive baby girl. My titer was exactly the same as it was with Lucy…1,024. We decided to name our second daughter Nora. Nora’s MCA scans showed that she was borderline anemic from the beginning (but nowhere near as anemic as Lucy was) and at 18 weeks, when her MoMs were between 1.4-1.5 I moved 11 hours away to Houston, TX to be treated by Dr. Ken Moise and his team of amazing doctors at The Fetal Center at Children’s Memorial Hermann Hospital.
Once I got to Houston I felt a huge weight lifted knowing my baby was in the best hands possible. Dr Moise was cautious and proactive and had decades of experience treating alloimmunization/HDFN and doing intrauterine blood transfusions. He was also kind and humble and he never got defensive when I questioned his decisions. Instead of fighting him to make sure my baby was given the right treatment, I felt like we could collaborate and work together as a team to provide the best care for Nora. I knew I could trust him. Nora had her first IUT at 24 weeks and 1 day and her beginning hematocrit was 26. That is very different from Lucy’s beginning hematocrit of 6 during her IUT. Dr. Moise always put blood into Nora’s umbilical vein and into her belly (no hydrops at all) and most of the time we were able to go three weeks between IUTs. She ended up having five IUTs and was born a few hours shy of 38 weeks. Dr. Moise had me take phenobarbital the last ten days of my pregnancy to help develop Nora’s liver so that she wouldn’t struggle as much with high bilirubin after birth. After she was born she was in the NICU for a few short hours of observation and the NICU doctors and nurses confirmed that she was perfectly healthy. No anemia, no jaundice, no distress of any kind. She weighed 6 lbs 15 oz and was 20 inches long. I was discharged from the hospital two days later with my miracle baby girl in my arms. To say God redeemed my pregnancy and childbearing experience is an understatement. I am so thankful for the miracle He performed and for Dr. Moise.
Nora was followed closely by a pediatric hematologist after she was discharged from the hospital. She had weekly blood draws to monitor for delayed onset anemia. She had a blood transfusion at four weeks and another one at five weeks old. She was discharged from the hematology department at 15 weeks old once she was making her own blood again and had cleared my antibodies from her system. Nora has brought so much light and healing and joy to our family. She has no lasting physical effects from her battle in the womb and is now a healthy five year old. Her story has inspired other women not to give up on their dreams of growing their families, even when it seems like the odds are stacked against them. In fact, one of the women who has been most inspired by Nora’s incredible story has been ME. I felt that deep longing for another baby a little while after Nora was born and there was such a big age gap between her and her brothers that we knew we wanted to give Nora a sibling friend close in age. Knowing how well the treatments worked with Nora, and seeing her thrive day after day gave us the courage to try for another baby.
I asked Dr. Moise if there were any MFMs closer to me that he could recommend and he suggested an MFM named Dr. Thomas Trevett in Atlanta (a three and a half hour drive as opposed to an 11 hour drive.) Dr. Trevett was incredible and he followed the same treatment and monitoring plan that we used with Nora. Our son was Kell positive just like his older sisters and needed 3 IUTs. He was born at 34 weeks and 4 days and spent two and a half weeks in the NICU. We decided to name him Callum Joseph Thomas after Dr. Kenneth Joseph Moise and Dr. Thomas Trevett, the men who changed our lives forever. After Callum was discharged from the hospital he was followed by a hematologist just like Nora was and he had 3 post birth blood transfusions. He is now a healthy two year old and we love him so much.
When Callum was almost two years old we decided that we wanted to try for our last baby and hopefully fulfill our dream of having five living children. We knew the process was long and risky but we truly felt like God was calling us to step out in faith again. I felt very safe with my MFMs and our treatment plan so we decided to try for one last baby. After two more early miscarriages we found out we were pregnant with another Kell positive boy who was due on Callum’s third birthday, September 13th. My anti-Kell titer at the beginning of the pregnancy was higher than it had ever been- 2,048. Once again we followed the same protocol as before- plasmapheresis and weekly IVIG treatments and IUTs once the baby became anemic. I am currently 35 weeks pregnant with a healthy baby who has had 6 IUTs so far. He will have his last IUT this week and then we will deliver at 37 weeks if the IUT goes well. We cannot wait to meet our last baby boy.
I hope other families can learn from Lucy, Nora, Callum and our baby boy and feel encouraged not to give up on their dreams of growing their family. For those of you dealing with alloimmunization and HDFN, never feel like you can’t question a doctor or that you don’t deserve to be a part of the decision making process when it comes to your child’s medical care in utero. Do the research, learn about the condition, and advocate for your baby, no matter how uncomfortable or scary it is. And for parents who have lost children, who live in the world of sorrow and upside-downness with me, this world where parents out live their babies, I want you to know that EVEN HERE we can find joy and beauty and healing over time. God can redeem even the deepest of sorrows. Look for the gifts that are all around, EVEN HERE.
If you would like to follow our story in more detail or if you would like to learn more about anti-Kell antibodies you can check out my blog Losing Lucy and Finding Hope.