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.