I had my first son, James, in 2019. I did not know my blood type and I certainly had never heard the terms “alloimmunization” or “hemolysis” or even “bilirubin.” I had a RhoGAM® injection at 30 weeks and never gave it a second thought (in fact, I kept calling it “Rogaine” until someone gently reminded me that was a male hair loss treatment!).
James was born at 38 weeks, and we almost immediately knew something was wrong. It turned out that he had hyperbilirubinemia and was extremely anemic. After running some bloodwork, the neonatologists informed us that his red blood cells were breaking down at an alarming rate. He spent twelve days in the NICU receiving intensive phototherapy and he had two blood transfusions. Miraculously, he had no further issues. Had he not been born two weeks early, his condition would have been far worse.
When I had an antibody screen a few months after giving birth, my OB called me to tell me I had anti-D and anti-C antibodies, which explained why James had been born with HDFN. He did not know why, but it seemed the RhoGAM® injection was not effective for me. He went on to explain that all of my future pregnancies would be affected.
I was terrified and sad. We wanted to have more children, and I was left wondering whether it would be too risky.
A few months later, we sought out the Maternal Fetal Medicine specialists at Duke University to gain a second opinion, and they allayed so many of our fears. Sitting down with doctors who routinely treat patients with high risk pregnancies put my heart at ease. They were not spooked by my disease or by HDFN – and they were among the few specialists in our region who regularly performed IUTs. They assured us that it WOULD be possible for us to safely grow our family, and that while my pregnancies would no longer be easy, they would be with us every step of the way.
This past April, we welcomed our second son, Liam, after another affected pregnancy. We made it to 29 weeks with no signs of anemia, so I consider myself lucky, but we did have two IUTs: one at 30 weeks, and the other at 32 weeks. During the second IUT, Liam became bradycardic, which led to an emergency c-section. We were shocked and surprised, as we were not expecting to meet him that day, but I can’t wait to tell him what a little warrior he is! He spent 31 days in the NICU and received three blood transfusions. Now, he is a chunky, happy four-month old, and we could not imagine our lives without him or his brother.
Do you have anything you’d like to say to health care providers?
To the high risk OBs: You assured us that my antibodies would not prevent us from growing our family. You gave us the confidence to step out courageously and say “yes” to the adventure of another pregnancy. Without your expertise, your years of research, and your genuine care for your patients’ welfare, we may not have done it.
To the OB nurses: You held my hands when I was laboring, pushing, when the epidural needle was going into my back. You surreptitiously handed me tissues when I started crying but didn’t want anyone to see. You stood by my side when they delivered the news that my baby was in distress and needed treatment and I was more scared than I’d ever been in my life. You are doing incredible, life-changing work.
To the NICU nurses: You cared for my babies in their very first moments. You comforted them and rocked them when I wasn’t there to do it myself. You made me a card stamped with my baby’s footprints on Mothers’ Day. You sat with me when I cried over disappointing test results or a Brady or D-sat. You took my middle-of-the-night phone calls seeking updates and encouraged me to “call anytime,” and you really meant it. To this day, you still celebrate our children’s milestones and check on them on their birthdays. We will remember your names and faces forever – and we will tell our boys about you.
What would you like to ask the scientific community?
– Can a mother with an affected pregnancy receive IVIG?
– Is there a way to prevent hemolysis EVEN IF the mother has antibodies? Ie, what, if any, preventative treatments are available? Or is an IUT the only way to treat a baby who starts to become anemic?
AHF: Current Research and Clinical Trials
– If a mother has an exchange transfusion while she is pregnant, can that get rid of the antibodies? Does that “drain” the antibodies out of her body?
– Do antibodies subside after a certain amount of time? E.g., if a woman waits 5-10 years before getting pregnant again, do the antibodies decrease or go away?
AHF: Antibody Evanescense
What would you tell other parents?
– Ask as many questions as possible. You are NEVER being annoying by asking questions. The more you know, the better you will feel. And advocate for yourself! If your provider tells you that you can go two weeks before needing another MCA doppler but you would feel more at ease if you had one every week, speak up.
– If you are not comfortable with your provider, seek out another one! This does not mean that you are trashing that provider or practice, or that there is anything wrong with them (or you!) But going through a high risk pregnancy is hard enough, and you need to make sure you feel completely comfortable and confident with the care you are receiving.
– Seek support from mothers who have had similar experiences. Dealing with an affected pregnancy can be extremely sad and lonely. It is a rare condition and it is hard to explain, so a lot of people don’t understand it (and as such, don’t really grasp how hard and scary it can be). Reach out to anyone and everyone you think will support you, especially if they, too, have dealt with an affected pregnancy.