Emily and Nathan’s Story

I was diagnosed in 2017 with my second pregnancy following the tragic loss of our infant daughter who died unrelated to alloimmunization. I was terrified as my OB told me we would hope to get my pregnancy to 28 weeks because my titer was already critical at 8 weeks gestation. He has never seen a critical titer in over 30 years of medicine and wasn’t up to speed with the current research. I was referred to a maternal fetal medicine specialist (MFM) who gave me a lot of hope. I had MCA scans starting every other week which became twice a week towards the end of my pregnancy. My son was born via scheduled c-section at 37.1 weeks. He spent 3 days in the NICU for jaundice but never needed a blood transfusion.

My third child did not inherit the antigen for which I had a critical titer (Fya). My titer for little c had always been low until late in my second trimester which is when we began weekly MCA scans. She was born at 38.4 and spent 9 days in the NICU. She was very jaundiced and needed 3 rounds of IVIG and 1 blood transfusion. We followed her hematocrit closely after being released but she never needed another transfusion.

I’m currently pregnant again and have started weekly MCA scans at 14 weeks.

Health care providers can help by taking the time to truly educate your patients as well as finding the latest research to make the best treatment plan. Having mothers as part of the care team builds trust and produces better outcomes. Please be humble enough to reach out to other doctors when you are out of your depth.

I would like like to better understand why some babies in different pregnancies from the same mother with the same titer are affected differently. I believe it’s related to the amount of sugars on each blood cell for the antigen being attacked. If researchers and scientists could identify why this happens, we could detect problems earlier in pregnancy so that doctors and parents could be more proactive with treatment planning.

I would tell other patients to find a doctor who is humble enough to share their experience with your specific condition. If they are out of their depth, find a new doctor. Your baby’s life is not worth risking in order to avoid hurting someone’s feelings.


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