I found out that I was sensitized with anti-D during the first trimester of my second pregnancy. At the time, my antibodies were too low to titer. The nurse practitioner shrugged it off and assured me it was likely due to receiving RhoGAM after my first pregnancy 2 years prior – something I now realize is NOT true. My pregnancy was pretty uneventful until 28 weeks when I had more blood work. We discovered my titers had increased to 1:8. My OB then explained to me that I was sensitized and no longer needed RhoGAM. I was then referred to MFM.
I was unsure as to how I could be sensitized since I received RhoGAM as scheduled during my first pregnancy. When I think back to my first trimester, I remembered having a small amount of spotting that was likely old blood; I asked the nurse practitioner if I needed RhoGAM, but she said they normally only give RhoGAM when there is a significant amount of bleeding (something I now understand is also NOT true.) As an RH negative woman, it was never really explained to me the importance of receiving RhoGAM with ANY spotting or bleeding during pregnancy. We think that I either had a silent bleed that caused me to become sensitized, or the RhoGAM I received after the birth of my first child was ineffective.
I had a great MFM who was truly knowledgeable and explained to me how I would be monitored bi-weekly with MCA scans for the remainder of my pregnancy. At around 33 weeks, further blood work revealed that my titers had jumped to 1:128, which is way past critical. Our plan was to do weekly MCA scans, non-stress tests, and deliver at 37 weeks.
The hospital I was delivering at had a level 3 NICU; I felt confident I was in the best hands. Having read through the stories of other mothers, I knew exactly what questions to ask and familiarized myself with the standard of care. What I was not prepared for was how much advocating I would have to do after the birth, and how uneducated and neglectful the doctors would be. There was a huge disconnect between MFM and Neonatology. I assumed Neonatology would be informed about my case, but that never happened. It was felt like once the baby was born, I was out of MFM’s hands and was someone else’s issue to deal with.
When I asked to meet with the neonatologist before induction started, I could sense right away that this is not something she had experience with. She told me that they would take my baby to the NICU “just to be safe.” I had a very quick and successful induction, and my baby girl was born right at 37 weeks weighing 6 lbs. 1 oz. She was Coombs positive and spent the first night in NICU for monitoring.
The next day, when I called down to the NICU to check in on the baby, I was told her bilirubin was around 10.6 at 36 hours old. They were holding off putting her on any type of phototherapy because she had not reached the threshold yet. My gut instinct sensed that they were wrong. I told them this did not align with what I had read, that she needed to be on lights. I reminded them that she was high risk due to her gestational age and RH incompatibility. They informed me I was incorrect, and that she was only in the “medium risk” category. I was told that she was “progressing like any other baby with high bilirubin and that she was fine.” I felt very dismissed.
These NICU doctors were treating my baby as if she had regular newborn jaundice – NOT like a baby who had hemolytic disease of the newborn from aggressive antibodies. I continued to question them, and was told that my baby was NOT in hemolysis. (I now understand this is incorrect. Coombs positive indicates hemolysis!) At this point, I began to doubt myself and back downed. After all, they’re the doctors… what do I know? I now realize how incredibly wrong they were and that I should have trusted my mama instincts!!
Eventually they put her under minimal lights when her bilirubin started to climb higher. When that didn’t help, they switched to triple lights. She finally started to respond and her bilirubin came back down below the threshold level. (Still, they were treating her as though she was in the medium risk category, not high risk.) She spent 5 days in the NICU before they assumed she was ready for discharge. The red flag I missed at the time was that her bilirubin was still trending up after being off of the lights that day. Though she was just below the threshold level, she still should not have been discharged with bilirubin levels still rising.
When we were discharged, the doctor informed me to follow up with my pediatrician in 1-2 days, and if her bilirubin reached 18 then she would need more phototherapy treatment. I knew the doctor was incorrect, and that because she was high risk the threshold was actually 15. I was hopeful our pediatrician would have knowledge with this. We scheduled an appointment for the following day, but unfortunately, I could only get an appointment with the pediatric nurse practitioner.
The NP was obviously just as inexperienced with HDFN, because she based her evaluation on the NICU’s discharge notes. She did not test her bilirubin with a blood draw, rather with a bilirubin scanner which is not as accurate. It showed that her bilirubin had gone from 13.8 to 16.4. Because the NICU stated that anything under 18 was not of concern, she reassured us she would be fine and sent us on our way. She told us to follow-up again in 2-4 days. Had I waited this long, had I not been educated and blindly trusted these instructions, my baby could have had serious brain injury or even died.
The next morning, I immediately called the pediatrician’s office back and insisted I be seen by our doctor. Overnight we noticed our baby had stopped eating, was increasingly yellow, and had not had any urine output. The doctor took one look at her and immediately sent us back to the hospital for STAT blood work. She told us to pack bags, because our baby would almost certainly be admitted. Her bilirubin came back at almost 18, which according to her risk category, is the threshold for an exchange transfusion.
She was readmitted to the pediatric unit and placed under maximum lights for 24 hours. Thankfully, she responded to the more aggressive treatment. We were finally in the hands of doctors who understood her condition and took it seriously. I felt a sense of relief, but also so much anger! How could she have ever been discharged from Neonatology? Why were the NICU doctors so dismissive? How could they have been so wrong? It still infuriates me to this day, and this is why I feel the need to share my story, so that other families won’t have to experience what we did.
Always trust those instincts! Even after I felt we were in good hands with our pediatrician, we still had to advocate, and at this point I was becoming much better at speaking up. Our pediatrician did not feel it was necessary to continue testing her hemoglobin. She felt that our HDFN journey was over. I knew that this was not true, and that late onset anemia usually occurs in our babies. At 6-weeks-old, against the doctor’s recommendation, I requested to have her hemoglobin tested. The doctor was shocked to see it had dropped to a 7.4. She immediately referred us to a hematologist and we spent the next several days continuing blood draws. Luckily, her retic kicked in and the hemoglobin began to rise. Her little body worked so hard!
Our baby is now a happy, healthy 9-month-old. It was a scary journey, but this experience truly helped me to find my voice. I now know that a mother’s intuition should never be ignored. For any mothers who are on the journey, make sure your doctors always include YOU as part of your child’s care team!