During my third pregnancy I started bleeding around 8 weeks. At this time, we had a one-year-old son at home (my first pregnancy was an early miscarriage of twins). I went to the emergency department for the bleeding, fearing the worst. We were so happy to see his little heartbeat fluttering away. Since I was bleeding, the doctor said they would give me RhoGAM®, since I am Rh-. This was news to me as I had not received RhoGAM® in either of my two previous pregnancies. I was so certain I was Rh+ that I made them re-draw my blood. Sure enough, it came back as Rh- again. I kept pushing back, confused about how this could happen. A nurse popped his head in the room and said, “I think you are just confused – you are Rh- but positive for antibodies, so that’s probably what you are thinking of.” That was the first time we were told I had antibodies, but no one in the hospital understood at the time what it meant.
It was a weekend, and they called my regular obstetrician. She asked if I would consent to the RhoGAM® anyway while we sort it all out. I said yes. My husband is in the medical field, and I have a vivid memory of the moment he connected the dots. His face changed while they were preparing the RhoGAM® injection. He looked at me and said “It’s too late.”
As it turned out, I have a partial D antigen which made my blood type come up as both Rh- and Rh+ depending on the sensitivity of the blood test. We ran the antibody type and screen and found out I had a low titer of Anti-S. I asked my OB if we could have more kids after this one, and she said, “let’s just get through this one first and see.” That pregnancy was stressful, because I found myself making my own treatment plan and twisting arms to adhere to it. How lucky we were to have a Coombs negative son (my husband was heterozygous for S), an induced VBAC at 38 weeks. After his delivery, my OB told me that I tested positive for Anti-E at my most recent type-and-screen. We would “deal with it” next pregnancy.
For my most recent pregnancy with our third son, I started and ended with low titers of both Anti-S and Anti-E (highest value was 4). I had several large hemorrhages, which were not caused by my alloimmunization, but my doctors believe my tendency to bleed in pregnancies is what caused my alloimmunization to begin with. Our youngest was born at 38w, also an induced VBAC, this time with no pain meds, just like I had hoped. After his delivery, I had retained placenta and began to hemorrhage. I was taken to the OR for an emergency D&C. I was so relieved that my doctor had done a type and screen for my blood two days before, so that the correct cross-matched blood was available to me immediately on the delivery floor. I would encourage all alloimmunized mothers to make sure their cross-matched blood has been ordered and readily available on the delivery unit.
After our last son’s birth, he struggled with elevated bilirubin and visible jaundice for about a month, but did not need intervention. Every day I am thankful for the miracle of my children’s health.
If you could say something to health care providers everywhere, what would it be?
Your alloimmunized patient may have become an “expert” on her disease, because she is scared, and wants to learn in order to help her feel more in control. Listen to her questions, explore her suggestions, and learn along with her. With rare diseases especially, a true partnership between patient and provider is essential.
If you could ask the scientific community to do or to research something, what would it be?
Tell the real story about patient experience. Right now, the few studies that are out there about HDFN outcomes are conducted in large hospital centers with strong protocols for disease management. Ask patients to share their treatment plan for a better representation of the reality of treatment quality across centers and countries.
What would you tell other parents dealing with alloimmunization & HDFN?
You have choices. You can choose to ask questions, you can choose your doctor, you can choose to advocate for your baby, and you can choose not to feel guilty.