I was excited when I found out my husband and I were both O+ and I actually laughed and said we won’t have to worry about that disease. Boy was I wrong. I developed anti-E antibodies in 2013 during my second pregnancy. Further testing revealed that I am ee and my husband is EE. All of our babies are guaranteed to have issues with blood incompatibility. Fresh out of college for pre-med (biology major, holistic healthcare minor, chem concentration), and having trained in medicine since 2006, I did what anyone would do, and hit the books to learn about my condition. I was able to use my university login and get access to articles that not everyone could. I was the crazy person who brought research papers with her to the doctors appointments, but it was so helpful. If you only take one thing away from my story, let it be that YOU are your baby’s BEST advocate.
Everything went great with my pregnancy. My original midwife told me she’s never had anti-E cause a problem in all of her years, but I had done my research so I knew to insist on a referral to see an MFM doctor. The MFMs saw me monthly and gave my midwife a care plan to follow. They were happy to answer any questions that I had. I compiled research and started writing down everything I could about antibodies. I was great at translating the “medical jargon” into plain English for others to understand. I was connected with a group of moms who also had antibodies and they loved having that plain English resource to help them understand what was going on. When I gave birth to my first antibody baby, I had 13 pages typed out. The L&D nurses were so impressed that they copied them and put them in my chart. They didn’t know about anti-E, admitted it, and asked me lots of questions. They were all interested and even did research on their own. It was the best anyone could have hoped for – more people being educated about alloimmunization and HDFN. What that medical team learned carried over to all of their other antibody patients, and that’s amazing.
When it came time for my son to be born, we had 9 people in the room including a team from the special care nursery. They took cord blood and ran all the right tests on him. They were cautious and said they had never had an anti-E baby before, but they were being very proactive and were happy to learn more about anti-E, alloimmunization, and HDFN. It was everything we could have wanted for our pregnancy and birth. My husband and I felt like we were in excellent hands, that our doctors really cared, and that they were on top of things. Unfortunately things did go as well for our 2nd sensitized pregnancy.
In late 2014 I became pregnant with my 2nd anti-E baby, a daughter this time. We saw the same midwife as before and the same MFM team. This time around though my MCA scans started to rise. We still do not know why. I still only had one antibody and my titers weren’t that high. My MFM was doing scans because titers aren’t an accurate indicator of anemia after a previously affected pregnancy, and because he had a paper showing that the most severely affected anti-E baby out of the study was born to a woman with titers of only 1:2.
In July, I got a 1.42-1.66 for the MoM score and had to return to the doctor in 2 days. I was crushed and terrified. I memorized the PSV numbers that mean a 1.0 and 1.5 MoM before going into the scan. I knew immediately when my baby’s PSV was over 1.5 – over the IUT number. The ultrasound tech knew, she knew that I knew, and tried to reassure me. I kept telling myself to keep it together until I got to the car. I asked the doctor who we would go to for the IUTs and what the next step was. I was offered a choice, University of Michigan or Ohio State University. After securing that appointment for 2 days later, it was back to trying not to cry in the office. I hate people seeing me cry. Walking through the halls out to the car was so hard, but I focused on not breaking down until I got to the car. I called my parents from the car crying. They came up and I started arranging care for the other two children. My next MCA scan the next day had scores of 1.37, 1.42.
While the doctors weren’t quite sure if it was from the antibodies or not, they decided that it was time to send me to the IUT doctor as a precaution. They also ran several other tests including ones for parvo, hemorrhage, and other causes of anemia. The IUT doctor saw me 2 days later and got a slightly lower reading of 1.4. While this doctor was brisk and abrupt, she still answered all of our questions. I never did end up needing that transfusion. She also gave me very specific instructions for delivery. She did not think that the baby would be severely anemic at birth, but she suspected that there was definitely hemolysis going on and that the baby would have issues with hyperbilirubinemia. The IUT doctor was adamant that my daughter would need her bilirubin tested from cord blood and that she must be put under lights immediately after birth. I remember her repeating twice, “Don’t wait for the results, get her under lights immediately.” Based on her recommendations and answers to our questions, we decided to switch hospitals from the one my midwife was at to the MFM hospital with the NICU. The IUT doctor sent me back to my regular MFM with instructions for continuing scans and when to return. Every 2-3 days I was being scanned until the numbers went back down and settled at 1.3. We then had weekly MCA scans until 36 weeks. The rest of the pregnancy was complicated by the baby being breech and a different doctor tried to force me into a C-section. I refused, and came in on my original induction date given by my MFM. Baby was head down and we induced. She was born on September 14th, 2015.
This delivery was at a different hospital, and treated completely differently than my last delivery. If words like cautious, proactive, and happy characterized our previous delivery, shock, frustration, and helplessness are the words that characterized our last delivery. While our first alloimmunized pregnancy had 9 people in the room at delivery, this time there were only 2 people – a CNM and a labor and delivery nurse. When my husband relayed the IUT doctor’s instructions and asked about cord blood testing we were told, “We don’t do that here. It’s not policy.” We were absolutely shocked. How could this be when we had been seen by high risk specialists for the entire pregnancy? This wasn’t a normal birth, this baby was suffering from Hemolytic Disease of the Fetus and Newborn. We knew for certain that she had the antigen, and based on my MCA scans that she was mildly anemic and definitely affected. The neonatologist that did check our daughter out after birth said that it was the hospital’s policy to run a bilirubin test at 24 hours old, no sooner. When we relayed the IUT doctor’s instructions, he said that because they weren’t in our electronic chart he could not follow them. We were so frustrated and we watched as our daughter turned yellow over the next few hours. We had asked the neonatologist to call the MFM office and to come to check on the baby again. We just wanted the doctor at this hospital to follow the instructions from our MFM and the IUT doctor, but no one was listening. We felt helpless and isolated. We repeatedly told the nurse that the baby was getting more yellow. Finally at 1am the neonatologist agreed to run a bilirubin test even though she was less than 6 hours old. My husband and I always felt like it was because it was the middle of the night and he was tired that the neonatologist agreed. We also felt vindicated when 30 minutes later the neonatologist ran back into our room with lights and a team of people who started drawing more blood and getting her phototherapy unit set up. The neonatologist apologized to us, but we will never forget his “Oh crap” moment when he ran lights into our room and the hospital was suddenly alive with people working on our child. It was one of our worst experiences, and it didn’t have to happen. We had all the research, we had all the facts and recommendations from our doctors, but no one was listening. We were advocating hard for our daughter, and we didn’t give up. I am so glad that we stood our ground, we were persistent, and we knew what our daughter needed. I hate to think what would have happened if we hadn’t.
Our youngest daughter is 4.5 years old now, but we still remember everything from her pregnancy and birth. Our birth experience has influenced our decision to have more children in a negative way. While we both wish that things had gone differently, we are grateful to have a healthy, happy Kindergartner on our hands. Our family is committed to changing the experience for other women as we continue to support and minister to alloimmunized women in a variety of ways.
During this pregnancy, I started working on the book again. I created printable sheets for moms to use to track their care based on what numbers I tracked during my pregnancy. I’ve posted numerous copies over the years of both the printables and they just keep getting better and better. I finished the 60+ page book in 2016. One of the things that I heard over and over was that women wanted a website just for them, where they could go to learn about antibodies in general and pages for each specific antibody. I decided to go ahead and create the website and add pages for each specific antibody. It ended up being another 58ish pages that were written and created from scratch. Every antibody from D and Kell down to Gonzales and Vd has its own page. Everyone should be able to find their own antibody and be able to pull at least 2 articles about their antibody up. , but then put it on a website. Thanks to a generous donation, I was able to purchase the domain www.allaboutantibodies.com and went live with this information to the public, not just the women in a private Facebook group.
There are well over 300 references from peer reviewed medical journals that can be found on my website. All of which can be printed and taken to your doctor to help decide your care. This has been a labor of love. A great, big, pain in the butt, labor of love, but I didn’t stop there. I went and attempted to improve the Wikipedia articles, which led to me reaching out to a Wikistar and future OBGYN about antibodies during pregnancy. This spurred a great discussion and got the outdated Wikipedia articles updated. I did what other moms have done and ran a slideshow about antibody babies at our church’s blood drive – and people loved it. They sat and took notes! At the suggestion of some women I’ve created an Instagram, and Facebook page to reach more women publicly.
Being diagnosed with alloimmunization is NOT a curse – it has been a BLESSING to be able to help so many other women. Please join me by sharing. Share on twitter, share on your personal Facebook page (make it a public post), reach out on Instagram. WE are strong and WE will all fight for the antibody babies everywhere.
I am determined to spread awareness about alloimmunization/isoimmunization. I want all women, everywhere, who are diagnosed with this disease, confused and searching for information, to find out about antibodies in pregnancy and HDFN in an easy to understand format. I want women to feel like they can be walked through this disease every step of the way and to know that they are not alone. I want every woman to feel empowered to share her story and generate change. I firmly believe that moms are the best advocates for their babies. Fight for the right care for your little ones, if you don’t, who will?