Immediately after my first-born baby was laid on my chest after a 16-hour labor, all the nurses and my OBGYN knew something was not right just by looking at her. She had what I would later find out was fetal and neonatal alloimmune thrombocytopenia (FNAIT).
My daughter was covered head to toe in purple bruising and large red spots on her head from where the OBGYN had used a vacuum. Because of these visible symptoms, my newborn daughter was rushed to the NICU to figure out what exactly was going on.
It only took one simple blood draw to discover that she had only 11,000mcL blood platelets, when normally blood platelet counts in newborns should be around 150,000mcL. She received a platelet transfusion that night, and steadily, her platelet count came up. Unfortunately, at this time, we didn’t receive any answers as to why this happened and just fell into our new routine with a baby.
Learn more about FNAIT signs and symptoms
Finally receiving an FNAIT diagnosis
When I became pregnant again with my second baby, I was extremely fortunate to have a wonderful OBGYN. She made sure I first went to a high risk OBGYN to figure out why my daughter was born with a dangerously low platelet count. In doing so, she knew she could only provide for me after finding the answers we needed to keep my second baby healthy.
My first appointment with the high risk OBGYN gave me an immediate possible answer. I will always remember the experience of 30+ years in this wise OBGYN who told me that he was certain I had FNAIT. He drew out on a piece of paper what this meant and how, in my own simple terms, my platelets don’t like my baby’s platelets and ultimately attack my baby. He immediately sent in for the blood test that would require both mine and my husband’s blood to determine if I truly did have FNAIT.
Although the process of having that blood test was excruciating since it was right around the time of the COVID-19 outbreak and lockdown, we fought insurance long and hard to approve the lifesaving test. Because of this battle, I was told to go to a hospital to get my first IVIG infusion even before getting the test results.
I will never forget when I received the call from my high risk OBGYN while driving across my city to receive my first IVIG infusion. As I was merging onto a busy freeway, he told me that the test results show that I do in fact have FNAIT and he was extremely happy I was on my way to hospital. At this point, I was already 24 weeks into my pregnancy, well past the recommended time to start the IVIG infusions, which typically should start around 14-16 weeks gestation.
Delivery after being diagnosed with FNAIT
After 13 IVIG infusions, daily steroid medications, many blood draws, COVID-19 lockdown and taking care of a toddler, it was time to deliver my second baby via cesarean section. It is difficult to explain the level of anxiety and fear I experienced walking into the hospital that day, hoping that everything would be O.K. Thankfully, even after a few bumps in the road, I delivered a healthy baby boy!
I was able to be with my original OBGYN for the delivery and know that she will never forget me. Before being her patient and even after 15 years of experience, she never had a patient with FNAIT or had even heard of this rare disease. For a rare disease that only affects pregnancy, I believe it is vital that medical professionals in this field know about FNAIT, what to do to find the diagnosis and the treatment plan needed to keep both mom and baby safe.
