Our story began a little over 3 years ago when our oldest daughter was born via urgent c-section and quickly found to be in critical condition with full body bruising, petechiae, and a small brain bleed.
Hope with her two daughters.
We had a seemingly normal and easy pregnancy but all of that came to a drastic halt at the discovery of a condition called Neonatal Thrombocytopenia. Immediately after birth, Finnley’s initial CBC revealed that she had a platelet count of 7,000. A normal, healthy newborn should have anywhere between 150,000-400,000. Critically low platelet levels put her in danger of spontaneous bleeding, in particular, brain bleeds. After several attempts at random donor platelets, doctors soon concluded that the best option for Finnley was to receive an infusion of maternal platelets so that the antibodies in her system would stop attacking and give her body long enough to create its own platelets while the antibodies created during pregnancy died off. It was then that the decision was made to life flight her to Texas. At less than 2 days old, we watched our daughter board a helicopter and fly away. It was gut wrenching to say the least. Her fight for life continued on for 10 days in the NICU where, in total, she received several random donor platelet transfusions, blood transfusions and IVIG infusions—all of which were possible thanks to the selfless donors that give their time and blood so that others may live. It was an extremely scary time for us as we watched her platelets rise after infusions, hoped and prayed for her counts to level out and then time and time again watched them plummet to dangerously low levels. Although she ultimately needed my own platelets, it was the donor platelets that bought us time and kept her counts out of critically low ranges.
The rest of our story is played out when you fast-forward to April 2012 when we found out we were pregnant with our second daughter. After extensive research and meetings with specialist, we were told that we would in fact have to face NAIT anytime we chose to have another baby. The silver lining to this otherwise devastating news was that there is in fact a treatment plan for NAIT pregnancies once the condition is known to exist. For most, treatment consists of infusion of IgG and oral Prednisone. IgG is yet another blood by product that is collected anytime donors give plasma. It takes thousands of donors to create a dose of IVIg. There is still a lot to be learned about the treatment and depending on which doctors you see, you get widely varying versions of this treatment. First and foremost the treatment designed for the pregnancy will depend on your prior history and severity of NAIT. Due to Finnley’s brain bleed occurring at birth, rather than in utero, we were considered to be in the “Standard Risk” category. Once our pregnancy reached 10 weeks gestation, I began weekly IVIg infusions to protect our baby. At 20 weeks gestation, the infusion dosage was doubled and split between two weekly infusions. Ultimately our final layer of protection came at 28 weeks when I began taking Prednisone daily. Our second daughter was born via scheduled c-section at 37 weeks—the risks in a NAIT pregnancy are significantly increased towards the end of pregnancy and therefore many doctors opt to deliver these babies early. Camber was born with a platelet count of 165k—SUCCESS!!! She spent only a few hours in the NICU receiving a single dose of IVIg to help ward off a large drop in platelets following her birth. After a standard stay in the hospital we brought home our second NAIT miracle with a very different story to tell.