Louisville, Kentucky, USA
My NAIT story began in 2002 with the birth of my son Zachary. We knew we were having a decent size baby so my OB had prepared us for the possibility of a c-section. After the Dr broke my water he noticed that there was a ton of meconium in my fluid (one of the worst cases he’d seen). I labored but the baby just wouldn’t descend so we opted for the section not realizing how lucky we were to choose that option and having a Dr that didn’t believe in trying to “force” a vaginal delivery. Immediately after the birth of our 8lb 11oz boy they noticed Zachary had a low grade fever so they did a CBC and discovered his platelet count was low at 53,000. They worried the meconium had caused infection so started IV antibiotics right away. His counts soon dropped to 47,000 and while the Pediatricians, Neonatologists and NICU staff discussed possible transfusions and treatment they never discussed NAIT. They did have me have blood drawn but I didn’t understand what it was for. His counts started to climb on their own so we were sent home w/ a count around 100,000. We would later find out that the blood work that was done on me was a screen for maternal antibodies which came back as “strong positive”.
In 2004/05 we decided we were ready for a second child and became pregnant quickly. I felt uneasy from the time I got a positive test and measured larger than date from my first exam at 8wks. In my gut I knew something was off and even though the blood work never showed anything strange I prayed it was twins (we have a family history). My Dr finally agreed for an early ultrasound at 18wks and we discovered that we had lost our baby due to complications of a neural-tube defect. We were devastated and sent to a MFM to consult. While reviewing our history I happened to mention Zachary’s low counts and he zeroed in on that and said we should be tested for NAIT. I was so overwhelmed by loss I didn’t think about it until I went back to the OB 2wks later for a check up and he wanted to schedule the blood work. At this point I decided to do some research online and at first everything I found was so technical I really had a hard time deciphering the information. The I found the NAIT support group. I spent my first couple of weeks reading old posts and getting a feel for things. When we finally received our test results my OB couldn’t even explain them to me because he had never heard of NAIT and had to read me the definition from a textbook. All we knew was that we had NAIT and nothing else.
By the time we consulted with an MFM I had learned enough from the group to know what questions to ask and what treatment would be appropriate for another pregnancy. While the first MFM explained that we fell into the 100% group he only treated NAIT patients with PUBS and transfusions. Thanks to the group I knew this wasn’t safe or right so I called the Dr who had first suggested the testing. He would only treat w/ IVIG if we had PUBS and counts were below 25,000. I was becoming desperate until I found my amazing MFM who told me over the phone he was totally on board w/ using IVIG to treat me. We consulted and he had experience w/ both NAIT and PUBS.
We became pregnant with our second son. We started IVIG treatments at 21wks. We did PUBS twice. The first was at 30wks because I was concerned about viability in case there was an emergent delivery. The counts were about 197,000 then. At 34wks we did a second PUBS to determine delivery date and there were issues w/ clots in the specimine tube so it was hard to know for sure what the counts were so the Dr transfused. The lung test cameback positive for maturity so we scheduled a c-section for 35wks. Trevor weighed 6lbs 11oz and had some preemie issues w/ BP and breathing so he was in the NICU for a week but his counts were over 200,000 so treatment was very successful.
Today they are big, healthy, crazy boys that are the absolute reason for living for us. Our NAIT journey was stressful but I would change nothing. My only regret is that I had a tubal during my last delivery because I would have gladly added another to our family knowing how well it all turned out.