Valerie, James and Madison Parks
USA

Our NAIT Story

My pregnancy with my daughter began with nausea, all day everyday for the first 4 months. All of my doctor’s appointments went smoothly and I was repeatedly told she was a very healthy baby, and everything looked great. I was placenta previa, so we planned a c-section, until my 32 week check-up. It had completely resolved so we changed our plans to be induced on May 8th. On May 1st, we closed on our new home and began getting her room painted and set up.

At 11:00 pm on May 3rd, I woke up with an upset stomach. It didn’t take me long to realize it was getting worse, and when I arrived at the hospital, I was 5-6 cm and my water broke. I noticed instantly that it was green, and the nurse explained to me that it was thick meconium, and the NICU nurses would be in for the delivery to make sure she was suctioned really good, but there was no need for concern because the baby still looked perfect. Upon delivery, at 11:20 am on May 4th, she had a tight nuchal cord x’s 2, so that explained the stressor causing the meconium. At that moment, I heard my mom ask why she was so bruised. The L&D nurse explained that labor can sometimes cause bruising, and that it would go away within a few days. One of the NICU nurses present told me that she noticed a rash on her called petechiae and asked my permission to draw some blood from her just to be safe. I agreed.

They handed me my baby girl, and I instantly fell in love. She was perfect to me, but I still felt like something was not right. She cried non-stop for the next 3 hours. I just felt like something was wrong, but figured she was a baby, and that’s what they did! She latched on without any trouble and I nursed her for a long time. It was then, in my recovery room that the same NICU nurse came in and asked for my baby telling me her blood work came back abnormal and she needed to go to NICU right away for more tests. I was in shock.

After she was admitted, my husband and I went down to see her and find out what was going on. The neonatologist told me at delivery her platelet count was only 8K, and they were doing scans of her head to rule out any bleeds. I remember crying and asking what was going on, and no one seemed to know. They informed me that they would be calling in a neonatal hematologist from another hospital to assess her, and they drew large amounts of blood from me and my husband.

At 3 am on May 5th, the new doctor came in and explained that she was very hypothermic and they believe she may have something called NAIT. They were already treating her with platelet transfusions, but had to wait for our blood work to come back to confirm diagnosis. I felt like my world caved in on me. I went to see her the next day, and at 7lbs 9oz, so looked so big and healthy lying next to the 2 lb baby beside her. I couldn’t believe she was sick. The Doctor allowed me to pump, but would not allow me to breastfeed her. They told me that they were having a very hard time getting her to eat, and they may have to insert a feeding tube. I wanted to breastfeed my baby so badly. A nurse explained to me about koala care, where she lays skin to skin against my chest and we gave it a try. Madison rooted around and latched on to me, and began sucking, all on her own. The nurse was standing there with me, and as I tried I pull her off because of what the doctor told me, she told me to continue to feed my baby. She then called the doctor over to witness it. From then on, I was allowed to come, even between visiting hours to feed my baby. I am still so grateful to them for allowing me to do that.

Transfusion #1, platelets went up to 22K, but back down to 18. Transfusion #2, up to 80K, then back down to 60. #3, up to 200, down to 90. I felt myself feeling more and more hopeless. Coming home to her empty room and bed was the worst. Finally, on day #8, I asked if I could donate my platelets. The doctor was hesitant because I have chronic anemia, but agreed on the condition my iron wasn’t to low. Feeling like it was a hopeless cause, I gave more blood, and for the first (and only) time in my life, my iron was normal! I had to sign a lot of paperwork, and that afternoon, I donated my platelets. The day she received my platelets, her count was normal, but I prepared myself for bad news the next day as I drove back to the hospital. When I arrived, she wasn’t in her bed. A nurse was holding her, and she had a tub of water beside her. I walked up and the nurse said Madison was fussing so she has been holding her. She knew I was coming, and figured I may want to give her a bath before I put on her going home outfit. She then nodded towards the white dry erase board on the wall that said, “my count is still normal! I can go home today!” That day was also the day before mother’s day. I got to have my baby home with me on mother’s day. That was the best present ever.

We had several follow up visit to her pediatrician, and some with genetic counsellors, and hematology clinics, and now today, 5 years later, she is a perfectly healthy little kindergartener. I am just so thankful for the NICU nurse who initiated the blood work (who wouldn’t have been in there if there wouldn’t have been meconium). I am also so thankful that Madison didn’t experience any bleeds, and that my iron level was normal for that ONE day. I can really see how God had his hand on us throughout this whole experience. It has made my husband and I stronger, and made us appreciate some of the things we used to take for granted.

Valerie