Lubbock, Texas, USA
Mommy to: Ethan Patrick, 9-4-07, 8,000 plt count, untreated and Ellisyn Drew, 9-9-09, 243,000 plt count, treated
In September 2007, my husband and I had a precious baby boy. During delivery my doctor had me push before I had dilated to 10 centimeters and before Ethan had dropped into the birth canal. Needless to say I pushed for a while and they ended up having to use the vacuum. When he arrived I was so happy to hear his cry. I just knew everything would be perfect. He was so handsome and he was ours! Fast forward 12 hours later, right before his circumcision was scheduled, and our doctors noticed petichia (blood spots) all over our sweet baby. Blood tests were run and it was determined he had a severely low platelet count (8,000 and the normal range is 150,000 to 400,000). Our sweet boy had to stay in the NICU for 6 days where he received platelet transfusions and IVIG (Intravenous immune globulin is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors). They did an ultrasound of his head and abdomen and noticed no hemorrhaging. Praise the Lord!!! When we asked what he had, and if we caused it, we were both tested and told that it was just a fluke and we didn’t cause his platelets to be low. It was so scary not to really have an answer to why our baby was sick. We accepted their assessment, not knowing any better. Praise the Lord Ethan was okay and his platelet level rose quickly and stayed normal and that he had no internal bleeding. We took him home and tried to put our traumatic experience behind us.
Fast forward to January 2009. We found out we were pregnant again and we were so excited. Our main prayer was to have a healthy baby that required no NICU stay. We wanted the baby to be able to room in with us in the hospital. Never did I imagine that what had happened to our little boy would affect this pregnancy. Little did we know that this pregnancy would be a journey!
When I was around 12 weeks pregnant, I switched doctors because I didn’t feel comfortable with the care my current provider was giving me. I had reminded him that our first born was born with severely low platelet counts and asked if there was any testing or anything I needed to do. My doctor said “Nope, not that I can think of”. I felt something was off. For some reason I felt that I needed to do more and find out more information. I switched to a different doctor and told him about my previous pregnancy. He was very perceptive to my story and told me that we needed to do some research.
When I was around 18 weeks pregnant, I was called by the nurse practitioner at the high risk doctors office. She told me that my husband and I needed to have our blood drawn to rule out us causing the baby’s platelets to be low. I told her there was no need because they had drawn our blood when our son was born and found that we carried no antibodies to cause the babies platelets to be low.
I faxed her the test results and she called me back and stated that we were only tested for one or two antibodies and that there are lots of antibodies.
We were then told that we possibly had NAIT or Neonatal Alloimmune Thrombocytopenia. I was shocked, floored and scared! I had no idea that we could have a repeat of what my son had. As I started to do more research I started to become more scared but there was a glimmer of hope as I read that by receiving treatment, there was a 95% chance that I could have a healthy baby! The risks of having a NAIT baby are many. The main problem is the baby can have an intracranial hemorrhage either in utero or when born that can lead to serious complications, including brain damage and even death.
We went to see a specialist in Dallas who told us that if we did have NAIT we would need to start treatments. We started treatments when I was 21 weeks pregnant. The treatments involved me getting IVIG via IV weekly and taking prednisone daily.
At 23 weeks, we got our blood tests back but found out that the wrong tests were ordered. We had to have our blood drawn again and when it came back we found out that we had a 100% chance of having NAIT. We decided to continue treatments and we prayed continuously. I found the yahoo NAIT group. These ladies saved me. It was like having a hand to hold when no one else around me understood what I was going through.
I ended up having a total of 15 treatments, took prednisone daily, had two rounds of shots for the baby’s lungs, had gestational diabetes managed by insulin due to the prednisone, had twice-weekly non-stress tests and had numerous ultrasounds to check for bleeding. We decided to deliver at 36 weeks (4 weeks early) due to the continued risks of leaving the baby in the womb.
Our sweet little girl was born perfectly healthy. She had platelet counts of 243,000 and was able to breathe on her own. She only spent one night in the NICU. Our prayers were answered!! The treatments worked and I have no doubt that they saved her life. God is so amazing.
Though we have had a successful story, we are struggling financially. Our lifetime maximum on our insurance was $150,000, needless to say we blew through that during my first month of treatments. We owe over 500,000 from our own pocket.
All in all though I wouldn’t change one single solitary thing. You can’t put a price on life and my babies’ lives are priceless to me. They are my joy and my heart. I am so incredibly thankful and blessed to be able to be their mommy! My heart hurts for families that have lost angel babies due to this stupid thing called NAIT. It’s so senseless and unnecessary. I pray that one day there will be routine testing from the beginning and no family will have to go through the pain of delivering a child who has a severely low platelet count which could lead to ICH or death. My prayers are with all of the NAIT mommies. It takes a strong person to go though what we have. (((hugs)))