OUR NAIT STORY
Our NAIT story began with the words “Something is wrong with your baby.” Those were the words the labor and delivery doctor said to us as they prepped me for labor. They had decided to do a last minute ultra-sound to make sure the baby was in position and at this time discovered a massive amount of water on his brain. The next thing I knew my husband and I were being transferred by ambulance to a hospital with a Pediatric Neurosurgeon an hour and half away. It was the longest, hardest ride of my life…nothing will ever compare. The only thing that kept me from losing my mind, was that I knew in my heart the baby was going to be okay. My pregnancy was perfect and he or she was so active. I knew there was life in this baby.
We finally arrived to the hospital and at 2:52AM our first baby, a boy, Cooper Matthew Dolan was born via C-section. We saw him for a brief few minutes and he was taken to the NICU. The next day he had an MRI and they confirmed that he had Hydrocephalus which they believed was caused by an Intracranial Hemorrhage. We were shocked. How was this missed? What caused the bleed? It was the next day during a routine lab test that one of his nurses noticed a lot of bleeding. They tested his platelets and they came back at 4K. That night they ordered a blood transfusion. His platelets went up to 14K and the next day were back down to 4K. That same day my husband and I were tested and our labs were sent in. The doctors talked to us about NAIT. It was all so confusing. We couldn’t wrap our heads around it. Two weeks later while Cooper was still in the NICU, the lab tests came back and it was confirmed that NAIT was the cause of this nightmare. One of the Neonatal doctors found a blood bank with the specialized platelets that we needed. Thankfully this person was willing to donate over and over again. It took 10 transfusions to get his platelets stabilized. That person will forever be our hero.
During all of this he had surgery at 2 weeks old to place a VP shunt in order to drain the water and allow is brain to develop. The scariest part of that was that his platelets had to be above 50K before they would do surgery. His platelets would go up and then come crashing down. We thought we would never be able to go home, but one day his platelets soared when a doctor suggested we do an IVIG transfusion while we waited for the platelets to come in. When the platelets soared they never came back down. We were finally able to go home with our baby boy!
Cooper now is a thriving one year old, but we are reminded daily of NAIT and how it has affected our lives. Cooper has had five surgeries to date, for shunt placement, revisions and skull reformation. He also has a nystagmus and strabismus that we work on correcting with eye patch therapy. We work with high-risk infant specialists and physical therapists to stay on top of his development. Parenthood for us was a rocky start but we are continually amazed by Cooper and all that he has accomplished.
As he was active in my belly, he is just as active as a little boy. He keep us busy with his constant crawling, climbing and laughing. He is so happy and for this we are eternally grateful. NAIT changed our lives, but it couldn’t take away our greatest joy.