When Reichen was 4 months old, we got the difficult news that he had had an in-utero stroke sometime late second trimester or early third. This stroke resulted in right-sided hemiparesis (weakness of the right side) which is a form of cerebral palsy. Our world became a blur of medical terms, therapy sessions, test results and doctors. Little Dude immediately showed us that he was a strong kid and that he was going to do things on his own terms. He started walking at 19 months and with the help of therapy has been able to participate in all activities with his friends his age.
At the time of his stroke diagnosis, we were told that we would most likely never know the cause. For years he, my husband and I all went through a number of tests and genetic counseling and were told that it was most likely a fluke and that a second pregnancy should not be affected. In the fall of 2010, we got pregnant with our second child and we were thrilled! My OB referred us to a high risk clinic just to get one more set of eyes on the case and that specialist decided to test us for NAIT. I was at work when I got the call where the doctor told me “Well, we now know why your son’s stroke occurred.” The answer was Neonatal alloimmune thrombocytopenia (NAIT). We also found that the stroke was due to an intracerebral hemorrhage (ICH). We had an answer!
For me the diagnosis was a mixture of relief and fear. I felt relief for my son that we knew what caused the stroke and that it was related to something that happened during pregnancy and not something like a blood clotting disorder that could potentially strike again. I also felt fear because I was now pregnant with a second child who has a very high possibility of having the same disorder that caused Reichen’s stroke. It was an emotional day for me and my whole family as we worked to comprehend and process the news.
My amazing medical team immediately rallied to get me started on the treatments that can reduce or prevent my unborn child from having the side effects of NAIT. Within 5 days of the diagnosis, I was started on the first treatment of IVIG. Since this is such a rare disorder, the hospital gathered together a team of specialists to determine how best to handle it and to make sure that each treatment was as effective as it could possibly be and that they were taking in the emotional side of things in addition to the medical treatments to ensure that everything was being done to have a healthy baby.
During the first days of the diagnosis, I also found the NAIT support group on Yahoo which was a tremendous relief. My first email was of panic as I started to try and learn something about this disorder that was so rare that I was the only person being treated for it in my hospital network. The other mothers on the list immediately answered back to calm my fears, let me know that others have been there and to answer questions. They have been a source of support as I asked questions about dosages, early deliveries and side effects.
Today Little Dude is almost 4 years old now and an amazing child. He has a wonderful spirit and is full of laughter and love. He does not give up on activities with his “righty” and constantly amazes us with what he does. After 3+ years of intense therapies, we have been able to scale back due to his progress and we just make sure to integrate the activities we learned into his playing. We have regular sessions to check-in and make sure he is progressing, but it is no longer the weekly activities that it once was.
As for the second pregnancy, we are still in treatment and are anxiously awaiting the arrival of our little girl in late spring 2011. I learn more about NAIT each day of the treatment & look forward to the day when I can update this story with the news of a remarkable little girl.