Adam was born on Monday, January 20, 2014 with a normal pregnancy and delivery. As soon as he was born you could tell his head was not normal it was elongated and narrow with a point out the back and a ridge on the top of his skull. By the time the hospital pediatricians saw him and checked him out as a new born, they had told me they think he has craniosynostosis and I would need to make an appointment immediately with our family pediatrician.
I had never heard of “craniosynostosis” nor did I know what exactly it was or how you spell it!!! Once seen by our family pediatrician we where referred to a neurosurgeon at Geisinger Medical Center in Danville, PA. The neurosurgeon (Dr. K) confirmed that he had sagittal craniosynostosis just by feeling his head no CT scan. Dr. K suggested performing reconstructive craniosynostosis sagittal endoscopic surgery (less invasive surgery two small incisions). Dr. K was very informative about the surgery and what may or could happen.
Adam’s surgery was scheduled for Monday, March 10, 2014, he was 7 weeks old on the day of surgery. The surgery took about 2 1/2 hours, he was in a lot of pain Monday but the staff in PICU were excellent in caring and keeping his pain under control. Adam did have to have a blood transfusion because of loosing so much blood during surgery, which we where told could possibly happen. The staff/doctors did warn us that his eyes may become black and blue and swollen because of the surgery, luckily Adam did not have any swollen or black and blue eyes. 24 hours after his surgery he was better with pain and swelling of the head and they discharged us by the afternoon on Tuesday, March 11, 2014, he only spent one night in PICU. His head was sensitive for about another 3 days, but by Friday he was doing excellent! Immediately after surgery his head had drastically changed in shape alone with just surgery! He had his post op appointment and his head incisions where healed and he was able to go for his casting for his helmet (March 25, 2014). Starting on Thursday, April 10th, 2014 Adam started his helmet therapy with a starband helmet. We gradually introduced him to wearing his helmet because he will need to wear his helmet for 23 hours a day.
At first he really didn’t care for us taking the helmet on and off, surprisingly by day 5 he is doing great with it. The orthopedic doctors where absolutely great with him and told us, yes he will adapt to the helmet quickly, which he has! We are eager to see how long Adam will be wearing his helmet for and to see the change the helmet makes to his head shape. It is amazing how quickly his little body handled and responded to the surgery and recovery. I wanted to share my story with others who are learning about craniosynostosis. It is a good feeling that you can resort to a website to learn and chat with others who have undergone the surgery and experience of craniosynostosis.