When Noah was born, the doctors had to get a second opinion on his head circumference, but eventually decided that it was “normal.” At his four month appointment, his pediatrician noticed the growing narrowness of his forehead. He suspected craniosynostosis and referred him to Seattle Children’s Hospital. A CT Scan resulted in his official diagnoses of metopic craniosynostosis. Like it probably hits all parents, it hit my wife and I like a ton of bricks. To make matters worse, I was fixing to deploy with the Navy for six months. We started to think about all of the potential developmental problems he might have, the difficult prospect of having our infant son needing plastic surgery just to have a normal life and the potential complications that could arise. I would also not be present for any of his hospital appointments and surgery while deployed – I would be in an information vacuum. After a couple of nights of crying, praying and talking to family, we did our best to set our fears aside to be strong for Noah.
Seattle Children’s Hospital is where he underwent his evaluation and subsequent follow-ups, and at nine months old, he underwent craniofacial reconstructive surgery to repair his condition. I was still deployed, but was able to get word from my wife that he had come through ok. Like all other kids that undergo the procedure, he had heavy swelling, and couldn’t see out of his eyes, but his condition eventually improved, and he was able to go home after about a week in the hospital. Less than 48 hours after discharge, however, my wife noted significant leakage from his incision, and he was rushed to the hospital to be diagnosed with a rare form of bone consuming bacterial infection that he came in contact with during surgery – it was the worst of all infections for him to get because it could have potentially reversed the results of the surgery and could create lifelong complications. He needed two more surgeries to clean out the infection in the week that followed and almost two months of antibiotics to adequately combat the bacteria.
From surgery to recovery, Noah always had the prayer chain hanging on his bed, and it was reminder to my wife and I that we were not alone. The support from Cranio Care Bears and Seattle Children’s Hospital was more than could have hoped for and quite the blessing. It was comforting to know that we weren’t alone in this process and that there were those that had us in their prayers. Noah is now in his third month of recovery, and he is as happy as can be. His head is round and smooth, and his pediatrician and surgeons are pleased with the progress. He has been, however, very nervous around doctors and nurses due to the traumatic nature of the surgeries and the continuous poking and prodding that was necessary to get through recovery. We hope that it won’t last.
Again, thank you to the Cranio Care Bears organization for thinking about the other families that experience the gut wrenching, emotional roller coaster that comes with the diagnosis, surgery and recovery of craniosynostosis.