The Frightening Diagnosis
At her one-month visit, our pediatrician finally acknowledged that he thought Nicole's skull sutures might be closed after all. He sent us to a plastic surgeon, who gave her a CAT scan. The diagnosis came back: Nicole had craniosynostosis, a disease that causes the bones of the skull to fuse too early, distorting the head and face and squeezing the brain. Left un-checked, it can cause blindness and mental retardation, the surgeon told us. In Nicole's case, two of the sutures had closed: one on her forehead and one on her right temple, which explained why her face was being pulled to one side. "She's going to need surgery," he said.
We were floored by the news. Although we knew there was something seriously wrong with Nicole, we had never imagined that her condition was so dangerous. The doctor's description of the surgery scared us even more. The standard surgery for the condition involves removing part of the skull, cutting it into pieces, and fitting it back together, like a jigsaw puzzle. Dangers included blindness and even death; Nicole would be in intensive care for a week, and she'd require a blood transfusion. She'd have to have numerous plastic surgeries until she was about 6 years old. As if this weren't enough, the surgeon said he wanted to wait until she was 9 months old to perform the operation.
Then he sent us home with information on craniosynostosis, including pictures of children with the disease. I remember standing in the parking garage outside the doctor's office, looking at the pictures of children with bulging eyes and massively deformed faces, not believing what I was seeing. Kelly and I were both concerned that the doctor wanted to wait so long before the surgery. We wanted to help our daughter now.
Over the next couple of weeks, I looked on the Internet for all the information I could find about craniosynostosis. In the meantime, we had to endure visits with neurosurgeons and plastic surgeons, getting second opinions. One doctor was so insensitive that he discussed Nicole's surgery in a crowded hallway, made Kelly cry, and became hostile whenever I dared to ask him about other options. These were well-respected physicians who had helped other parents in our situation. We didn't think we could challenge their advice, but I couldn't help feeling there had to be another way.