First Meeting with Specialists

Above: What Isaac's skull should look like.
Above: What Isaac's skull does look like.

Alan and I went together with Isaac to his appointment with Dr. Siddiqi at Primary Children's Medical Center. I was sick to my stomach all morning. I knew he had it and I knew some of what the surgery may involve. I was just waiting for professional confirmation.

We met with Dr. Siddiqi, the pediatric cranio-facial plastic surgeon. He said he was confident Isaac had Sagittal Craniosynostosis, and sent us to get a CT scan. On the way we passed the pediatric neurosurgeon who said, "Oh ya, he's got it," the moment he saw him.

Isaac did great during the CT scan and we were soon back in the doctors' office. They showed us the result and you could see a smooth white skull where there was supposed to be a line. Dr. Siddiqi sat right in front of me, looked me in the eyes, and said, "Are you ready for me to tell you about the surgery?". I was ready because of all that I had looked up, but I guess many mothers aren't and they fall apart when he tells them.

A 5 hour surgery, one hour of which my baby will be without his skull. They will remove it in 3 pieces - his forehead, the top of his head, and the back of his head. They will then cut and reshape it, put it together with disolvable plates and screws, and put it back on his head. He will have a zig-zag incision across the top of his head from ear to ear.

He will spend 1 to 2 nights in the PICU and then another 3-4 nights on the regular floor. He will lose a lot of blood and will need blood transfusions. We asked about using our blood, but they told us that you can get a better match from the blood bank. He will have a tube coming out of his head behind his ear to drain out blood and fluid. He will be on Morphine the first day, but by the third day he will only need oral Tylenol.

Follow up care will be minimal and he won't need a helmet or any special post-operative care.

We drove home in a daze. I was able to call a couple people that night and send a few e-mails, and then I lost it. I cried the rest of the night. This thing I am feeling is hard to describe but it is a very real weight upon my heart.