A few months into my 1 year old son Dylan’s life, the pediatrician commented that his head shape looked odd. He had us take Dylan to a plastic surgeon at the children’s hospital, who confirmed that our son had Sagittal Craniosynostosis. In simple terms, it meant Dylan’s soft spot was virtually closed up early on rather than taking its course over a year.
More than half of all cases involve the sagittal suture. The sagittal suture runs across the top of a baby’s head from front to back. The baby’s brain usually develops normally in these cases, but the head becomes abnormally shaped. The skull may become long and narrow or very flat and broad in front or back or on the sides. This depends on which suture closes prematurely.
So most likely, Dylan would have been fine if we left this alone, but doctors told us his already large (over the 90th percentile for his age and compare that to his height and weight which are under the 15th percentile) and abnormally shaped head would continue at that rate. To give our son a normal shaped head while we had the opportunity was a difficult decision given in involved cutting a piece out of his skull and that the surgery would take 5-8 hours. We decided to do it, but had to wait until he could better handle the anesthesia around the suggested 9 month range.
On June 29, 2009, Dylan went in for surgery. He was so happy in the morning even though we had to get him up at 5 in the AM and he hadn’t eaten since midnight. He was smiling at his nurses and doctors not knowing what lay ahead.
We were told that during most of the 5-8 hours that Dylan would be out, he would be resting on the operating table while the work would be done on the piece of his skull on a separate table. The piece would be taken out and have slits cut into it like venetian blinds. It would then be reinserted with those slits giving the skull room to grow normally. The incision had a zig-zag to it to help hair grow in better to mask the scarring. He would look fairly normal immediately after surgery except for being on drugs and having a large bandage wrapped around his head. After the first hour or so, the swelling would set in, swelling his eyes shut, which compounded with any pain felt despite the drugs would be the most traumatic for our son.
When it came time to hand Dylan over to the medical professionals for the procedure, I became very emotional. It was the most emotional I’ve been since my brother passed away. It was a definite moment of realization in my short time as a parent so far of the extent of my love for the little guy. We had all of the assurances from the doctors that they do these things fairly often, but they were cutting into my son’s friggin’ head.
To pass the time, my wife and our parents sat around talking and using the hospital’s wifi. I kept folks abreast of developments through my Twitter account.
We actually received the call sooner than we expected that they had finished. I hoped that was a good sign, and it was. Everything went well and according to how it was explained to us. It was very difficult to see him so swollen and the whine he had during his time in the hospital will stick with me. It was kind of drawn out and drugged up. He spent a day and a half in the PICU and another day for observation. By then he was off the major painkillers and opening his eyes again.
When we got home, he received lots of Tylenol. He seemed more annoyed than in pain. He not only had a bandage wrapped around his head, but the itchiness of the stitches, which dissolved and fell out over time. Luckily or not, he also had his first teeth coming in the week this was all going on, so he seemed to focus on the pain of his teething more than anything.
It has been about three and a half months since the surgery. We went for one successful follow up a month after. A few days ago, Dylan had a CT scan to check things out to make sure everything looked good. If it does, we shouldn’t need anymore follow-ups. Dylan has turned 1 and since his procedure, his hair has grown in well to cover up the scarring. His head has a great shape to it now, which seems like a weird thing to say, but that was the goal of this, which should make his life easier. No one wants to be that guy with the odd shaped head.