Craniosynostosis is a birth defect that causes one or more sutures on a baby's head to close earlier than normal. In Jameson's case, his saggital suture closed prematurely not allowing his head to grow wide; thus creating a narrow bullet shaped head as his brain is growing.
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| Jameson's Sagittarius suture is closed |
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| Jameson's profile before surgery |
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| Top view |
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| Sweet baby James |
There are a number of different names that the condition gets referred as, most of which I have to Google to get close on the spelling, but scaphocephaly, sagittal craniosynostosis, etc., but basically it’s a premature fusing of the skull plates that doesn’t permit the brain to grow in the standard direction (the brain is pressing the skull forward/back instead of out/round).
We didn’t realize it before, but it happens in utero (no specific known cause). They find it frequently happens with large babies or multiples, so they suspect it may just be a matter of uterine space that creates pressure on the head that pushes the skull plates together.
The procedure involves removing a portion of the skull where the fusing has taken place and then “barreling” the skull to widen it. Immediately after the surgery, the head/skull will look wider. Then they largely let nature take its course in terms of the brain growth creating the proper pressure to keep the skull in the new normalized shape (just as an example, a baby’s brain at birth is only ~25% of its adult size vs 80% the final size at age 3). The incision is a Z shape in the top/back of the head, and they were confident that once his hair grows in that it wouldn’t be obvious to the eye unless he shaved his head.
While it’s somewhat common and relatively routine to correct as far as head surgeries go, Dr. Edwards made it clear that any time an infant is going under general anesthesia and/or receiving a blood transfusion, it’s not to be taken lightly. He actually said the most important part is making sure that there is a great anesthesiologist during the surgery. They have a permanent pediatric anesthesiologist team, a definite plus for expertise. There are risks involved, the most common issue being making sure the wound heals well and cleanly. The comforting thing is he estimated he’s done around 1,000 of these and never had a serious complication. He had one where the skull re-fused, but that was in a younger baby aged 1 month and they suspect that their healing process is so rapid that the cause was just that. In that case, they had to do a second surgery to reopen the sutures again.
To that point, Jameson’s age is pretty ideal for the surgery. He isn’t too young where re-fusing is a high risk and he isn’t too old where he would be mobile and at risk of bumping his head during daily life.
The recovery is longer than what we heard earlier: Jameson would likely spend 1-2 days in the Pediatric ICU, then be transferred to a more standard hospital room for monitoring for ~3-4 days. One side effect is that most kids have some swelling to the point where their eyes are swollen shut by the third day after the surgery. They said that kids are generally comfortable the first few days as they are on pain meds, and hearing/smelling parents is soothing for them. Hopefully a week after the surgery, he is well on his way to being back to a normal infant
Longer-term, they say there are no limitations on their activities (e.g. sports). No helmet is required post-surgery. We would go back for a checkup after a month and then every three months or so for a couple of years to make sure things are progressing properly.
After getting a couple opinions, we elected for surgery at Lucille Packards Children's hospital at Stanford to correct the closed suture. Surgery is scheduled for Tues March 26. We will arrive two days early for pre-op appointments with the neurology team and blood work.
