Sagittal Stenosis

[Zee_RN, BSN, RN]

I'm not a peds nurse but this happened to a friend's daughter. She was diagnosed with "sagittal stenosis" -- a premature closing of the fontanels (soft spots). The skull could not then accommodate the growing brain. Her daughter required surgery to deliberately fracture the skull in such a way that the brain could grow and the skull would heal. The surgery is performed by a neurosurgeon. I'll see if I can find you a link.

[Zee_RN, BSN, RN]

This was supposed to be a reply to another thread! I don't know how it ended up as its own post! Sorry for the confusion!!!

[SmilingBluEyes]

It's called

Sagittal SYNOSTOSIS...and I know a LOT about it. My son was born with it in 1992.

If you have questions that I don't address here, just ask

-----I can probably help you answer a lot of questions, being an OB nurse and mom of a child who was born with this relatively rare condition...

"Synostosis" is a condition whereby the sagittal sutures of the skull of a baby are fused together and there are no fontanels or "soft spots"---

so the head is essentially like an adult head. The newborn's head will be mishapen ----often protruding in the front and back.....to a quite sharp point. The head also will appear elongated due to this. ON CT scan the brain will appear abnormally elongated, too, but RARELY does this condition result in any problem or abnormality of brain function ever.

It IS fixable by craniotomy. It sounds brutal. They neurosurgeons will cut open the baby's skull, remove a small plate of bone and then sew it back up, thus creating a HUGE "soft spot" that will close in due time.

They usually do this surgery on babies of 3-6 months of age, before they walk and move much. Babies recover well, but it is very bloody as you might imagine. My son needed a unit of blood post-op. It's common for that to happen so tell mom/dad to donate blood ahead of time , if possible, for transfusion.

Also, the surgery causes extensive swelling of the face, to the effect where one or both eyes is swelled shut. This is temporary and does not cause as much distress to baby as it does to mom and dad.

I was not a nurse when my son was born with this and had resulting surgery, so very unprepared for his appearance in the PICU afterward. They should have been better about explaining it all to us; I did get quite upset. My son's face was horribly swollen, he had a JP drain and a unit of blood hanging over his crib when I was permitted to see him. I was not prepared well for how bad it would look......but he recovered quickly, breastfeeding again within 24 hours post-op.

My son recovered completely and now is a healthy 11 year old boy. NO lasting effects except a scar along the midline sagittal line of his scalp. He would have looked MONSTROUS if no surgery had been done.

My guess is your friend's ped will refer them to a neurosurgeon for consult and likely surgery.

If there is anything more I can do or any questions I may answer, please don't hesitate to post here or PM me. I wish your friend well, tell her hang in there. Best wishes!