We found out today that our trips have varrying degrees of fused skulls. Our NICU doctor said they will consult with a neurosurgeon group and then get back to us. He says nothing will be done until the kids come home from the NICU (9 days old today) and they visit the neurosurgeon. The kids look fine but they had a catscan so we know the issue is there. Anyone been through this? If so, can you give me some kind of idea what to expect?

Thanks,

Its called Craniosynostosis. We thought two of our kids had it. One had an ENORMOUS soft spot and odd shaped head, the other had a fused soft spot and perfectly round head. There are lots of varying degrees of it.

Ours turned out to be considered normal, but in the very outskirts of normal. It is very rare. I work with a girl who had it, and one of her three children had it. Her daughter's surgery was at 10 months, an incision that is a large zig zag from ear to ear. She had drainage tubes for a few weeks. No helmet though. There are a lot of support group web pages, I think they don't recommend the surgery until 6 months, but before 10 months, if I remember correctly.

Good luck. The cat scan was the scariest part for us because of the outrageous amount of radiation. I'm still so concerned they are going to have cancer or something as a result, but I know it was a test that needed to be done to rule this out, or in your case, maybe rule it in, so you can get the proper surgery. The show, The Doctors did an episode on it six weeks ago too, you could check that show's webpage.

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