Today Ca was sitting on my (E) lap and looking at a video of
herself playing with I, and commented on the bald spot on the back of her head.
I scooched her hair aside and gave it a kiss. And realized that her life might
be a little simpler if we took some time and gave a general explanation to all
of you.
Ca was born with a meningocele. This means, as best as we
can understand, that a portion of the sheath that protects her spinal cord (not
any of the nerves themselves) had bulged outside of her spine during her growth
in utero. It is a sub-type of spina bifida. It is our understanding that a child with that congenital condition
born in the US would have surgery within their first week of life to correct
it. Ca had surgery when she was 16 months old, and remarkably, doesn't seem any
worse for the wear. We don't really understand the "head" location of
the surgical site rather than a "neck" or "back" location,
but are pretty sure that this will not be a mystery to the doctors. At Friday's
pediatrician intake appointment (with a fabulous international adoption
specialist!), we learned that she is absolutely on track from a
height/weight/developmental milestone perspective. She doesn't appear to have
any of the nerve damage that might have been a risk with her condition. We know
that she is missing a small part of her skull (from the meningocele? from the
surgery? who knows?), and will be making specialist appointments to learn more
about her current condition, possible surgical interventions, and any
precautions she should be taking. For the time being, we are treating her as
normally as possible, and staying away from activities that put her sweet
noggin at risk.
Update: after visiting the pediatric neurosurgeon, here is our new understanding:
ReplyDeleteCarissa's condition is technically known as an encephalecele, since the sheath that bulged protects her brain, rather than her spinal cord. It's not really related to spina bifida. It was likely caused by incomplete/improper development of her skull bones in utero, and without the protection, the sheath bulged and filled with cerebra-spinal fluid. With retained fluid at an abnormality like that, there is initially a risk for hydrocephalus, but Carissa's drains just fine. She doesn't need surgery at all, although covering the bald spot with hair-growing scalp is absolutely an option in the future.