Thursday, February 10, 2011

SB News

Spina bifida has been in the news a lot today. The MOMS study released a an article in "The New England Journal of Medicine" that concludes that fetal surgery is better for a fetus with spina bifida. We knew this was just around the corner as we heard about it the week after Christmas. Here are some of the stories if you want to check them out.

This has really thrown me today...probably partly because we just came out of the hospital. Since CeCe was in the post-natal group, all the wonderful things they are talking about don't apply to her. Which brings me to today. I have spoken with her neurosurgeon in Philly and he believes that her stridor IS related to her Chiari and that she will need the decompression surgery. She needs an MRI to really know what's going on. Of course, I've already called her neuro here and am waiting for them to call me back. The MRI will give them a much better picture of what's going on....I wished I had called Philly sooner as he believes the larnygo malacia was related too and maybe we could have spared her that surgery.

Brian and I are moving through as best we can and we will be considering what we need to do as a fmaily as we go forward.

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