When I found our baby would be born with Spina Bifida we got a call from the Spina Bifida Clinic at Primary Children's Medical Center (so thankful this is around and so close). We met with the Nurse Practitioner at the clinic a few times before Emylie was born to discuss some of the things we could expect.
* basic understanding of S.B.
* because of the level of the opening in Emylie's back (usually the lower the better) she would likely have limited mobility with her legs and possible bowel and bladder issues.
* Shunt - 90% of kids with S.B. need shunts to help drain the extra fluid out of the ventricles in the brain. So we were informed of the signs to indicate whether or not she would need one.
* it was also mentioned in one of the meetings that there was a very rare chance that there could be more complications. These complications were so rare that they had to mention them but then told us not to think anymore about them because they were so rare. I went home and tried to remember some of them and Dave reminded me that they told us not to even think any more about them, so not to worry. (At 4-5 weeks old we were told Emylie had these rare complications)
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