Last week some friends of ours were featured on the news here locally. They found out their baby girl would have Spina Bifida in a very similar way we did, and they elected to have fetal surgery. They are a very sweet couple and their darling little girl just turned 1. We were lucky to meet them while they were still deciding whether to have the surgery, and now see them at different SB events. It's neat to see a family we know be featured, and also to see that fetal surgery will soon be offered here in Minnesota.
There are a couple parts to the news story, though, that I have a hard time with. Where it says: "tests revealed the damage on baby's spine was higher than originally thought and could cause brain damage after birth." This was the same diagnosis that we got, and while it sounds scary, this is why she has a shunt. What they should have said was it could cause brain damage after birth... if left untreated! Anyone who spends more than 15 seconds with Leah knows she doesn't have brain damage.
The other thing they said, "A gap in the spinal cord is typically repaired after a baby is born and is followed by a childhood filled with physical therapy." No playing? No friends? Hours and hours of PT. Wow, that sounds pretty awful. Something no kid, or parent would want, right? Not so fast! Leah has been in PT, most kids with SB get some kind of PT on a regular basis, but it's fun! At least Leah's was fun, she was learning through playing and we did additional activities here at home. The only burden on us was making the time to do it.
I get that things need to be sensationalized for the sake of viewership, but it doesn't tell the whole truth. Spina Bifida isn't a terrible, horrible diagnosis. There is still a lot of joy and happiness. Life is slower, maybe, but not worse. That's where I get defensive about SB, when others portray it as a worse-off situation. It's also hard to see this surgery being touted as a life-changing surgery and giving kids better outcomes. It may be life-changing but it's not life-saving, and that's why we didn't do it. Should we have? Would it have made a difference? It's hard not to look back sometimes and wonder.
Either way, fetal surgery or not, kids with Spina Bifida DO have additional physical challenges, but it doesn't mean that their childhood can or shouldn't be any different than "regular" kids. And fetal surgery or not, Leah's life is just as filled with happiness as anyone else's.
Enjoy meeting our friends and fellow SB family!
http://kstp.com/news/stories/S3749222.shtml
So, SO true!! It's hard to get people to understand that our girls are just the same as theirs when news stories portray their lives as filled with hardship. We also chose not to have fetal surgery. I understand why families make the choice to do it, but I don't like that it is sometimes touted as a life-saving measure. Our sassy little girls are doing just fine! :)
ReplyDeleteThanks so much for sharing!