Spina bifida is on the lips of many newscasters across the US and Canada. I was excited and taped one of the news reports (and accidentally slept through the other - oops). Reporting on the results of the MOMS research study done in the United States.
It is also all over our blogging world as well. Many of the moms I follow participated in the MOMS study.
The result of the MOMS study is complete and published. This is a study that was done in the States. It compares doing surgery to repair the back either before or after the baby was born. Prenatal versus postnatal surgery.
I did look into the surgery when I was pregnant with Nickolas. This was a research study, where parents who were eligible were randomly assigned to the prenatal or postnatal surgery group. The prenatal surgery group had surgery at (I think 24-26 weeks), while the baby was in the uterus! It really blows my mind.
Closing the back in a teeny, tiny 24 week fetus. Then closing mom back up and continuing with the pregnancy.
It is actually during this surgery that this photo came from.
The other group is the postnatal group. These moms (who were randomly assigned) had the initial testing for the group and then returned at 38 weeks for a scheduled c-section - just like Nickolas.
So I went into watching these news articles knowing the study was completed early (apparently ignoring the fact that it ran twice as long as anticipated). AND that it was declared a complete success and now fetal surgery is being offered separate from the trial.
Amazing. But at the same time a little saddening.
Saddening because all of this news, all of this excitement about the surgery, isn't going to help Nickolas. Isn't going to help any of the kids that are born. But I think that is just me being a little self-absorbed. This is GREAT for future parents who get a diagnosis. I wonder what it will do to doctors who recommend termination for a fetus that could have surgery?
That being said, this surgery IS NOT A CURE. It is never meant to be a cure. It was meant to see the impact on the various complications from spina bifida. Specifically hydrocephalus, and chiari malformation.
Then why does many of the news reports discuss how spina bifida causes walking difficulties, brain damage and mental disability.
Wait a sec. Back that up!
So this is how the post surgical group is portrayed? Can't walk, brain damaged and having mental problems. What is this horrible thing called spina bifida?
I think that this kind of portrayal is negative, perhaps we don't want spina bifida in the news - at least not like this.
I suppose (gruginly) that chiari and hydrocephalus could be considered brain damage - but that is certainly not how I see it.
The Canadian News was much more gentle. CTV news reported: