Our Redirected Flight

Our Redirected Flight

Wednesday, February 9, 2011

Preliminary Study Results

We received an e-mail today from the Study Coordinator at CHOP with a newly published article from the chief surgeon of the study with the preliminary results of the study.  The MOMS Trial has concluded early, after 183 (instead of the planned 200) women enrolled to allow women the choice of having prenatal surgery due to the benefits that were seen in the preliminary outcomes.  The results look very positive regarding the prenatal surgery.  I can't help but feel a little sad that we weren't in the percentage that had improved outcomes with the decreased need for a shunt, but I am still feeling very grateful to have been/be a part of this study and to have been chosen for the prenatal surgery. 

There was also an article published in the NY Times today as well as a segment on NPR if you are interested in reading/watching them.  They also did a segment on the Nightly News and will be airing a segment on the Today show tomorrow morning (Thursday).  I am just hoping that with all this press, that the impression is not given that this surgery cures Spina Bifida.  Grayden has Spina Bifida and will always have Spina Bifida.  He will still face challenges in his life that he will have to overcome.  We are hopeful that the surgery helped to maintain some function that he may not have otherwise had; however only time will tell.  Surgery or no surgery we expect him to do great things. 

I am hoping that this study is just the beginning for the research that they will continue to do on Spina Bifida.  So much more needs to be done on the prevention and treatment of this very common birth defect.  Grayden and all of the other amazing kiddos we have met with Spina Bifida will do amazing things in their lives, but I know if we parents had the choice, we would prefer that there was no such thing as Spina Bifida.  I am glad to have been part of something that will hopefully continue to change the future for these kids.  It was a huge sacrifice, not without its complications but totally worth it. 


video
I love this little laugher sooooo much!!


2 comments:

  1. You said it so well, Kelly. I never would have chosen this path for Maddie or our family, but the trial has taken us on an amazing journey, and brought so many wonderful friends into our lives, who we never would have met otherwise...and I am so graateful to have been a part of it.

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  2. Kelly & Austin - I know it was a huge sacrifice you and so many others made to give Grayden a better chance at having less complications from this disorder, and I applaud you for it! I think about the complications that could come around the corner any day as I carry twins and realize how precious life is when you're caring for little ones!

    On a side note, I couldn't help thinking watching your video of how much Gray looks like Chase when he was a baby! So cute, and so fun to watch him laughing!

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