JuliaRyan.com. Powered by Blogger.

Social Media

Craniosynostosis

August 23, 2010

Okay, so BabyGirl was officially diagnosed with non-syndromatic sagittal craniosynostosis with scaphocephaly. (I think I burned at least 50 calories just remembering and typing all that). She'll have her first corrective surgery in October at MUSC Children's Hospital.
Dr. Glazier, the pediatric neurosurgeon we saw on Friday, and his surgical partner, a plastic surgeon at Wake Forrest, learned the technique from a surgeon in Sweden who invented it and they pioneered all the trials and research involved to get it approved in America.
It's not a common procedure.
They've only performed this particular surgery 15o times in the past 10 years.
Thankfully it's not nearly as invasive as the original technique which involved multiple blood transfusions and a lengthy stay in the ICU. They'll make an S shape incision down the the entire length of her skull and remove the fused sutures (the bone that grew together that shouldn't have) and place several metal springs to force the skull to remain open. This allows her brain sufficient room to force the skull back into a proper position allowing it room to expand. She'll return four to six months later for another surgery to remove the springs. She'll need to wear a protective helmet in the car or if she's around older children or pets or scenarios where she might be jostled. The good news is that she'll have both of the surgeries before her first Birthday and she'll never remember a thing.
Her team has had a 100% success rate with no recurrences or follow up surgeries needed.
We feel so blessed to have so many friends and family praying for our sweet baby. We are confidant that she is in God's loving hands and he's placed her in the physical hands of a highly skilled surgeon.
I've nicknamed him McSteadyHands.
In my opinion that's better than McDreamy or McSteamy combined.

Pin ThisShare on Tumblr

4 comments:

  1. Such good news to know this can be resolved through surgery -I am thrilled you are happy with the surgeons. Babygirl will be in good hands at MUSC and I am sure her parents will give her lots of TLC. Praying for you!

    ReplyDelete
  2. Everything sounds very encouraging about the surgery. Babygirl is definitely in good hands at MUSC but in the even more fabulous hands of our Father. We will keep y'all in our thoughts and prayers.

    ReplyDelete
  3. Y'all are all in our thoughts and prayers! She's sure is a lucky gal to have such great family, friends, and doctors supporting her through all of this!

    ReplyDelete
  4. Terri iguinaAugust 25, 2010

    My favorite part was the success rate part.....ooohhh....type it again 100% success rate. Yeah. I like that.

    I've dropped my facebook, but still check your blog. Hooked me.

    ReplyDelete

Thanks for joining the conversation!

 

Julia Ryan© Theme by Blog Milk