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Thread: Worried parents re:congenital vertebral anomalies

  1. #1
    Join Date
    Sep 2005
    Posts
    3

    Worried parents re:congenital vertebral anomalies

    Hello,

    My name is Adele. I was searching the net trying to get some information to better understand our daughter's diagnosis. I came across this site, read some stories and hope to find people who understand and can help us through this ordeal.
    Our daughter is 12 months old and was just diagnosed with congenital vertebral anomalies with thoracic and rib involvement causing secondary scoliosis. We are waiting to see some specialists. Does anybody have any info. regarding this type of scoliosis? What lies ahead in our daughter's future and how do we help her?

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome Adele!

    I noticed you also signed up for a yahoo group (CongenitalScoliosisSupport). I hope you find lots of information and experiences to help you know you are NOT alone.

    My son, Braydon, is now 10yrs old. He was born with congenital scoliosis (multiple hemivertebrae with contralateral failure of segmentation) and rib anomalies and other things. Today he is a very active 5th grade boy who loves to do 10yr old things. He loves to ride his bike, play in the dirt, rollerblade (yikes!) and so many more things. He has no physical restrictions (except for no contact sports and no trampoline) and does not wear a brace. I'd be happy to share our experiences with you. It is a long road, but one you don't have to walk alone.

    My best!
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    Sep 2005
    Posts
    3
    Thanks Carmell. I am so glad to have found these groups. Reading your story and visiting your web site, has really given us a lot of encouragement that our baby girl will be ok. This waiting for the specialist appointment is very hard. As until then we do not know what the best options are for our child. Or what kind of road lies ahead of us. Until then, we'll keep reading and learning.

    Adele

  4. #4
    Join Date
    Sep 2005
    Posts
    3
    Has anyone heard of Dr. CHARLES H.RIVARD frim Montreal? My cousin from Italy works at a spine clinic, and doctor' s who work with her highly recommend him.

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