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Posted 2010-10-12 10:15 PM (#40033)
Subject: veptr

New User

Posts: 3

i'm kinda confused about what the doctor told us about our son he said he need veptr because he has fused ribs and spine problems but the child has no pain no synptoms at all
he said he had what looked like jarcho levin but the looks perfectly normal and everything i have read shows different so how can he have this on xray but have no pain and have no deformities i dont understand any help would be great
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Posted 2010-10-12 11:03 PM (#40035 - in reply to #40033)
Subject: RE: veptr


Posts: 3243
Location: Utah

Hi Chris and welcome!

Pain and deformity are NOT common with our VEPTR kids.  The design and goal of the VEPTR is to prevent future problems with breathing and/or spine alignment.  If a child has a smaller than normal rib cage now, it will not get better on its own, which means by adulthood, the lungs have not grown properly and the outcome is typically an early death due to lung disease (this was the case when patients went untreated).  If you look in the photo albums section of this website, you will see that most children have no outward physical deformities, but inside, their spines and/or ribcages are not formed correctly.  VEPTR helps support the body from the inside.  It can not "fix" what nature didn't provide in the first place, but it can offer support to the body structure so the child's quality of life can be sustained or improved.

Since you have so many questions that are specific to your son's condition, I suggest making another appointment with the orthopedic surgeon specifically to answer your questions.  Have them explain the diagnosis and tell you exactly how it is affecting his body now, and in the future.  You need to understand what the implications are if you choose to have surgery -vs- choosing no surgical intervention.  I understand - completely - how difficult it is to hand over your child for this MAJOR surgery when they are still playing, learning, growing and having no outward problems.  But, 9+ years later, I can tell you I would do it all over, in a heartbeat, because of the quality of life my son has been given.  Braydon's surgeon always says, "the decision is harder than the incision".  So very true!  The decisions parents must make are gut-wrenching.  But, hopefully parents understand the long term benefits this procedure can offer to the kids who need it.  It is not for everyone.  But for those who do need this, it is a huge blessing.  Good luck with your decision.  I hope you can get answers that will help you be at peace.

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