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vater syndrome Jump to page : 1 Now viewing page 1 [25 messages per page] | View previous thread :: View next thread |
VEPTR Sites/Hospitals -> United states | Message format |
savannahsmama28 |
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New User Posts: 3 | hi everyone im new to this site my name is heather and i have a 2yr old daughter named Savannah she was born with vater syndrome she has severe congenital scoliosis and the doctor is doing surgery on jan 5th to put in the veptr i was just wondering if anyone else on here has a child with vater or vactural syndrome | ||
Carmell |
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Expert Posts: 3243 Location: Utah | Hi Heather - Welcome! There are quite a few VACTERL kids on this list. My Braydon is one of them. He is now 14yrs old. His spine malformations have been his biggest medical hurdle. He had VEPTR rods placed when he was 6yrs old, and has done very well since. He's an active teenager who lives life to the fullest. He just returned from a 2.5 week road trip (from Utah) to Texas with Mike (hubby). He went fishing and did lots of work (concrete work, laying sod, etc.). He loves to golf, ride his bike, go hiking, etc. His birth defects have not slowed him down at all. VACTERL Association was one of the first conditions the VEPTR devices were designed for. A well-seasoned VEPTR surgeon knows about VACTERL issues and these kids. Where will Savannah be having her VEPTR surgery? We'd love to have details. Hopefully all will go well and she'll be on her way to a full recovery and an active childhood. | ||
Maggie's Mom |
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Elite Veteran Posts: 833 Location: Chittenden County Vermont | Hi Heather, My Maggie who is 7 has VACTERL association too. She had her VEPTR placed when she was 3 at Boston Children's Hospital. Hope you find the support you need here. Susanne | ||
Wendy |
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Extreme Veteran Posts: 599 Location: Southern California | my Alex is also a VACTERL VEPTR kid who is doing well! | ||
savannahsmama28 |
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New User Posts: 3 | thank you very much! she is having her surgery at hershey medical center in pa | ||
Emily's Mom |
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Expert Posts: 1582 Location: Greenbush, Minnesota | Hi Heather ~ My daughter doesn't have Vater Syndrome but does have the VEPTR devices. Welcome to the board!! | ||
Zoes Nana |
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Expert Posts: 3970 Location: Plymouth, Pennsylvania | HI HEATHER, AND WELCOME TO THE VEPTR BOARD... ZOE ALSO IS A "VATER KIDDO"... SHE IS NOW 11, AND A GREAT, ENTHUSIASTIC "TWEENER"... SHE JUST HAD HER 30-SOMETHING SURGERY IN BOSTON FOR A VEPTR EXPANSION, BUT WE STARTED HER CARE FOR HER FIRST 2 YEARS AT "HERSHEY".... WHO IS THE SURGEON WHO WILL BE DOING YOUR DAUGHTERS "VEPTRS"... WE ARE IN NE PENNSYLVANIA...WILKES-BARRE AREA... GOD BLESS... | ||
kkim74 |
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Member Posts: 5 | im sorry but is this the same savanna from shriners hospital in erie. my son reily met a savannah at shriners years ago. if so, how's it going? reily's mom kristina | ||
buggabear4494 |
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Regular Posts: 91 Location: florida | My son Logan is a VATER baby and is going to be having the VEPTR surgery as soon as the Dr gets the hospital to approve the program! im a little (ALOT) NERVOUS | ||
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