My 9 year old boy has VACTERL

Sarah - posted on 12/27/2014 ( 2 moms have responded )

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my son Quinton, is almost ten, when he was born in april 2005 doctors told me he wouldn't live long, but by God's grace he is alive and happy. He is small for his age, he has scoliosis, a short neck and shoulders, missing ribs, imperforated anus-has had a colostomy since he was born, one leg is shorter than the other and his heart is on the right. he has no tail bone so no reconstructive surgery has been done. he cannot walk long distances as he tires easily,but otherwise he likes playing a lot and riding his bike, he is very intelligent catches on quickly and does well in school. he is asthmatic. basically nothing is being done for my son, the Dr says I should just bring him in if he is unwell, I am a full time mother, had to resign from my position to look after him, we are struggling so we just go to government hospitals and have not gone for a second opinion as we cant afford it.

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Muzaffar - posted on 07/31/2016

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Hi, this is very encouraging. My daughter is now 3 years vacterl having a colostomy with coloboma as well. Its nice to read that your boy has turned to 9 and having a healthy life. Can i ask you some thing?

Kori - posted on 02/10/2015

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My son, Shaun, is also 9. He was born in December 2005. He was also diagnosed with VATER syndrome. Have you checked with the Shriner's Hospitals? The one in Chicago has been following my son since he was 1. I hope you can find some help there!

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