Baby boy is born with back-to-front legs and NO bum – and is one of just 5 sufferers in the UK
Tracy Fletcher, 39, gave birth to baby Baron last month after he was diagnosed with caudal regression syndrome (CRS), a condition so rare that there are thought to be only five sufferers living in the UK.
The condition means that Baron has been born with clubbed feet, no buttocks and has no control over the lower half of his body.
Tracy was advised to have an abortion at 20 weeks, with her and her partner Edward faced with the prospect of bringing up a child who would be unable to walk.
Tracy, a care assistant from Cheltenham, said: “We want to give Baron the best quality of life as we possibly can.
“Despite everything he’s been through and what he has to face on a daily basis, he’s turning into the most wonderful little boy.
“We don't want him brought up any differently to any other baby.
"After the 20-week scan we immediately started wondering what quality of life he would have and if he’d have a chance of life at all.
“The doctor said he’d be severely handicapped, would never walk and would have kidney problems, bladder and bowel problems.
“But in the end, we decided to continue and to bring our child into the world.”
Tracy had a caesarian section four weeks before her due date and after she came round, she says that "the full reality hit home of what we had to face".
He looked a lot worse than we thought, his legs were almost parallel with his shoulders.
“It was a very difficult moment and the first time I held him it was quite scary.
"A nurse said that in all of her 25 years she'd never come across a baby with the condition."
Immediately after being born, the baby was induced into a coma and placed on a ventilator because his lungs were filling with fluid.
But after three weeks in hospital, he was finally able to return home with Tracy.
Despite his difficult start in life, she says that he's developing into a unique little baby.
racy said: “It was amazing to come home with him.
"While he was intensive care I was with him every single day and he just looked so alone and helpless.
“We can’t dress him properly because of the position of his legs and he can’t kick them.
“He has no feeling in his legs or across the lower part of his body but has recently started to move in some areas.
“He’s making so much progress each and every day but we’re unsure what quality of life he’ll have. In spite of everything he’s happy all the time.”
Tracy added Baron will face a challenging future – but she wants to give him the best possible life.
She said: “He’ll definitely be in a wheelchair.
“We’ve accepted that if he’s disabled we’ll help as much we can.
"We want to give him the best possible life, he’s loved by everyone.
"He’s got a lovely, heartwarming smile.”
Tracy has now set up a GoFundMe page in a bid to crowdfund enough cash for a specially adapted car seat for Baron. You can help here.
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