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Miracle Jigsaw Girl Continues To Improve

 

Updated : May 22, 2009

On the outside, Bethany Jordan looks like any healthy little girl but on the inside, she has been pieced together differently from everyone else.

Dubbed the 'Jigsaw Kid', Bethany was born with five spleens, a hole in the heart, a diseased and back-to-front liver, a right lung formed as if it was a left one, and her stomach on the wrong side.

Despite all these problems the girl, who was not expected to survive birth has continually defied the odds and has grown up to be a remarkably healthy six year old.


Bethany, of Stourbridge, West Midlands, suffers from Ivemark Syndrome, a very rare disorder characterised by a poorly-formed cardiovascular system and having organs in the wrong place.

There are so few sufferers - one in 150,000 - and each case is so different, that very little is known about the condition. The cause is thought to be genetic.

Doctors at Birmingham's Women's Hospital discovered Bethany's condition before she was born during routine pregnancy scans.

They were not able to find a spleen and warned her parents she could also be suffering from Down's Syndrome.

Doctors also thought Bethany could be brain-damaged, leaving her family with the agonising decision of whether to terminate the pregnancy. Later tests showed her brain was normal and Mrs Jordan chose to go ahead with the birth.

Bethany was born at nearby Wordsley Hospital, weighing 4lb 15oz. She spent ten days in an incubator before being allowed home.

A month later she was taken back to hospital after her heart failed and in the ensuing months had operations on her liver, a collapsed lung and on the hole in her heart, before rejoining her parents at home.

Dr Patrick McKiernan, Bethany's liver consultant at Birmingham Children's Hospital, said: 'No two children who have this condition would be alike, but treatment for Bethany's syndrome is getting better and better.

'We only need to see her twice a year now, which is great news for her and her family. She will eventually-need a liver transplant but at the moment we are just waiting to see when that will be.

'She is doing very well despite all of her problems, I think she's a very tough little girl.'

Ivemark Syndrome sufferers are slightly smaller than other children their age because of the calories they burn off by their hearts having to work harder.

VeryHappyPig says that story would even melt scrooges heart and bring a tear to wolverines eye!

 

 

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