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'Jigsaw Kid' Lives With Jumbled Up Inter...



A girl has been nicknamed the 'Jigsaw Kid' after she survived being born with five spleens, a hole in her heart, a diseased and back to front liver, two left lungs and her stomach on the wrong side.

Bethany Jordan, six, was born with many of her organs back to front but amazed doctors who had warned her parents, Lisa, 37, and Robert, 44, there was little chance she would survive birth.

Her problems mean that, while she looks a picture of health, she cannot stand up to some of the normal rigours and strains of an average child.

Bethany, of Stourbridge, West Midlands, sufferers from Ivemark Syndrome, an extremely rare genetic disorder, characterised by a poorly-formed cardiovascular system and organs in the wrong place.

Strangely, when she exercises too much, her heart can be seen beating through her back.

There are so few sufferers that very little is known about the condition or what could be its cause.

Her mother Lisa, who is a full-time mum, said: "To look at her she just looks like a normal girl, but underneath her skin everything is back to front and jumbled up.

"When she was born the doctors said her insides were like a jigsaw.

"It has been a bit of a nightmare but she is my star and I love her the way she is - I always will."

Before Bethany was born, doctors at Birmingham's Women's Hospital discovered her jumbled-up insides following routine pregnancy scans.

Tests showed her brain was normal and Lisa chose to go ahead with the birth, despite the odds being stacked against her.

Dr Patrick McKiernan, who is Bethany's liver consultant at Birmingham Children's Hospital, said: "Essentially her organs are back to front and it's very rare to see something like this.

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

Ingrid Gladki, spokesman for the Ivemark Syndrome Association, said: "It's still a mystery as to why it occurs and I think more money needs to be put into research into it."

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  • bajaboy
  • posted by bajaboy
  • Date 5/21/2009 10:30:40 AM
  • Views: 2343
  • All Ages
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13 Comments

Current View: 15 / Show all Comments

bajaboy (Admin) : LVL 65: VP 5: said:

bajaboy

14 votes NegativePositive

170 days 23 hours ago...

Hopefully her fight for life will not end by some stupid gang shooting or other bs killing.

Gambit Xe : LVL 42: VP 5: said:

Gambit Xe

27 votes NegativePositive

170 days 22 hours ago...

Seems odd to me:
"extremely rare genetic disorder"
"more money needs to be put into research into it"
Better we deal with more prevalent problems now and deal with this later. She seems like a very sweet girl, but let`s take care of the AIDS epidemic before we deal with a rare genetic disorder

Csmack : LVL 35: VP 4.3: said:

Csmack

8 votes NegativePositive

170 days 22 hours ago...

I`m glad they gave her a chance at life and didn`t abort her. Hopefully she enjoys a long and satisfying life.

mufasa1023 : LVL 39: VP 4.7: said:

mufasa1023

20 votes NegativePositive

170 days 22 hours ago...

suddenly my asthma seems not so bad

Angry_Naked_Ant : LVL 31: VP 4: said:

Angry_Naked_Ant

16 votes NegativePositive

170 days 21 hours ago...

I`m surprised there`s an association if it`s so rare! Internet references quote a feature of the disease is having no spleen, though she had 5. That`s 4 motorcycle crashes she could endure!

mostafa.redha : LVL 40: VP 4.8: said:

mostafa.redha

Hidden (Show Comment) -16 votes

170 days 21 hours ago...

@ Gambit Xe: Yeah, spending more money on research is actually a good idea.. That way we can also deal with AIDS... You know, through research..

battle : LVL 35: VP 4.3: said:

battle

Hidden (Show Comment) -8 votes

170 days 21 hours ago...

^ what?

Neferati : LVL 41: VP 4.9: said:

Neferati

1 votes NegativePositive

170 days 21 hours ago...

^What an ignorant comment.

Megaclaw2 : LVL 2: VP 1.1: said:

Megaclaw2

0 votes NegativePositive

170 days 19 hours ago...

Now I know who to ask, when my spleen dies. Thank you!

vyrtualdogg : LVL 42: VP 5: said:

vyrtualdogg

26 votes NegativePositive

170 days 18 hours ago...

honestly I thought this was going to be about some kid that tortured people through clever and horrific games...

I hope she gets to have a long and healthy life though

Spartan0021 : LVL 49: VP 5: said:

Spartan0021

17 votes NegativePositive

170 days 18 hours ago...

Would you like to play a game? *cough*

megabyteme : LVL 33: VP 4.2: said:

megabyteme

-3 votes NegativePositive

170 days 13 hours ago...

The doctors got it wrong- her organs are not backwards, her head is just facing the wrong direction. Oh, yeah...and she needs to get rid of some of those spleens.

I don`t even know what a spleen does, but that is just too many. Perhaps she should donate the extras to someone less fortunate than her. :-P

ballbag : LVL 31: VP 4: said:

ballbag

-3 votes NegativePositive

170 days 12 hours ago...

yea.. ivemark syndrome doesn`t have loads of evidence supporting the idea that it was created in the late 70`s to weaken africa and kill gays.

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Entry Dates: 9/8/2007-9/14/2009