If six-year-old Bethany Jordan plays outside too vigorously, her heart will start pounding—through her back.
Jordan suffers from Ivemark Syndrome, an extremely rare genetic disorder. What it means is that, if you flip around the textbook picture of the inside of a human body, you’d have her body. She has five small spleens, a backwards liver that will require a transplant, and a poorly-formed cardiovascular system, including a hole in her heart, which is located behind her lungs rather than in the front of her chest. Her stomach is also on her right side, rather than her left. In fact, her anatomy, is so unusual that people now call her the “Jigsaw Kid.”
The misplaced organs didn’t come as a complete surprise to Jordan’s parents, Lisa and Robert. When doctors at Birmingham’s Women’s Hospital were performing routine pregnancy scans, they thought the unborn child was missing a spleen and might have Down’s Syndrome. After further tests, they found that the baby’s brain was normal—but that was about the only thing that was.
Jordan had to spend her first 10 days in the world in an incubator. And after being home for a month, she was rushed back to the hospital for life-saving surgeries on her liver, lung, and heart. Doctors doubted Jordan would survive birth, but now it looks like she’s expected to live—just as long as she gets that liver transplant.
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Image: flickr/ retrolaama
May 27th, 2009 at 8:47 am
[...] Bethany Jordan has an extremely rare genetic disorder called Ivemark Syndrome that is characterized by misplaced or mis-oriented organs, a poorly-formed cardiovascular system and an absent (asplenia) or multiple number of (polysplenia) spleens. Doctors diagnosed her condition through routine pregnancy scans and thought she would never survive birth. But her brain function was normal and her mother carried her to term. Since then, Bethany has survived life-saving surgeries on her liver, lungs and heart, but she’s still waiting for a liver transplant. [...]
August 5th, 2009 at 2:47 pm
[...] Related Content: Discoblog: Child With Rare Disorder Has Backward Organs, Heart In Her Back [...]