Series 1 Episode 14 - The Little MermaidFirst aired: 10/9/2008
The 45min documentary series exploring remarkable stories of human experience continues. This instalment features a girl born with a rare and debilitating defect which gives her a mermaidlike appearance. As she prepares to undergo surgery to have her legs separated, the girl’s parents agonise over their decision to allow the risky procedure to go ahead.
Shiloh Pepin suffers from sirenomelia or ‘mermaid syndrome’, a rare condition that means her legs have been fused together since birth. In most cases, a sirenomelia sufferer dies at birth or soon after, but Shiloh has defeated the odds in making it to her eighth birthday. It has not been an easy journey for her and her parents, Leslie and Elmer. As Shiloh was born with only one kidney and no lower colon, bladder, uterus or genitals, she has already endured years of medical treatment in her short life.
Shiloh’s mother, Leslie, describes her daughter as “an amazing young lady – bubbly and funny”. In fact, she puts Shiloh’s long life down to her fighting spirit. Shiloh loves dancing, and even attends classes. Her doctor since birth, nephrologist Matt Hand, says, “We’ve had to ask other doctors to help her and they always say no. And we always know that all they’ll have to do is meet her, and they’re not going to turn her down.” Two years ago, Shiloh’s kidney function shut down completely and she was put on dialysis.
Eventually, the harrowing treatment could not be administered as doctors could no longer find a suitable place to attach the machine onto her small body. The last resort was a kidney transplant, but it was a short-term solution because Shiloh’s body quickly outgrew the new organ. When the second kidney also failed, Shiloh was forced to go back on dialysis once again.
In August 2007, Dr Hand performed a second kidney transplant. The operation was particularly crucial, because the kidney needed to be accepted by Shiloh’s body in order for her to be healthy enough to have separation surgery. The two other mermaid syndrome sufferers in the world have both had the operation, but doctors had greater concerns about Shiloh’s case because her body was already so imbalanced.
As Dr Hand waited to see whether Shiloh was fit for surgery, Shiloh’s parents were at an impasse. While Leslie was eager for her daughter to have the surgery and live a normal life, Elmer was not sure there was a need. The house-husband wondered whether his daughter’s fused limbs were really a disability. Would more quality time with their daughter reap greater rewards than a potentially life-threatening operation?
Shiloh Pepin suffers from sirenomelia or ‘mermaid syndrome’, a rare condition that means her legs have been fused together since birth. In most cases, a sirenomelia sufferer dies at birth or soon after, but Shiloh has defeated the odds in making it to her eighth birthday. It has not been an easy journey for her and her parents, Leslie and Elmer. As Shiloh was born with only one kidney and no lower colon, bladder, uterus or genitals, she has already endured years of medical treatment in her short life.
Shiloh’s mother, Leslie, describes her daughter as “an amazing young lady – bubbly and funny”. In fact, she puts Shiloh’s long life down to her fighting spirit. Shiloh loves dancing, and even attends classes. Her doctor since birth, nephrologist Matt Hand, says, “We’ve had to ask other doctors to help her and they always say no. And we always know that all they’ll have to do is meet her, and they’re not going to turn her down.” Two years ago, Shiloh’s kidney function shut down completely and she was put on dialysis.
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Eventually, the harrowing treatment could not be administered as doctors could no longer find a suitable place to attach the machine onto her small body. The last resort was a kidney transplant, but it was a short-term solution because Shiloh’s body quickly outgrew the new organ. When the second kidney also failed, Shiloh was forced to go back on dialysis once again.In August 2007, Dr Hand performed a second kidney transplant. The operation was particularly crucial, because the kidney needed to be accepted by Shiloh’s body in order for her to be healthy enough to have separation surgery. The two other mermaid syndrome sufferers in the world have both had the operation, but doctors had greater concerns about Shiloh’s case because her body was already so imbalanced.
As Dr Hand waited to see whether Shiloh was fit for surgery, Shiloh’s parents were at an impasse. While Leslie was eager for her daughter to have the surgery and live a normal life, Elmer was not sure there was a need. The house-husband wondered whether his daughter’s fused limbs were really a disability. Would more quality time with their daughter reap greater rewards than a potentially life-threatening operation?NOTE:
Shiloh Pepin is only one of three surviving sirenomelia (mermaid syndrome) patients who do not have the usual kidney and bladder complications. One of them is Milagros Cerrón Arauco of Peru born in 2004. Although most of Milagros’ internal organs, including her heart and lungs, are in perfect condition, she was born with serious internal defects, including a deformed left kidney and a very small right one located very low in her body. In addition, her digestive, urinary tracts and genitals share a single tube. The other one is Tiffany Yorks of the United States, born in 1988, who underwent successful surgery in order to separate her legs. She is the longest surviving sirenomelia patient to date.
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