The Little Mermaid

The 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?

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