Shiloh Pepin, known by much of the U.S. as the "mermaid girl" after being interviewed by Oprah Winfrey on her show in September, died on October 23, 2009 at Maine Medical Center. At the time of her death, Shiloh had lived for an almost unheard of 10 years with sirenomelia, known in the vernacular as mermaid syndrome. The outwardly distinctive characteristic shared by those with sirenomelia is the fusion of what should be two legs into a single appendage resembling a mermaid's tail.
Reconstructive plastic surgery to separate the legs and construct rudimentary outward genitalia is only a small part of treatment of this disorder, which also involves the severe malformation (or even absence of) bladder, kidneys, reproductive organs, and bowels. Shiloh was one of only 3 people worldwide in known history to have survived past the first year of life without extensive reconstructive and other surgeries (such as the 2 kidney transplants she received during her brief lifetime). In fact, most infants born with this disease live only a matter of days.
Shiloh, whose parents were told she would live only a few days after her birth, said on Oprah that she didn't want to undergo the complex reconstructive surgery which would be needed to separate her legs -- an operation which is performed in multiple stages, using multiple reconstructive techniques including tissue expansion, skin grafts, and/or flap surgery. Even without the surgery, she defied the odds and outlived all expectations.
Following the Oprah episode, there were those who found Shiloh inspiring, and others who were put off by her curt answers and/or Oprah's questions. Regardless of the controversy and what anyone may have thought about the much-ballyhooed Oprah interview, I know the hearts of a nation are going out to her family in this sorrowful time.
What can we take away from Shiloh's story? Perhaps increased hope for longer and better lives for those born with serious birth defects. Perhaps increased compassion leading to better funding and staffing for charitable organizations that help provide reconstructive surgery to children with birth defects. And perhaps a different perspective on the importance of our crows' feet and other cosmetic concerns.
