Maine girl with 'mermaid syndrome' dies at 10
Shiloh Pepin, who defied the odds and survived a decade past infancy, inspired people around the world.
By DAVID HENCH and TREVOR MAXWELL, Staff Writers
PORTLAND — Shiloh Pepin, a 10-year-old girl from Kennebunkport who had a very rare condition often called "mermaid syndrome," died Friday afternoon at Maine Medical Center.
Shiloh had been hospitalized in critical condition since last week. She died at 1:35 p.m. in the hospital's special care unit.
Since her birth, Shiloh had defied the odds.
Doctors told her parents that she would likely survive for only hours, maybe days. As she grew into a smart, funny and headstrong girl, Shiloh inspired people around the world with her positive attitude and resilience. Her story was featured recently on "The Oprah Winfrey Show" and other national television programs.
"I wish I had better news," said hospital spokesman John Lamb.
He was unable to provide details about the medical circumstances that led to Shiloh's death. Lamb said Shiloh's parents, Leslie and Elmer Pepin, requested privacy for the family on Friday.
Shiloh was one of only a few children to survive past infancy with sirenomelia, known as mermaid syndrome. Her legs were fused at birth into a single appendage, with feet at the bottom. Only two other people in the world are known to be living with mermaid syndrome.
Shiloh was born without several of her organs and received two kidney transplants. Her second kidney transplant was done at Maine Medical Center when she was 8.
Some children who have survived with sirenomelia have had surgery to separate their legs, but Shiloh's circulatory system made that challenging because blood vessels crossing from side to side would have been severed.
Maureen King, chair of the board for Regional School Unit 21, said Shiloh's death will have a ripple effect on the entire district, especially at the Kennebunkport Consolidated School, where Shiloh was a fifth-grader.
"She was such a shining personality in that building," King said Friday night. Counselors will be available next week to talk to students.
"She really was such a wonderful person. She was friends with just about everybody. My sympathies go to her parents," King said.
Nearly 1,400 people are signed up as fans on Shiloh's Facebook page. Her last post on the page came on Oct. 7. Shiloh reminded people to tune in to "Mermaid Girl: The Next Chapter," a show about her that aired on the TLC network on Oct. 11.
Through the television shows, news articles, Facebook and other Web sites, Shiloh inspired people who otherwise would not have heard her story.
"I live in Iowa. I have cerebral palsy. I love your video," 12-year-old Lydia Dawley wrote to Shiloh on Facebook. "You have a great personality I wish you lived close so we could be friends and hang out. You opened my eyes because you are so brave."
Staff Writer Trevor Maxwell can be contacted at 791-6451 or at: tmaxwell@pressherald.com
Copyright 2009 by The Portland Press Herald/Maine Sunday Telegram. All rights reserved.
Shiloh Pepin, una niña de diez años que nació en Kennebunkport, al noreste de Estados Unidos, falleció en la tarde del pasado viernes tras 15 días en estado crítico en el ''Maine Medical Center'' de Portland, según dieron a conocer los padres de la menor.



La pequeña nació con sirenomelia, una malformación que aparece en uno de cada 60.000 nacimientos, que se caracteriza principalmente por la fusión de ambas piernas en una sola desde la cintura, por lo que también se la conoce como "síndrome de la sirena". Shiloh, en particular, carecía de colon y órganos genitales; además, no fue posible separar ambas piernas por problemas con su sistema circulatorio, sólo tenía un ovario y debió recibir dos trasplantes de riñón para sobrevivir.

Matthew Hand, un especialista que atendió a Shiloh, reveló que "la niña carecía de toda una serie de órganos, incluido su útero, su vejiga y el intestino grueso" en una entrevista realizada en 2008, en la que también informó que "no tenía bóveda vaginal o recto, y no había forma de que la orina saliera de su cuerpo".

Tras el nacimiento en agosto de 1999, los médicos pronosticaron que sólo viviría durante unas pocas semanas, sin embargo, logró vivir durante poco más de diez años, muriendo finalmente de neumonía.