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, uma menina de dez anos nascida em Kennebunkport, ao nordeste dos Estados Unidos, faleceu na tarde da última sexta-feira depois de passar 15 dias internada em estado crítico no ''Maine Medical Center'' de Portland, segundo informaram os pais da menor.



A pequena nasceu com sirenomelia, uma má-formação que aparece em um em cada 60.000 nascimentos, que se caracteriza principalmente pela união das pernas por uma membrana, da cintura até os pés, por isso conhecida também como "síndrome da sereia". Shiloh, particularmente, carecia de cólon e órgão genitais; além disso, não foi possível separar as pernas por problemas com seu sistema circulatório, ela só tinha um ovário e deveria receber dois transplantes de rim para sobreviver.

Matthew Hand, um especialista que atendeu o caso de Shiloh, revelou que "a menina carecia de toda uma série de órgão, incluindo seu útero, sua vagina e o intestino grosso" em uma entrevista realizada em 2008, na qual também informou que "não tinha cúpula vaginal ou reto, e não havia forma de que a urina saísse do seu corpo".

Depois do seu nascimento em agosto de 1999, os médicos predisseram que ela só viveria durante poucas semanas. Entretanto, ela conseguiu viver durante pouco mais de dez anos, morrendo finalmente de pneumonia.