In 1999, Shiloh Pepin was born in Kennebunkport, Maine, with one of the rarest deformities known to mankind — sirenomelia, or “Mermaid Syndrome.” The condition caused her legs to be fused, resulting in what looked like a mermaid tail. Doctors told her parents she would only survive for about 10 days.
“She was missing a whole series of organs including her uterus and her bladder, and her large intestine,” Dr. Matthew Hand, a kidney specialist at the Barbara Bush Children’s Hospital at the Maine Medical Center, who treated Shiloh, told “20/20” in 2008. “She had no vaginal vault or rectum, and no way for urine to get out of her body. Most of these babies die because of poor renal tissue makeup in their body.”
However, the tough little girl proved she was a fighter by defying the medical odds. While people with the rare condition survive by having their legs surgically separated, Shiloh wasn’t able to undergo the procedure, as the blood vessels in her circulatory system would have been severed. Still, she lived for a decade. And despite her condition, Shiloh was known in school as the girl with the “shining personality.”
“All the kids love her,” said Samantha Mitchell, Shiloh’s friend. “She’s like their role model, basically.”
In October 2009, Shiloh passed away at the age of 10 after a bout of pneumonia. She was one of only three people in the world known to have survived this condition for any length of time. Before her death, her story was featured on “The Oprah Winfrey Show” and in a TLC documentary, inspiring thousands of people around the world with her bright personality and positive outlook on life.
In the short documentary below, you can get a glimpse into her everyday life with her parents. Rest in peace, Shiloh.