Shiloh Pepin was born with a rare congenital defect known as sirenomelia, or “Mermaid Syndrome.” This defect happens when a person is born with the legs fused together, and usually with some stunted or absent internal organs, including the large intestine and reproductive organs. Most people born with this condition undergo surgery to separate their legs and reconstruct organs when they are under a year old. However, Shiloh did not experience such a procedure. Despite this, she lived until the age of 10. Though that”s a pretty short life, it”s far beyond the life expectancy of someone with sirenomelia who has not received surgery.
Shiloh was born in 1999 in Maine, and, due to her condition, was only expected to live a few months. However, she survived kidney failure, dialysis, and two kidney transplants, and grew to be a bright, even precocious young girl with a good sense of humor. She attended school and maintained a bright outlook despite her challenges.
Shiloh was one of only three recorded cases of people with sirenomelia to survive infancy without an operation. A TLC documentary, Extraordinary People: Mermaid Girl, was made about her, and followed Shiloh and her family through their day-to-day lives. She gained something of a following, and appeared on The Oprah Winfrey Show in 2009.
Sadly, Shiloh passed away in 2009 at the age of 10, battling a case of pneumonia, only about a month after her appearance on Oprah. TLC dedicated another documentary in her memory, which captures not only her challenges, but also the joy she found in life and the acceptance and even celebration she found in being herself. “I don”t really want to change who I am,” she says in one of the documentaries. “Just because I”m different doesn”t mean I”m not the same.”
Below, you can see a trailer for one of several documentaries made about Shiloh. There are longer ones available on YouTube as well, covering both her life and her untimely passing. You can see them here and here.