Shiloh Pepin was born with sirenomelia, a rare condition known as “mermaid syndrome” that caused her legs to be fused together. Doctors warned that the condition was almost always fatal in newborns, but Shiloh defied expectations and lived to be 10. Her condition also severely affected her organs: she was missing her uterus, bladder and large intestine, among other organs.
At age 2, she received a kidney transplant, and over the following eight years she underwent more than 150 surgeries and long periods of dialysis. Shiloh became one of the few known people to have survived so long with this disease, while her story was followed by her family and the “20/20” program.
Shiloh died at age 10 in a hospital in Maine from pneumonia. Although she ultimately could not overcome the complications of her condition, for a decade she defied a diagnosis that seemed to leave her with little chance of survival. Her parents, who had known the risks even before her birth, chose to stand by her and do everything possible so she could live surrounded by her family.
