Alumnus on 20/20 after saving 'mermaid' baby

Geneseo alumnus Dr. Matthew Hand made national news when he was featured on ABC's 20/20 for his work with the rare disease sirenomelia, also known as "Mermaid Syndrome."

The Feb. 22 episode of the primetime newsmagazine chronicled the lives of two girls afflicted with this condition. Mermaid syndrome, a condition in which the victim's legs become fused together, is characterized by severely underdeveloped or nonexistent internal organs. The girls are two of only three known survivors in the world.

Hand is the doctor for the younger of the two patients, an eight-year-old named Shiloh Pepin. In her short life, Shiloh has already undergone more than 150 operations, largely to restore her missing organs. Hand has been her doctor throughout most of this process.

Among other problems, Shiloh was missing her uterus, bladder, large intestine and rectum when she was born. Despite these enormous setbacks, however, the 20/20 story characterized her as a happy and loving child: a portrayal Hand called a good representation of his patient.

Hand is originally from Irondequoit and graduated from Geneseo in 1985 with a biology degree. He has been working at the Maine Medical Center as a pediatric nephrologist (kidney specialist) since 1996. It was in this position that he met Shiloh and her family.

"The first time I saw Shiloh she was about three weeks old," he said. "I just thought she was such a beautiful baby. Very striking."

Surgeons initially told the Pepins that their young daughter would die soon after birth. When she survived the first few weeks of life, her unsure parents brought her to Hand.

"We talked about their goals that day," Hand recalled. "The family wanted Shiloh to be at home as much as possible, to live as long as she could, and to die surrounded by people who care about her. We started from there."

An article on the 20/20 Web site quoted her father as saying, "Matt was the first physician who looked at Shiloh and saw a little girl who needed help, instead of a medical case that was uncertain."

He pointed out that many doctors would have let Shiloh die: the protocol for babies born with Mermaid syndrome. Instead, he and his team worked with her family and have been able to give her eight years of life thus far.

A documentary about Shiloh's remarkable story is in the works for this spring.