CARMEL, Ind. — Harper Gray looks like any other baby. But her life has been anything but that.
Born in May of 2021, Harper was diagnosed with Sirenomelia also known as Mermaid Syndrome. Her legs were fused together.
Her parents, Brittany and Austin Gray of Carmel, found out about their daughter’s abnormality through an ultrasound examination. They also learned through more examinations that Harper had just one tiny kidney and no way to rid waste from her body.
When she was born on May 8, Harper immediately underwent surgery for a colostomy and was placed in the neonatal intensive care unit at Riley Hospital.
“She was in the NICU for 33 days. Over that whole time orthopedic doctors and urologists were brought in, a long list,” said Austin Gray, Harper’s father.
“Our biggest question was, when can the legs be separated? That was our number one question.”
Harper had no problem breathing and her brain development was normal. She had one more stay in the NICU when she suffered a small tear in her esophagus. By last winter and spring, as she stabilized, it became clear doctors could plan to separate her legs.
Dr. Gregory Borschel, the Chief of Plastic Surgery at Riley Hospital, took the case and realized immediately Harper’s case was unique.
“We had to make sure she had a blood supply to both legs and then, if the legs were separated, would that blood supply be enough,” said Dr. Borschel. “We got some special images to really look at the blood flow.”
In the meantime, Dr. Borschel consulted with surgeons in Canada and Italy. It was agreed the best surgical treatment was to make a series of zig-zag incisions using flaps. Dr. Borschel also made sure the nerves to Harper’s legs were in good working order.
“One of the goals for Harper is to get her walking,” said Dr. Borschel. “If we do get her walking, we have to maintain the mobility on the knees and we want to avoid contractures around the knees.”
The procedure to separate Harper’s legs was performed in April of 2022. It took seven hours and a thousand stitches were placed in her newly separated legs.
“I feel very happy with the outcome so far,” said Dr. Borschel. “She’s not totally done yet. She has club feet, we’ll get that treated too.”
Harper is home now with her parents and with the help of both a physical and occupational therapist is making great strides. The future looks very bright, with the expectation she’ll be walking on her own someday soon.
“We just want to give her the best life possible,” said Brittany, Harper’s mother. “I want more than anything for her to feel like a normal young woman. I just love her.”
It’s estimated that only one in every 100,000 babies born has Mermaid Syndrome. Many do not survive. The Grays are aware of one other patient who lives in Texas.
The exact cause of Sirenomelia is unknown and most cases occur randomly for no apparent reason.