INDIANAPOLIS — A two-year-old Indianapolis girl is beating the odds, after being born with a condition that strikes one in one hundred thousand children in this country.
Harper Gray has sirenomelia, also known as mermaid syndrome. Her legs were fused when she was born.
Her journey did not start with an immediate separation of her legs. That would come almost a year after she was born. The more pressing issues were the placement of an ostomy for waste and repairing damage to her esophagus when a tube had to be inserted while she was in the hospital.
She spent weeks in the NICU but made it home and has grown. Last year, Dr. Gregory Borschel, the chief of plastic surgery at Riley Children’s Hospital, determined the time had come to do the leg separation.
“We had to make sure she had a blood supply to both her legs and then, if the legs were separated, would that blood supply be enough to keep those little legs alive,” said Dr. Borschel. “We also had to know what was going on with the nerve supply.”
The surgery was successful and within a few weeks, Harper started physical therapy. It was a painful time, but an important time to stretch her muscles and tendons and begin the slow process of standing and walking.
Fast forward to the past few days and Harper Gray is a picture of health and has started taking a few steps on her own. She’s not totally escaped other health issues. Her dad, Austin, told CBS4 that in late fall of 2022, her kidney began to shut down.
“This past November her kidney suffered a lot,” said Austin. “It took a hit, so we are now on dialysis, that we are able to implement from home.”
But the happy news for Austin and his wife, Brittany, came while they were at work. Luckily, the moment was caught on video that they have shared with CBS4: Harper took her first steps on her own.
“We still have a physical therapist come once a week,” said Brittany. “She’s been doing amazing things. She’s getting really strong. She took her first steps in February. That was just a dream that we had. She’s taken some small steps around the house on her own.”
There are more surgeries ahead for Harper. She will eventually get a new kidney when she is a little bigger. She is blessed with the blood type AB positive, which means she has a wide range of donors available when the time comes.
The family is also blessed with relatives who live nearby. Harper’s growing strength is another miracle to celebrate.
“Stay stong,” said Brittany. “No matter what, for her, and find joy in every day. There’s so much to be grateful for.”