A baby was born with a rare condition that caused him to be born with his right ear on his cheek and no right eye, a condition that “shocked” his parents after what they said was a normal pregnancy.
When Vinnie James was born to Grace and Rhys James four months ago, he “wasn’t breathing,” his father, 26, says, according to The Daily Mail.
“They rushed him over to a table, and I didn’t know what to do [so] I went into the toilet and started praying,’ James said. When he looked at his son, “I noticed a small ear on his right cheek. I didn’t know what had happened — I was really shocked in the moment.”
James said his son was rushed into surgery immediately following his birth; Vinnie subsequently spent 65 days in the hospital for medical interventions from what was later diagnosed as Goldenhar syndrome.
It’s a rare condition that’s defined by abnormal development of the eye, ear and spine, the Children’s Hospital of Philadelphia says. It generally only impacts one side of the body — in Vinnie’s case, his right side — but may also affect the heart, kidney, lungs and nervous system.
The Cleveland Clinic estimates that it affects between 1 in 3,500 and 1 in 25,000 births.
“We didn’t know what it was, we were really shocked and had no preparation for it. We sat there, confused and tired,” James says — sharing that it was the beginning of a long medical journey for his son.
At just a month and a half, Vinnie had to have a tracheostomy — a surgically created hole in the front of his neck — to help him breathe, but struggles with frequent chest infections.
As a GoFundMe that’s been established to help support the family explains, Vinnie will need to undergo “numerous medical procedures, including receiving a prosthetic eye, which will require annual adjustments as he grows.”
There are also plans for surgery to relocate his ear.
“We’re still new to this, but we’ve learned to adapt to the situation and use it as a positive to spread awareness for those who suffer from disabilities,” James says. Vinnie’s mother, Grace, 25, has left her receptionist job to care for Vinnie full-time.
“We want to push people to contact us, if they feel like they’re struggling,” James said. “We’d love to speak to people and tell them how we got through this journey and give them advice.”
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