A baby was born with a rare condition that left him with his right ear on his cheek and no right eye, which “shocked” his parents after what they thought was a normal pregnancy.
Vinnie James, born four months ago to Grace and Rhys James, “was not breathing,” according to his father, 26, according to The Daily Mail.
“They rushed him over to a table, and I did not know what to do, so I went into the toilet and began praying,” James explained. “When I looked at my son, I noticed a small ear on his right cheek.” I had no idea what had happened; I was completely stunned in the moment.”
James stated that his son was rushed into surgery immediately after birth; Vinnie then spent 65 days in the hospital for medical interventions related to what was later diagnosed as Goldenhar syndrome.
The Children’s Hospital of Philadelphia describes it as a rare condition characterized by abnormal development of the eye, ear, and spine. It usually only affects one side of the body—in Vinnie’s case, the right side—but it can also affect the heart, kidney, lungs, and nervous system.
The Cleveland Clinic estimates that it affects between one in 3,500 and one in 25,000 births.
“We had no idea what it was; we were completely shocked and unprepared. We sat there, confused and tired,” James recalls, adding that it was the start of a long medical journey for his son.
Vinnie needed a tracheostomy — a surgically created hole in the front of his neck — to help him breathe when he was only a month and a half old, but he still suffers from chest infections frequently.
According to a GoFundMe page set up to help the family, 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 reposition his ear.
“We are still new to this, but we have learned to adapt to the situation and use it as a positive to spread awareness for those who suffer from disabilities,” according to James. Vinnie’s mother, Grace, 25, has quit her receptionist job to care for him full-time.
“We want to push people to contact us, if they feel like they are struggling,” James informed us. “We would love to speak to people and tell them how we got through this journey and give them advice.”
