A baby boy born with his right ear on his cheek has captured hearts worldwide after being diagnosed with an extremely rare condition affecting just 1 in 25,000 people.
Vinnie James, now four months old, has Goldenhar Syndrome, a rare congenital disorder that disrupts the development of the eyes, ears, and spine. In addition to his misplaced ear, Vinnie was born without a right eye and suffered breathing difficulties immediately after birth.
His parents, Grace (25) and Rhys James (26) from Bridgend, Wales, had no idea of their son’s condition throughout pregnancy. It wasn’t until Vinnie was rushed to intensive care at birth that doctors discovered his complex medical needs.
“We Had No Idea Until He Was Born”
Recalling the terrifying moment, Rhys said:
“When Grace gave birth, he wasn’t breathing. They rushed him over to a table, and I didn’t know what to do. I went into the toilet and started praying.”
“Then I noticed a small ear on his right cheek. I was really shocked—I didn’t know what had happened.”
Doctors later confirmed that Goldenhar Syndrome was behind Vinnie’s condition, but the exact cause of the disorder remains unknown.
65 Days in Hospital and Life-Saving Surgery
Vinnie spent 65 days in hospital, where he underwent emergency surgery after he suddenly stopped breathing. At just six weeks old, he had a tracheostomy, a procedure where a hole is made in the windpipe to insert a tube for breathing.
Though he has since been discharged, his breathing must be monitored 24/7, and his tracheostomy needs constant suctioning to prevent complications. He has already battled two chest infections, which pose a serious risk to his fragile health.
The Road to Recovery: Eye Prosthetics & Surgery
Now under the care of Great Ormond Street Hospital in London, Vinnie has begun the process of getting a prosthetic eye and will require ear relocation surgery in the future.
His parents travel from Bridgend to London every two weeks for his appointments, but the cost of travel and expenses has become overwhelming.
A GoFundMe campaign set up to support the family has raised £4,900 so far, which Rhys described as a “blessing” in their difficult journey.
“We always say the soul is more important than facial features, but for his quality of life, this will matter to him.”
What is Goldenhar Syndrome?
Goldenhar Syndrome is a non-genetic condition that affects around 1 in 25,000 births. Doctors still do not fully understand what causes it, but it results in facial and organ abnormalities.
Despite the challenges, Vinnie’s parents remain positive, focusing on giving their son the best possible future.
Want to support Vinnie’s journey? You can donate to his GoFundMe page to help cover his medical expenses. ❤️