It’s normal for expectant parents to imagine what their children might look like. There were whole websites devoted to compositing two people’s faces in order to predict how their child could appear in the early 2000s, before the sophisticated AI images of today. Genetic abnormalities and diseases that could develop in the pregnancy are often overlooked when many of us ponder the traits our children will inherit.
Upon the birth of their baby, Grace and Rhys James of Bridgend, Wales, were taken aback to see that he had an ear growing on the side of his cheek and was missing an eye.
The Jameses had to worry about their son’s survival before they could consider his physical abnormalities. According to the Daily Mail, Vinnie wasn’t breathing when he was born on November 9, 2024. Physicians hurried him to a table. Rhys recalls, “I was at a loss for what to do.” “I entered the restroom and began to pray.”
Rhys finally had a clear view of his son. Then I saw that his right cheek had a tiny ear. I was genuinely stunned at the time and didn’t know what had happened,” Rhys remarked. He went on, “We were really shocked and had no preparation for it, so we didn’t know what it was.” “Being exhausted and bewildered, we sat there.”
Doctors eventually returned with some answers. Goldenhar syndrome, a rare birth abnormality that the medical world is still trying to comprehend, was the diagnosis they made for Vinnie. The syndrome results in aberrant spine, ear, and eye development. Apart from having a misaligned ear, Vinnie was born with breathing issues and without a right eye.
After his birth, Vinnie spent sixty-five days in the hospital. When he stopped breathing during that time, medical personnel had to take him to surgery right away. In order for him to breathe, doctors put in a trach tube a month and a half into his existence. It is necessary to suction the incision site many times a day. In addition to being prone to infections, he has experienced two chest infections since leaving the hospital.
Vinnie, the couple’s second kid, is being cared for full-time by Grace, who used to work as a receptionist. A fitting for Vinnie’s prosthetic eye is the next stage of his medical adventure. Doctors will also operate to move his ear in the upcoming years. For Vinnie’s eye appointments, the family currently makes the two-weekly journey from Bridgend to London.
All of this is costly, as you may guess. A buddy created a GoFundMe for the family as a result. The fundraiser has raised 97% of its initial goal, or more than the equivalent of $13,000, so far. According to Rhys, the donations are a boon. “The amount of help this will provide is beyond words,” he remarked. “We say that the soul is more important than the face, but it will matter to him in terms of his quality of life.”
The Jameses are learning from this new adventure with their kid and intend to use their story to educate others.
“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,” Rhys said. “We want to push people to contact us, if they feel like they’re struggling — we’d love to speak to people and tell them how we got through this journey and give them advice.”
