Little Vinnie James has had a tough start to life, but his parents are determined to give him the best possible future. The four-month-old was born with Goldenhar syndrome, an extremely rare condition that affects his face, heart, and breathing. Born with only one eye, a small jaw, and an extra ear on his cheek, Vinnie’s condition was immediately clear when he arrived into the world last November.
His dad, Rhys James, 26, and mum Grace, 25, were left shocked when their newborn son wasn’t breathing at birth. He was quickly rushed to intensive care at Glangwili Hospital in Carmarthen, where doctors suspected he had the rare syndrome—something that only occurs in 1 in 25,000 to 45,000 births.
Rhys recalled the terrifying moment, saying: “When Grace gave birth, he wasn’t breathing, so they rushed him over to a table. 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 didn’t know what had happened—I was really shocked in the moment.”
After being ventilated for an hour, Vinnie was moved to Heath Hospital in Cardiff, where he stayed for 61 days. At just two months old, he had to undergo life-saving surgery for a tracheostomy after he suddenly stopped breathing. The procedure involved inserting a tube into his windpipe to help him breathe, and it has since become a crucial part of his daily life.
Since then, his parents have undergone intensive training on how to care for his tracheostomy, including learning how to pass a nasogastric feeding tube. But the challenges aren’t over—Vinnie still requires frequent suctioning of his tracheostomy throughout the day and is at a much higher risk of infections. Since coming home, he has already suffered two chest infections.
Now under the care of Great Ormond Street Hospital, Vinnie requires fortnightly trips from Bridgend to London, a 322-mile round journey that has put an emotional and financial strain on his family.
To ensure Vinnie gets the medical care he needs, his mum Grace, who worked as a receptionist, has quit her job to become his full-time carer. Meanwhile, Rhys, who runs his own business, has had to cut back on work, meaning the family is struggling financially.
They have since launched a fundraising appeal to help with travel costs, which Rhys says is essential for them to keep going. “When I have a day off, I don’t get paid, so the money is the most amazing thing for us in this situation,” he explained. “We wouldn’t be able to do it without the help—we’d be in a lot of debt.”
Despite everything, the couple are choosing to stay positive. “We’re still new to this, but we’ve learned to adapt. We want to use this experience to spread awareness for those who suffer from disabilities,” Rhys added.
Vinnie’s journey is far from over—he has already started the process of getting a prosthetic eye fitted and will eventually need surgery to relocate his extra ear. But his parents are determined to fight for their little boy every step of the way.
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