A baby was diagnosed with a rare syndrome after being born with an ear on the right side of his cheek.
Vinnie James, a four-month-old, has Goldenhar syndrome – an extremely rare condition characterized by the abnormal development of the eye, ear, and spine.
His parents, Grace, 25, and Rhys James, 26, noticed a small ear on their newborn son’s cheek after he was born, and he was rushed to the ICU.
At two months old, little Vinnie – who was also born without a right eye – was diagnosed and has since undergone surgery to have a tracheostomy fitted when he stopped breathing.
Vinnie has started the process to have a prosthetic eye fitted and will need surgery to relocate his ear in the coming years.
Rhys, a business owner from Bridgend, Wales, said: “When Grace gave birth, he wasn’t breathing, so they rushed him over to a table, and I didn’t know what to do – I went into the bathroom and started praying.
“I then noticed a small ear on his right cheek; I didn’t know what had happened – I was really shocked in the moment.”
Grace had a smooth pregnancy and had been unaware of Vinnie’s condition before he was born.
Vinnie was born on November 9, 2024, but was immediately rushed to the intensive care unit at Glangwili Hospital in Carmarthen when he wasn’t breathing.
He was put on a ventilator for an hour after he was born, and doctors told his parents they suspected he might have Goldenhar syndrome.
Rhys said: “We didn’t know what it was – we were really shocked and had no preparation for it. We sat there, confused and tired.”
They stayed in Glangwili Hospital for four days before being moved to Heath Hospital in Cardiff, where Vinnie stayed for 61 days.
After an initial discharge meeting, Vinnie’s doctors conducted a sleep study, but when he stopped breathing, he was rushed into surgery.
Rhys said: “He was a month and a half old when they had to give him a tracheostomy.
“After surgery, he was on a ventilator, but doctors started to realize his lungs were too strong, and he was breathing against the machine, so he was off the ventilator within a week.
“It was really amazing – we knew he was progressing.”
After the surgery, Grace and Rhys spent time completing training on tracheostomy care, including how to pass a nasogastric tube – a tube that goes through the nose into the stomach – to feed Vinnie.
Despite his progress, Vinnie’s tracheostomy still has to be suctioned multiple times a day, and he is more prone to illnesses and infections.
He has suffered from two chest infections since being discharged from the hospital.
Vinnie is now under the care of Great Ormond Street Hospital and has begun the process to get a prosthetic eye fitted. He will also need surgery to relocate his ear in the coming years.
Vinnie’s parents now must travel from Bridgend to Great Ormond Street Hospital in London every two weeks for his eye appointments – with the cost of travel and living expenses becoming overbearing.
A GoFundMe page was set up to help support Vinnie’s parents with these expenses – and has raised £4,900 so far.
Rhys said: “It’s the biggest blessing we’ve ever received.”
Vinnie’s mom, Grace, is now a full-time caregiver for their son, having formerly been a receptionist.
Rhys added: “When I have a day off, I don’t get paid, so the money is the most amazing thing for us in this situation.
“We wouldn’t be able to do it without the money – I’d be in a lot of debt.”
With thousands raised, the family’s worries about the financial aspects of Vinnie’s care can be less of a burden – but there are still countless procedures and surgeries in Vinnie’s future.
Rhys added: “I can’t even put into words how much this will help.
“We say the soul is more important than facial features, but for his quality of life, it will matter to him.”
Despite all the challenges, parents Rhys and Grace have stayed positive.
Rhys said: “We’re still new to this, but we’ve learned to adapt to the situation and use it as a way to spread awareness for those who suffer from disabilities.
“We want to encourage 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.
“Hopefully, Vinnie can inspire a lot of people.”
Support Vinnie and his family here – https://www.gofundme.com/f/n2g4y5-supporting-little-vinnie-on-his-medical-journey
