A baby was diagnosed with a rare condition after being born with a small ear on the right side of his cheek — a discovery that left his parents stunned and began an unexpected medical journey.

Vinnie James, now four months old, has Goldenhar syndrome, an extremely rare condition that can affect the development of the eyes, ears and spine.

His parents, Grace, 25, and Rhys James, 26, first noticed the tiny ear on their newborn son’s cheek after he arrived needing immediate medical attention.

Rhys, a business owner from Bridgend, Wales, said: “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.

“I then noticed a small ear on his right cheek. I didn’t know what had happened — I was really shocked in that moment.”

Vinnie was also born without a right eye and received his Goldenhar syndrome diagnosis when he was two months old.

Since then, he has undergone surgery to have a tracheostomy fitted. This involves creating a small opening at the front of the neck and inserting a tube to help him breathe.

The tube allows air to travel directly to the lungs, bypassing the nose and mouth.

Vinnie has also started the process of being fitted with a prosthetic eye and will need surgery to reposition his ear in the coming years.

Grace had experienced a smooth pregnancy and had no idea about Vinnie’s condition before his arrival.

Vinnie was born on November 9, 2024, but was immediately taken to the intensive care unit at Glangwili Hospital in Carmarthen after experiencing breathing difficulties.

He received breathing support for an hour after birth, and doctors told his parents they suspected he might have Goldenhar syndrome.

Rhys recalled: “We didn’t know what it was. We were really shocked and had no preparation for it. We sat there, confused and tired.”

The couple spent four days at Glangwili Hospital before being transferred to Heath Hospital in Cardiff, where Vinnie remained for 61 days.

Following an initial discharge meeting, doctors arranged a sleep study. However, when Vinnie experienced breathing difficulties during the assessment, he was taken for 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 realise his lungs were too strong and he was breathing against the machine. Within a week, he was off the ventilator.

“It was really amazing. We knew he was making progress.”

After the operation, Grace and Rhys spent time learning how to care for Vinnie’s tracheostomy, including how to pass a nasogastric tube — which travels through the nose into the stomach — to feed him.

Despite his progress, Vinnie’s tracheostomy still needs to be suctioned several times a day, and he remains more vulnerable to illnesses and infections.

He has experienced two chest infections since leaving hospital.

Vinnie is now under the care of Great Ormond Street Hospital and has begun the process of being fitted with a prosthetic eye.

He will also need surgery to reposition his ear in the coming years.

His parents must now travel from Bridgend to Great Ormond Street Hospital in London every two weeks for eye appointments, with travel and living expenses becoming increasingly difficult to manage.

A GoFundMe page was created to help the family cover these costs and has raised £4,900 so far.

Rhys said: “It’s the biggest blessing we’ve ever received.”

Vinnie’s mum, Grace, has now become a full-time carer for her son, having previously worked as a receptionist.

Rhys explained: “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 manage without the support. Otherwise, I’d be in a lot of debt.”

He added: “I can’t even put into words how much this will help.

“We always say the soul is more important than facial features, but for his quality of life, these changes will matter to him.”

Despite the challenges, Rhys and Grace have remained hopeful and determined to give their son the best possible future.

Rhys said: “We’re still new to this, but we’ve learned to adapt to the situation and use it as a positive opportunity to raise awareness for people living with disabilities.

“We want to encourage people to reach out if they’re struggling. We’d love to speak to others, share how we’ve navigated this journey and offer advice.

“Hopefully, Vinnie can inspire a lot of people.”