It’s natural for parents-to-be to envision how their children might look. In the early 2000s, before the advanced AI images we know today, there were entire websites dedicated to compositing the faces of two people to determine how their child might look. As many of us think about which features our children will inherit, we don’t usually consider genetic mutations and syndromes that could occur within the womb.
That’s why when Grace and Rhys James of Bridgend, Wales, welcomed their son into the world, they were shocked to find him missing an eye and with an ear growing on the side of his cheek.
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Before the Jameses could contemplate their son’s physical differences, they had to wonder whether he was going to survive. When Vinnie was born, on November 9, 2024, he wasn’t breathing, the Daily Mail reports. Doctors rushed him, over to a table. “I didn’t know what to do,” Rhys recalled. “I went into the toilet and started praying.”
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Eventually, Rhys got a good look at his son. “’I then noticed a small ear on his right cheek. I didn’t know what had happened — I was really shocked in the moment,” Rhys said. “We didn’t know what it was, we were really shocked and had no preparation for it,” he continued. “We sat there, confused and tired.”
Eventually, doctors came back with some answers. They diagnosed Vinnie with Goldenhar syndrome, a rare birth defect the medical community is still attempting to understand. The syndrome causes abnormal development of the eyes, ears, and spine. In addition to his misplaced ear, Vinnie was born without a right eye and with breathing difficulties.
Vinnie remained in the hospital for 65 days after his birth. During that time, medics had to rush him into surgery when he stopped breathing. A month and a half into his life, doctors installed a trach tube so he can breathe. The area of the incision has to be suctioned multiple times a day. He is also prone to infections and has had two chest infections since he was discharged from the hospital.
Grace, who previously worked as a receptionist, is now a full-time caregiver to Vinnie, who is the couple’s second child. The next step in Vinnie’s medical journey is a fitting for his prosthetic eye. In the coming years, doctors will also perform surgery to relocate his ear. For now, the family travels from Bridgend to London every two weeks for Vinnie’s eye appointments.
As you might imagine, all of this is expensive. As such, a friend set up a GoFundMe for the family. So far, the fundraiser has gathered more than the equivalent $13,000 in donations, 97% of the initial goal. Rhys says the donations are a blessing. “I can’t even put into words how much this will help,” he said. “We say the soul is more important than facial features, but for his quality of life, it will matter to him.”
In this new journey with their son, the Jameses are learning and hope to use their story to educate.
“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.”
