Baby born with ear on his cheek as part rare syndrome that only affects one in 25,000 people
A baby boy was born with his right ear on his cheek as a result of a rare syndrome that only affects one in 25,000 people.
Vinnie James, now four-months-old, has been diagnosed with Goldenhar Syndrome — an extremely rare condition that can cause abnormal development of the eyes, ears and spine.
Alongside his misplaced ear Vinnie was also born without a right eye and breathing difficulties.
His parents Grace, 25, and Rhys James, 26, from Bridgend, Wales, had a normal pregnancy and only learnt of their son’s condition when medics rushed him to intensive care shortly after he was born.
Mr James, a business owner, recalled the worry and then shock after Vinnie was born on November 9 last year.
‘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 toilet and started praying,’ he said.
‘I then noticed a small ear on his right cheek, I didn’t know what had happened — I was really shocked in the moment.’
Mr James said: ‘We didn’t know what it was, we were really shocked and had no preparation for it. We sat there, confused and tired.’
Vinnie James, four-months-old, has Goldenhar syndrome — an extremely rare condition that can cause abnormal development of the eyes, ears and spine
His parents Grace, 25, (pictured right) and Rhys James, 26, from Bridgend, Wales, had a smooth pregnancy and were only made aware of their son’s condition after he was born and rushed to intensive care (pictured with Vinnie’s sister)
Medics eventually diagnosed him with Goldenhar syndrome a rare and still not fully understood birth defect.
Vinnie had to stay in hospital for 65 days and during his stay medics had to rush him into surgery after he stopped breathing.
Mr James recalled how at just a month-and-a-half-old Vinnie had to have a tracheostomy, a procedure where medics cut a whole into the windpipe and insert a tube to help a patient breath.
Despite making progress, Vinnie’s tracheostomy still has to be suctioned multiple times a day, and he is more prone to illnesses and infection.
He has suffered from two chest infections since being discharged from hospital.
Vinnie is now under the care of Great Ormond Street Hospital in London and has begun the process to get a prosthetic eye fitted.
He will also need a surgery to relocate his ear in the coming years.
His parents must currently travel from Bridgend to London every two weeks for his eye appointments — and say the cost of travel and living expenses has become overbearing.
At two months old he was diagnosed with Goldenhar syndrome after he stopped breathing. He has since undergone a surgery to have a tracheostomy fitted and is looking to have a prosthetic eye fitted
His parents now must travel from Bridgend to Great Ormond Street Hospital, London every two weeks for his eye appointments
A GoFundMe page was set up to help support the family with these expenses and has raised £4,900 so far, which Mr James said is a ‘blessing’.
Mr James 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.’
Goldenhar Syndrome is not a singular condition but an umbrella term for a wide range of bone abnormalities affecting the face and sometimes the vertebrae in the neck and back.
Common reported signs include missing or misshapen ears, the mouth being larger on one side, vertebrae fusing or missing, and eyes being missing.
Some babies, as in Vinnie’s case, also have breathing difficulties and need surgery shortly after being born.
Studies estimate Goldenhar Syndrome affects around 1 in 25,000 babies born. It’s not genetic and doctors do not yet know why it happens.
Ms James is now a full-time carer for their son, having formerly been a receptionist.
Despite all the challenges Vinnie’s parents have stayed positive.
He added: ‘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.
‘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.’
