Oakley’s cleft palate saves his life

November 25, 2024

Two-year-old Oakley has Apert Syndrome, a rare genetic condition that causes fusion of the skull, hands and feet bones.

He was also born with a large cleft palate, which saved his life when his other airways became obstructed.

Mum Talia said: “I was discharged from hospital when Oakley was two weeks old, and only home for three days when I had to phone an ambulance. His Apert Syndrome was stopping him breathing through his nose, and his tongue was falling to the back of his mouth. It was terrifying.

“The surgeon told me Oakley had used his cleft palate to breathe. He said the cleft palate had literally saved his life.”

“He had emergency surgery and a nasal stent put in to keep his airways open. The surgeon told me Oakley had used his cleft palate to breathe. He said the cleft palate had literally saved his life.

“Oakley’s well overdue a cleft palate repair but they won’t do it until his stent’s been removed because, if it stops working, he can use his cleft as an airway.”

Talia is a single mum of four, with three boys under five years old and a daughter aged 11. She’s also a highly successful social media influencer, with more than 400k Instagram followers, after starring on reality TV programme Geordie Shore.

She uses her platform to raise awareness of Apert Syndrome and cleft, and caring for a child with multiple issues.

“There’s not that many people in the public eye who speak openly about having a disabled child. At first I thought, ‘how the hell am I going to explain what’s happening when I don’t even know what’s happening myself?’

“I was in denial and shock after Oakley was born, and couldn’t speak publicly about his condition until he was six months old. His baby scans hadn’t prepared us for what was to come.

“My life is around Oakley’s medical care and appointments, and my other children. When my kids are in bed, that’s the time I’m working with brands as an influencer. I don’t have time to think.”

Oakley was a week old when his cleft palate was diagnosed, after Talia was struggling to breastfeed in hospital.

“I had no idea what a cleft palate was. When you think of cleft you think of cleft lip, not cleft palate. I’d loved breastfeeding all three of my kids and was trying to breastfeed my fourth child, but he wouldn’t latch on.

“The cleft palate nurse was amazing and explained that Oakley trying to suck milk out of me was like us trying to suck juice out of a straw with a hole in it. It totally made sense.”

“The cleft palate nurse was amazing and explained that Oakley trying to suck milk out of me was like us trying to suck juice out of a straw with a hole in it. It totally made sense.”

Talia contacted CLAPA and received our welcome pack of feeding bottles and treats. She’s since promoted Dr Brown’s and MAM cleft bottle and teat ranges in her role as social media influencer.

Although the bottles continue to help with Oakley’s liquid and blended food diet, Talia said mealtimes are “still a nightmare”.

“The food goes in Oakley’s mouth, up through his cleft, and out the nasal stent. When the stent gets blocked with food we have to suction it out. If he sneezes then the food comes out of the stent, and the stent comes out of his nose. And we’ve got 20 minutes before his oxygen levels start to drop to put the stent back in.”

Talia is in Newcastle and her family are 350 miles away in Brighton. She moved north to star in five series of Geordie Shore. She now has a much-needed care package for Oakley, with nurses providing daily help.

“It was horrific before. I was all on my own seriously struggling. I used to go into the hospital and just cry and be like, ‘I can’t do this anymore because it’s just so hard’.”

“It was horrific before. I was all on my own seriously struggling. I used to go into the hospital and just cry and be like, ‘I can’t do this anymore because it’s just so hard’. My consultant had to fight for the care package because I have a decent job. But I’m still a single mum and couldn’t stretch to round the clock care.

“His medical needs aren’t just a typical Apert Syndrome child, Oakley’s right at the higher end. He’s got so much going on bless him – feeding tubes, ventilation, oxygen when he’s poorly – and on top of that he’s been diagnosed with autism too.”

Oakley’s had 15 operations in his two short years. During his most recent hospital stay in Liverpool he was booked in for five days and one operation, but ended up contracting sepsis and having four operations.

“They didn’t think Oakley was going to make it, and I was away from my other kids for six weeks. It was awful. Oakley has very complex needs and life can feel very lonely sometimes, but I love my kids dearly. They all mean the world to me.

“There’s no cure for Apert Syndrome. And there’s going to be more surgeries, maybe more emergency surgeries because Oakley’s condition is so unpredictable. But he’s so determined and I’m so proud of him, he makes my heart burst.”