SITTING in her car outside the hospital, Talia Oatway looks exhausted – her son Oakley is once again being treated, and this time the news is more terrifying than ever before.
The single mum-of-four and ex-partner of Geordie Shore star Aaron Chalmers may be drained, but as she tells The Sun all about her three-year-old’s diagnosis, she appears determined and ready to fight for his life.
Little Oakley was born with Apert syndrome, a genetic disorder that causes fusion of the skull, hands, and feet bones. At just three years old, he’s already been put under general anaesthetics 19 times, and last week, devastated Talia, 31, was told there is yet another issue he has to contend with – and this time it’s life-threatening hydrocephalus.
Last year, Oakley ended up in a coma after complications during a planned operation on his skull. While initially, Talia expected him to be in hospital for five days, she ended up uprooting her life for seven weeks to be by his side.
Oakley has been living with just half his skull since then, after surgeons deemed it too dangerous to try to replace it.
Once they finally returned home, Talia soon realised something wasn’t right, but she wasn’t prepared for just how hard everything was about to become.
You don’t understand the pressure I’m under. At home, even when he’s well, you’re still looking for signs, thinking, ‘Is something going to happen?’
Talia on being a medical mum
She explains: “Since that admission, we’ve been back and forth with hospitals and coming to A&E because he kept vomiting non-stop to the point where he was getting too dehydrated and needed a drip.
“Then he got diagnosed with something called CVS – cyclic vomiting syndrome. He gets migraines, then he starts projectile vomiting. And that was because he got meningitis last year. It triggered a neurological condition.”
Oakley was given medication, but wasn’t responding – concerned doctors rushed him in for a CT scan, where they discovered he had a condition called hydrocephalus, which is a build-up of fluid on the brain.
Talia tells The Sun: “The CT scan also showed that he had a bit of brain damage at the front of the brain from the meningitis last year.
“It also showed that his forehead they’d rebuilt was absorbing a percentage of the bone.
“So he’s actually got less bone from last year when they removed part of it because his body was absorbing part of it because of the fluid.”
Doctors have now fitted a shunt in Oakley’s brain to drain the fluid, and he is being monitored in hospital to see how his body will react.
Fighting back tears, Talia says: “There’s a lot of stress around being vigilant with Oakley’s care, acting on instinct, acting on signs that he shows.
“But Oakley’s non-verbal. So it’s not as if he can say, ‘I’ve got a headache and I’m about to be sick’, or, ‘I feel dizzy’.
“The two conditions he’s got are exactly the same symptoms. However, one of them can be life-threatening if it’s not treated when it needs to be treated.”
Talia, who has made a name for herself online as a ‘medical mum’ influencer, has taken a step back from social media as she comes to terms with the latest development.
‘I don’t like to air dirty laundry’
She first became known when she started dating Geordie Shore star Aaron in 2017.
The pair had a whirlwind romance and welcomed three children in quick succession – Romeo, five, Maddox, four, and Oakley.
Speaking about the start of their relationship, she reveals: “We always wanted a big family. This sounds really cringe, but I love being a mum.
“I love being pregnant. I loved having the babies and the routine and the whole mum thing. I absolutely loved that. And I still love it.”
During her pregnancy with Oakley, doctors flagged that there could be an issue – she had two MRIs but was discharged from foetal medicine and was told everything was fine.
She says: “So when Oakley was born, obviously it was a shock.”
Asked when the true extent of his issues dawned on her, Talia says: “I don’t think it truly hit me until Oakley was about three months old when he was bouncing in and out of hospital.”
The pressure became too much, and Aaron made the decision that the relationship was over.
Asked about their split, she says: “I think the pressures of what comes with being a medical family, your priorities change. And the pressures that come with it are a lot. Speaking with other medical families, it takes a very, very strong couple to survive a relationship.
Symptoms of hydrocephalus
HYDROCEPHALUS is a condition where there is too much cerebrospinal fluid in the brain.
This can cause brain damage or death if left untreated.
According to the Mayo Clinic, symptoms can include:
- Headaches
- Vision problems
- Eye movements that are unusual
- Enlargement of the head
- Sleepiness or sluggishness
- Nausea or vomiting
- Trouble with balance
- Poor coordination
- Poor appetite
- Loss of bladder control or urinating often
Hydrocephalus can be caused by a number of factors, including brain defects, infections, injuries, and tumours.
It can be treated, with most common treatments being a shunt or an endoscopic third ventriculostomy.
“Trauma, as in what your child goes through, the constant hospital stays, all of that sort of stuff… that’s just the way it went.”
Since their split, Aaron has hit out at Talia on a number of occasions, but she has mostly kept a dignified silence.
Last week, though, things reached boiling point, with the struggling mum admitting: “I do solo parent two of my children. Oakley’s here every single night, he has been for over a year, and the fact that this person can just go online and start talking about his medical care when he doesn’t attend any appointments, doesn’t attend hospital, is mind-blowing.”
But having time to calm down, she adds: “I don’t like to air dirty laundry. I think my kids will grow up, and once things are on the internet, they will stay on the internet, and I’ve always been mindful of that.”
‘I got dealt these cards’
Asked how she is coping with it all, Talia explains: “I’ve had no option but to just put my big girl pants on and learn for my son.
“I got dealt these cards and I’ve got to deal with it and make sure my son’s always being cared for, always safe.
“I’m his advocate because he doesn’t speak. I say all the time, you don’t understand the pressure I’m under. At home, even when he’s well, you’re still looking for signs, thinking, ‘Is something going to happen?’, you’re waiting for the next thing.”
Oakley sleeps with the help of ventilation at home and uses oxygen when he’s unwell – he has a tube in his nose, which is seven centimetres long, to keep his airway open. Talia explains: “If that tube comes out, you’ve got to straightaway put that back in because that’s his breathing support.”
Talia is full of praise for the NHS, as well as Oakley’s lead respiratory consultant, who she describes as “amazing”.
She’s also seeing a psychologist once a week to help her process what is going on.
Talia won’t let herself think about a worst-case scenario.
Looking to the future, the mum is cautious and tells me: “I just want things to calm down for him. Have some time at home without hospital admissions, and enjoy being a child.
What is Apert syndrome?
APERT syndrome, also known as acrocephalosyndactyly, is a rare disorder that is named after the doctor who first discovered it in the early 20th century.
It is a genetic condition and is caused by a mutation of the FGFR2 gene.
This affects how cells in the body – namely bone cells – grow, divide, and die.
Children born with Apert syndrome have a characteristic appearance, which is caused by the bones in the skull and face fusing and not growing in proportion, according to Great Ormond Street Hospital.
It can increase a child’s risk of hydrocephalus, which results in pressure building on the brain, and it can also cause Chiari malformation, where the base of the brain is squeezed.
Other complications include breathing difficulties and heart problems, which require lifelong monitoring.
The condition is said to occur in one in every 65,000 to 88,000 births and a child’s outlook can vary greatly depending on the severity of symptoms.
“I feel like he’s not really had that time to have that, because it has been quite a lot of hospital admissions – whether that’s an operation, a CT scan, lumbar drains, he’s had a lot of things done to him.”
In the meantime, Talia is enjoying the special little moments with her boy – and despite him being non-verbal, he has developed his own form of communication.
She says: “Affection is not very much at the moment because he’s also got a global developmental delay as well. But like I can say, ‘OK, can I have a kiss? Can I have a kiss?’
“Because he wears hearing aids, too, he still can hear a little bit. And he will give me a kiss, or I say, I’ll cuddle, and then I’ll pick him up, and he knows.
“It makes me appreciate things a lot more when he does do it, because it isn’t often.”
As the interview comes to an end, Talia heads back inside the hospital, and it’s clear that behind the social media persona is an incredibly strong, brave and caring woman doing it all on her own.