The parents of a three-year-old born with a deformed skull have revealed how their daughter’s ‘squashed’ face was initally dismissed by medical staff at birth.
Jenna, 31, and Matthew Carlin, 35, of Stockton-on-Tees, appeared on Lorraine to share their story, revealing how they were told hospital staff assumed baby Ava’s unusual appearance was simply because she’d been ‘in the womb for nine months’.
In fact, Ava was born with craniosynostosis, a rare condition that caused her skull to become deformed in the womb.
With doctors warning it could affect how her brain developed, the youngster was forced to undergo surgery at just 18 months old to rebuild her skull from the bottom of her forehead to the back of her head.
Ava Carlin, three, appeared on Lorraine this morning as her parents shared how the toddler faced major surgery before her second birthday after being born with craniosynostosis, a rare condition that caused her skull to become deformed in the womb
Ava pictured before the gruelling nine-hour operation she had at 18-months old; from birth her parents, Jenna and Matthew, from Stockton-on-Tees, had harboured concerns about their daughter’s ‘squashed’ face but were reassured by health professionals that she was normal
The family appeared on the daytime show to share their story and reveal just how far Ava, now three, has come since undergoing surgery (pictured from left: Mum Jenna, Ava, brother Luca, dad Matthew)
Jenna and Matthew told Christine Bleakley, standing in for Lorraine Kelly, that they thought Ava’s face was a ‘bit wonky’ because she’d spent nine months in the womb
After the Ava couldn’t move her neck six weeks after birth, the couple were referred to a peadiatrician, who finally diagnosed craniosynostosis, telling Jenna and Matthew their daughter faced a nine-hour operation to prevent damage to her ongoing brain development
Ava’s mum Jenna Carlin explained how the couple’s fears were realised when doctors confirmed that Ava would need the major surgery
During the nine-and-a-half hour operation, surgeons broke Ava’s skull into pieces, before reconstructing the pieces into a ‘new head’.
Parents Jenna and Matthew told Christine Bleakley, standing in for Lorraine Kelly, that although they were immediately concerned about Ava’s appearance, their fears were allayed by hospital staff.
Jenna said: ‘We did speak to the health professionals when she was first born. Her face was a bit wonky and we couldn’t put our finger on it what was actually wrong with her. And they just kept reassuring us, saying she’s been squashed in your womb for nine months.
‘They told us: “She’ll even out, she’ll be absolutely fine.”‘
Despite doctors’ reassurances, Ava was unable to move her neck at six weeks old.
She added: ‘The weeks went on and our concerns grew more and more and then eventually she went to physio for a condition called torticollis [a wry neck].
‘We spoke to the physio and said “We’re concerned, her face isn’t symmetrical. It’s just very minor but it’s something that we can see and we don’t think is right.’
The couple finally wed in April this year after putting off walking down the aisle until their daughter was recovered enough to be a flower girl on their big day (Pictured: the family in the Lorraine studios this morning)
Transformation: Ava as she is now. Her family say it took two years for the swelling to go down but now it’s hard to tell she’d ever been affected by the condition
Ava Carlin (pictured left recently) had her skull rebuilt after a rare condition caused it to become deformed in the womb. At just 18 months old, the youngster went under the knife to have her skull broken and reconstructed. She is pictured right during her recovery
Jenna explained that the surgery involved surgeons reshaping the affected part of the skull, before holding it in position with plates and screws that get absorbed into the body
Two years after the operation, Ava had recovered enough to be flower girl at her parents’ wedding. She is pictured with the newly-married couple Jenna and Matthew, and her seven-year-old brother Luca, in April this year at Le Petit Château in Otterburn, Northumberland
WHAT IS CRANIOSYNOSTOSIS?
Craniosynostosis is a rare skull problem that causes a baby to be born with, or develop, an abnormally shaped head.
It is rare, affecting an estimated one in every 1,800 to 3,000 children. Three out of every four cases affect boys.
The irregular skull shape in craniosynostosis can cause persistent headaches, learning difficulties, eye problems and other symptoms.
Craniosynostosis is the result of the premature fusion of different sections of the skull.
This means the skull is unable to grow in affected areas.
When one area of the skull is prevented from growing, other areas may ‘overgrow’ to compensate and limit the pressure developing around the brain.
Although medics dismissed Ava’s symptoms, Mrs Carlin was adamant something was wrong.
‘When I was looking at her one of her eyes was a circle and the other eye looked oval,’ she explains. ‘One side of her forehead was pulled back. It looked like she had a lump sticking out on her forehead.’
Eventually they were referred to a peadiatrition who confirmed Ava had craniosynostosis.
Facing major surgery to ensure her brain had room to develop properly, the couple put off their wedding so Ava could recover well enough to be a flower girl, finally marrying in April this year.
Despite doctors saying it probably was not craniosynostosis, Ava was sent for tests, which confirmed the condition.
The medics told her parents that without surgery, the abnormal shape of her skull would prevent her brain from developing properly.
‘They said it wouldn’t affect her before she was 18 months old in any other way apart from cosmetically,’ Mrs Carlin said.
It took two years for the swelling from the surgery to go down but Ava (pictured left recently) now looks like any ‘normal’ toddler. Pictured right after the operation, the youngster’s parents were shocked by her appearance, saying it took years for her to ‘grow into her new skull’
Ava (pictured with her brother) was a ‘princess for a day’ at her parents’ wedding
Pictured recently on the left, ‘you wouldn’t know Ava had the operation’. After she was born, Ava’s mother noticed one of her eyes was oval shaped and she had a ‘lump’ sticking out of her forehead. The youngster is pictured right recovering after her surgery
‘But if she didn’t have the operation then it pressure would be put on the brain, which could have left her with brain damage.’
Ava went under the knife at Alder Hey hospital in Liverpool on June 12 2017.
Craniosynostosis sufferers aged over six months typically have open surgery.
This involves surgeons making an incision in the scalp and cranial bones.
They then reshape the affected part of the skull, before holding it in position with plates and screws that get absorbed into the body.
The surgery tends to be a one-off procedure. Although the operation was a success, it would be years before Ava looked like a ‘normal’ child.
‘After the surgery she didn’t look like we were expecting,’ Mrs Carlin said.
‘There was a lot of swelling and it took two years for that to go down and for her to grow into her new skull.
‘Now you wouldn’t even know that she had had an operation.’
Mrs Carlin (pictured left recently with Ava) knew something was wrong as soon as her daughter was born but was told her abnormally-shaped head was probably due to how she had been lying in the womb. The youngster still has a scar from the operation (seen right)
Ava’s parents waited until she was recovered to get married as ‘something to look forward to’
Despite all she has been through, Ava is a happy little girl who sees the funny side of her condition.
‘We joke about her having a new head,’ Mrs Carlin said. ‘Ava just thinks it’s funny and makes a joke about it.
‘We celebrate the anniversary of her operation and she asks, “is it my head’s birthday yet?”
‘She gets one extra day as well as her birthday.’
Mr and Mrs Carlin, who are also parents to seven-year-old Luca, waited to get married until Ava had made a full recovery from her surgery.
They became husband and wife during a ceremony at Le Petit Château in Otterburn, Northumberland.
Mrs Carlin, whose husband is a company director, said: ‘We waited until she was fit and well before we got married, it was something for us to look forward to.
‘We said “mum is going to be a princess, do you want to be a princess too?”
‘She was absolutely amazing, she was a little angel.’