Surgeons will remove and then reconstruct a large part of Daisy’s skull so her brain can keep growing

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It’s the medical equivalent of piecing together a jigsaw puzzle.

Warwick baby Daisy Stevens will have surgery at the Queensland Children’s Hospital (QCH) on her skull next month to make more room for her brain to grow.

Surgeons will remove a large section of bone at the back of the seven-month-old’s head and, using specialised tools at a workbench inside the operating theatre, will turn the bone into a “few, different-sized pieces” to expand the skull’s volume.

In what she describes as being like putting a jigsaw puzzle back together, craniofacial surgeon Diana Kennedy will then reconstruct Daisy’s skull into a larger shape, using dissolvable plates and screws.

“It’s a big operation for a baby,” she said.

A newborn baby under intensive care in hospital
Daisy was born with Apert syndrome, which causes skeletal abnormalities.(Supplied: Debb Stevens)

Daisy was born with Apert syndrome, which causes skeletal abnormalities and is estimated to occur in about one in 65,000 births.

A key feature of the rare genetic condition, caused by a faulty FGFR2 gene, is the premature closure of bones in the skull, affecting the shape of the head and face.

In most other children, skull bones do not fuse until they are young adults, allowing for rapid growth and development in childhood.

‘She was just absolutely adorable’

Debb Stevens was 25 weeks into her pregnancy with Daisy when she and husband Caine were told after an ultrasound at the Mater Mothers’ Hospital in Brisbane their baby had suspected Apert syndrome.

“We were in shock,” Mrs Stevens recalled.

“We did a bit of research and then essentially gave ourselves an internet ban to just come to peace with it.”

Daisy in her pram.
Baby Daisy in her pram.(Supplied)

Daisy was born five weeks early at Warwick Hospital on January 25 and transferred by the Royal Flying Doctor Service to Brisbane, where she was taken to the Mater Mothers’ neonatal intensive care unit (NICU).

She has webbed toes and what are known as “rosebud hands” – her tiny fingers on each hand are fused together, resembling a rosebud.

The little girl will need extensive surgery throughout her childhood, including operations on her hands to create fingers.

Mrs Stevens said she was “over the moon” to have given birth to a baby girl when Daisy was born and despite her daughter’s challenges had an “overwhelming feeling of love” when she saw her in the Mater NICU the morning after her delivery.

“She was just absolutely adorable,” she said.

A baby girl, a little boy and their parents beside a river.
Daisy Stevens with her mum Debb, dad Caine and three-year-old brother Oliver.(Supplied)

Daisy’s early months of life have been a flurry of medical appointments, including consultations with eye doctors, the QCH respiratory team, ear, nose and throat specialists, speech therapists, physiotherapists and occupational therapists, as well as surgeons.

After much perseverance, Mrs Stevens is breastfeeding her daughter, who has a cleft palate – an opening in the roof of her mouth.

“She’s full-time breastfeeding and flourishing. She’s growing beautifully, she’s already putting weight through her feet, she can roll over, she can prop herself up.

“She’s doing really well. She’s incredible.”

Surgery will allow for Daisy’s growing brain

Brisbane craniofacial surgeon Dr Diana Kennedy
Dr Diana Kennedy says this type of surgery is very effective in babies.(Supplied )

Dr Kennedy, Queensland’s only female craniofacial surgeon and one of less than a handful across Australia, said next month’s surgery on Daisy’s skull was expected to take about four hours.

She will work with a neurosurgeon, who will delicately remove the back of Daisy’s skull from the dura – the outer, protective layer of the brain.

“Her little brain is trying to grow and trying to develop, but it’s got nowhere to go because of the constricted skull and so it’s growing upwards,” Dr Kennedy said.

“We want to stop that. That’s why we’re doing this surgery, mostly to accommodate her rapidly growing brain. We want to normalise her anatomy in order to optimise her development, so she may reach her full potential.

“It’s not something we could do in adults very effectively but in babies we can because their brain is growing so much.

“They’re so good at healing and making new bones whereas in adults, it wouldn’t heal in the same way.”

A baby being wheeled to an ambulance by paramedics.
Daisy contracted COVID-19 and pneumonia. (Supplied)

Surgery will help Daisy ‘fit in’

Daisy will have another operation around the time of her first birthday, this time focusing on the front of her head.

Along with facilitating brain expansion, that operation will focus on enlarging her eye sockets to make more room for her eyes and on normalising the shape of her head.

A CT scan of a baby's skull
A CT scan of Daisy’s skull showing bones have already fused.(Supplied)

She will also undergo repair of her cleft palate to aid her feeding and allow speech development.

“All babies are beautiful, and we celebrate their differences,” Dr Kennedy said.

“We’re not just focusing on normalising anatomy. But it is very nice to be able to address the cosmetics because a big part of our society is children fitting in and making healthy peer relationships.

“We know that children that look or feel very different can sometimes have difficulties forming those peer relationships.

“We don’t under-emphasise the importance of children feeling good about how they look.”

Next year, surgeons will begin the series of operations Daisy will need to separate her fingers.

In primary school, she will have more reconstructive surgery on her face to improve her breathing and the position of her eyes.

A baby with an airline in her nose lies on a white blanket
Daisy’s condition only occurs in about one in 65,000 births. (Supplied: Debb Stevens )

Dr Kennedy, herself a mum, said she chose paediatric craniofacial surgery as a specialty because she couldn’t “think of a more powerful way to be able to help little kids”.

“Our face is what we show the world, and our brain is so much of what we are.

“It’s our personality, it’s the way we move, it’s the way we talk. To be able to contribute and help kids optimise their development and feel good about themselves, I think that’s a very rewarding part of plastic surgery to work in.”

Dr Kennedy expects to continue follow-ups with Daisy until she turns 22.

“It’s a long journey. I very much love the idea of meeting a little baby and staying with them and staying with the family for their whole journey.

“It’s important to get to know them. You learn to trust each other and support each other through the process.

“It’s not just one operation when they’re a baby and it’s done. It’s lots of operations over many years.”

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