‘We were given Daisy for a reason’: Qld girl will have more than 20 surgeries before she’s five

Seven-month-old Warwick girl Daisy, who has a rare genetic condition, will soon have an operation in which surgeons will cut her skull from ear to ear and bring the back of her head out to give her additional room.

Before the age of five, seven-month-old Daisy Stevens will have more than 20 surgeries to help give her the best quality of life as she lives with a rare genetic condition.

At 25 weeks’ pregnant, Debb Stevens from Warwick was told her unborn daughter would suffer from a rare and random genetic mutation known as Apert Syndrome.

The syndrome affects roughly one in 65,000 newborns and can cause early fusion of the skull, hands and feet bones.

Daisy was eventually born five weeks premature in Warwick, before the family was immediately flown to the Mater Hospital in Brisbane for monitoring.

“I think we were prepared for the hospital stay because we’ve done it before but we were definitely not prepared for the reality once she was born; it was quite a shock,” Ms Stevens said.

Daisy Stevens, seven months, who has a rare and random genetic mutation known as Apert Syndrome, with mum Debb. Picture: Mater Hospital

“There was a huge part of me that was hoping that they got it all wrong. It was also in the midst of Covid restrictions, so it was quite isolating.”

But Daisy did “incredibly well”, according to her mum, and was eventually allowed to come home at 39 weeks.

Now, at seven months old, Daisy is reaching almost all of her milestones, with Ms Stevens saying the next hurdle was her skull surgery next month that would likely be her most critical surgery.

“Because her skull is fused in the three places, if they were to leave it and let her head grow as normal, there would be a risk that her brain wouldn’t have enough room so it would cause pressure on the brain that could lead to intellectual disability and blindness,” she said.

Ms Stevens said the surgeons would essentially cut her skull from ear to ear and bring the back of her head out to give her additional room.

Daisy Stevens, seven months, with parents Debb and Caine, and brother Ollie, 3. Picture: Mater Hospital

After that, she would continue to have continuing surgeries to give her the best chance in life, including two major skull surgeries, multiple face surgeries to bring her face forward and give her room for her airways and eyes, surgeries on her hands, including having a cosmetic surgeon create fingers for her and facial surgery to have her cleft palate repaired.

But despite Daisy’s challenges in life, Ms Stevens said it was just become a part of their world that the family managed every day.

“We were given Daisy for a reason and she’s here to teach us so much, which she already is,” she said.

“We just make it work for Daisy. You find time and strength that you never thought you’d have.”

And though they’re further from the big hospitals, Ms Stevens said she had no plans to move the family away from their Warwick home.

“It’s the community that we adore and that we need to get us through it. She’s loved by so many people here,” she said.

“But if there are any Apert families in Australia, we’d love them to reach out to us.”