Not many children will undergo 20 surgeries before their fifth birthday.
But Daisy Stevens is no ordinary child.
The seven-month-old Warwick baby was born with Apert Syndrome, a rare genetic condition causing skeletal abnormalities and affecting one in 65,000 births.
Daisy’s mother Debb had never even heard of the condition.
“During my pregnancy with Daisy, the scanning equipment in Warwick couldn’t detect her fingers or toes,” she explained.
“So, we were given a referral to the Mater Centre for Maternal Fetal Medicine for further explanation.”
The 25-week ultrasound appointment at Mater Mothers’ Hospital in Brisbane revealed Daisy’s suspected condition.
Mrs Stevens said she gave herself “an internet ban”.
“Once you get the diagnosis in utero it doesn’t matter how much research you do or don’t do,” said Mrs Stevens.
“It will be what it will be.”
Daisy was born five weeks premature at Warwick hospital and quickly flown to Mater Mothers’ Neonatal Intensive Care Unit.
“I was petrified when I saw Daisy for the first time,” Mrs Stevens recalled.
“I couldn’t see her fingers, her little toes were fused together, and her face was so swollen.
“Reality came crashing down.”
Mrs Stevens visited Daisy the following day in the intensive care unit.
“I walked into the ward and saw her snuggled in a little pink blanket.
“I just melted, and I have been in awe of her ever since.”
Mrs Stevens was incredibly complimentary of the “wonderful medical care” she and Daisy received from nurses and doctors.
“They [nurses] were the epitome of what you need when experiencing the toughest moment of your life,” she said.
Mater Private specialist and Queensland’s only female craniofacial surgeon, Dr Diana Kennedy said Daisy’s condition was “extremely rare”.
“We might treat three to four children [ with Apert Syndrome] across Queensland and northern New South Wales each year, and some years we may not treat any,” she said.
Dr Kennedy and her team will perform Daisy’s first craniofacial surgery next month.
“The aim of the surgeries is to normalise Daisy’s physical anatomy as much as possible in order to optimise her development and function, while also aiming to improve how Daisy looks and feels about herself,” explained Dr Kennedy.
“This is very important to a child’s psychosocial development and helps promote and foster formation and positive peer relationships.”
However, reconstructing Daisy’s skull to allow room for her brain is only the first step.
She will also undergo several three to four-hour operations to address other issues.
“We will need to also move her brow bone forward to protect her eyes while focusing on making more room at the front of her skull,” said Dr Kennedy.
“There’s a lot going on for someone so little.”
Despite the complicated journey ahead, Mrs Stevens said Daisy “had taught her many things”.
“I worked in retail for 16 years and naturally led a very busy and hectic life,” she said.
“Suddenly I’ve slowed down and questioned what is valuable in my own life.”
Mrs Stevens said she saw many children in the Intensive Care Unit with much worse conditions than Daisy.
“I saw babies with only one lung and others having spinal surgery who may never walk,” she said.
“Yes, Daisy has some challenges ahead of her, but we are still so grateful that she is here.”
Mrs Stevens would like Australian parents to have open dialogues with their children about people who are different.
“Kids are not born to be cruel, but they tend to say the first thing that comes to their mind,” she said.
“As parents, I think we need to educate our kids and explain that people who look different are not scary.
“They are not any less of a human.”
The next decade of Daisy’s life will consist of countless optometry, respiratory and physiotherapy appointments, and multiple operations.
However, Mrs Stevens was optimistic about her daughter’s future.
“We are relying on our doctors and also on prayer,” she said.
“My family and I are big believers that God only gives you what you can handle.
“Daisy was obviously sent here to teach us a hell of a lot.”
You can follow Daisy’s journey on the Daisy Blooms – Apert Syndrome Awareness Advocate Facebook page.
