A heroic toddler born with brain and heart defects has had risky surgery to change the shape of her head and allow her brain to grow. But that was not the end of her health problems, Carolyne Meng-Yee reports.

Rachael Blitvitch says there was a tiny voice of doubt in her mind when her 2-year-old daughter was about to go under the knife for her latest operation.

Five months ago, Maddison, or Maddie, was going into the operating room at Starship Hospital. Neurosurgeons would attempt to reshape her head, which had stopped growing because of a rare genetic condition.

"I had no control," said Rachael. "But I knew she needed it done. I gave her a big kiss, and said 'I love you. Be strong. The angels will look after you'. But when I walked out I couldn't breathe, I was gasping for air."

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Maddie is approaching her third birthday. While most toddlers are reaching their expected milestones, she has had more operations than her grandmother.

READ MORE: Girl Wonder

She was born with a complicated combination of medical problems including Pfeiffer 2 Syndrome, which affects one in 100,000 births and is characterised by a clover-shaped skull.

When she was born, doctors' main concern was the condition of her heart. Surgeons had warned that an operation was not a good option and gently advised Rachael to prepare a "death plan" for Maddie.

"I was told heart surgery was out of the question because it was too complex," Rachael said.

"They [gave her] two weeks to live."

After surviving risky surgeries, Maddie was almost killed by a common virus. Photo / Greg Bowker
After surviving risky surgeries, Maddie was almost killed by a common virus. Photo / Greg Bowker

Yet Maddie survived, and last year she had a successful heart operation - at Rachael's insistence.

The next hurdle would be just as daunting for Maddie and her neurosurgeon Dr Peter Heppner.

"The problem is her brain just keeps wanting to grow but her head isn't growing or expanding to accommodate it", Heppner told the Herald on Sunday.

Maddie's head operation - performed by surgeon Jonathan Wheeler - was risky but Rachael had no alternative.

"There was a tiny bit of doubt at the back of my mind. It was a different feeling from the heart operation which I pushed for."

To his relief, Heppner said the surgery five months ago went to plan.

"We elongated the head from front to back. We've made more space for her brain and we've allowed the brain to expand to be in a slightly more normal shape rather than being squished.

"The skull was fusing up and not letting the brain grow, what we've done is make the skull bigger."

Maddie soon bounced back to her "cheeky self", Rachael said.

"There was a lot of blood everywhere. Her head was shaved and bandaged up. One minute she was post-op, the next she was dancing to the Wiggles. It took me a while to get used to the scar because it was ear to ear. Screws were sticking out of her head like baby Frankenstein."

But her ordeal was not over.

Rachael Blitvich says despite surgery to change the shape of her daughter Maddie's head, she still gets stared at and mocked in public. Photo / Greg Bowker
Rachael Blitvich says despite surgery to change the shape of her daughter Maddie's head, she still gets stared at and mocked in public. Photo / Greg Bowker

After surviving risky heart and head surgery, Maddie was nearly killed by a common virus this week.

The toddler was watching a movie with her mother when she vomited and stopped breathing.

"My instinct was 'This is it, her heart is going'," Rachael said.

"I looked at her face and thought 'brain damage'. I started rubbing her chest and yelling at her but she didn't respond. She was making gurgling sounds and her eyes were fixed at the ceiling."

Emily Gray, Maddie's sister, heard her mother scream for help. She called 111 and the first responder coached her through CPR.

"She was blue and her eyes rolled back," Gray said. "She was limp and not responding to us. I could feel mum's panic and the horror in her voice.

"I thought 'This is the moment my sister goes'. But I wasn't ready to give up."

Five minutes later, Maddie started breathing again. She was taken by ambulance to Auckland's Starship hospital where she was diagnosed with febrile seizures caused by a common viral infection.

"It was pretty scary," Rachael said. "By the time the ambulance arrived Maddie's temperature soared to 40.3C which triggered the seizure. I suspected her heart was going or it was brain damage. I never expected in a million years it was a common virus that could've killed her."

While surgeons have fixed Maddie's heart and brain, they can't stop people from staring in public.

"The kids will yell out 'Mum, look at that girl with the big head'," Rachael said. "It's really horrible and hurtful because Maddie is starting to notice and pick up on it. She follows the kids with her eyes and waves to them but they just laugh at her".

Rachael bites her tongue and tells her daughter she's beautiful.

"The surgery's been amazing for Maddison. She's more alert and she talks more. She's also doubled the sassiness - she still calls the shots."