Heroic toddler bounces back
After surviving risky surgeries, Maddie was almost killed by a common virus
Rachael Blitvitch says there was a tiny voice of doubt in her mind when her 2-year-old daughter was about to have her latest operation.
Five months ago, Maddison, or Maddie, was going into the operating room at Starship children’s hospital. Neurosurgeons would attempt to reshape her head, which had stopped growing because of a rare genetic condition.
“I had no control,” said Blitvich. “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.”
Maddie is approaching her third birthday. While most toddlers are reaching their expected milestones, she has had more operations than her grandmother.
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 warned an operation was not a good option and gently advised Blitvich to prepare a “death plan” for Maddie.
“I was told heart surgery was out of the question because it was too complex,” Blitvich said. “They [gave her] two weeks to live.”
Yet Maddie survived, and last year she had a successful heart operation — at Blitvich’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 Blitvich had no alternative.
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”, Blitvich said.
“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
HWatch the video at nzherald.co.nz baby Frankenstein,” she said.
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.
Emily Gray, Maddie’s sister, heard her mother scream for help. She called 111 and the first responder coached her through CPR.
Five minutes later, Maddie started breathing again. At Starship she was diagnosed with febrile seizures caused by a common viral infection. “It was pretty scary,” Blitvich 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’,” Blitvich said. “It’s really horrible and hurtful because Maddie is starting to notice and pick up on it.” Blitvich bites her tongue and tells her daughter she’s beautiful.