Sick Kids doctors treat baby with rare skull condition

Watch above: How a doctors at Sick Kids hospital treated a baby with a rare skull conditions. Crystal Goomansingh reports. 

She’s dressed in pink, with a mop of blonde hair and big blue eyes. Despite being born with a rare skull condition, baby Bella is a happy little girl.

Bella was born was frontonasal dysplasia – a skull condition so rare, doctors say it occurs in one of every 100,000 births. Some babies born with the condition have a flat, wide skull, their eyes wide-set. In Bella’s case, a part of her skull had fused in place, leaving little room for her brain to develop.

Her mom, Lisa Stone, remembers when she first gave birth to Bella: “They had all kinds of people around her and they weren’t saying anything and then they took her out of the room,” Stone told Global News.

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What concerned the new mother more was that Bella had no brain activity. But Lisa and her husband Gerry – both hopeful parents – hung on.

“I asked for a chance of recovery and [the doctor] said highly unlikely,” she said. The couple kept looking after their baby – they combed her hair, they sang to her.

About three days later, Bella showed improvement.

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“Somehow we got lucky,” Stone said. Now, baby Bella is slowly progressing, both neurologically and physically.

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She’s also in the hands of Sick Kids Hospital doctors who are looking after her development.

“The structure of the skull which allows the growth of the skull has fused prematurely and if we allow this to continue to grow on its own, she would run into some serious issues in terms of skull shape,” Dr. Christopher Forrest, chief of the division of plastic and reconstructive surgery, explained.

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He made an incision in Bella’s skull and attached “destractors” on both sides of her head. They’re akin to little antennas – kind of like braces – that apply gentle pressure to create more space to reshape the baby’s head. Twice a day, her parents turned the antennas to help with the reshaping.

Sick Kids is considered a world leader for its cranio-facial program. Forrest says the hospital will do about three of these intricate procedures each year.

Forrest receives emails from families around the world asking for his opinion on their unique circumstances.

READ MORE: Siblings with rare disease could hold key to stopping deadly viruses

The experience has been taxing on the young family – but Bella’s family has support. Her website has garnered more than $30,000 to help cover off medical expenses and travel costs to take Bella from Newfoundland to Sick Kids.

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Bella’s parents are also cognizant of how their baby will be treated by the world. When Stone takes her out on everyday errands, such as buying groceries, she already gets “looks” from others. But the family is staying positive, Stone said.

Bella recently had the destractors and bolts removed from her head. Her skull used to be flat, but Forrest had successfully rounded the frame and made room for her brain to grow.

This summer, the doctors will work on creating eyebrow bones and rebuild her nasal bridge so she has a more natural face.

“I want to show her off to the world because she’s come to far. She’s an angel,” Stone told Global News.

Her full story is shared on her website here.

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