Baby with rare condition gets major reconstructive surgery at Sick Kids

TORONTO- A team of doctors wearing hairnets, masks, and navy scrubs crowd around a monitor displaying a 3D image of Bella Stone’s skull.

Dr. Chris Forrest is the lead in this operating room and he walks his team through the six-hour procedure to remodel the face of the 19-month-old lying on the table.

Bella has a rare condition called Craniofrontonasal Dysplasia that can cause babies to be born with a flat, wide skull, their eyes wide-set. In Bella’s case, a part of her skull had been fused in place, leaving little room for her brain to develop.

“We now have made space for the brain, we put the eyes into a little bit better position and we’ve improved the balance of the craniofacial skeleton,” said Forrest, the head of plastics &  reconstructive surgery at the Hospital for Sick Children (SickKids)

The facial remodelling is the second major operation Forrest has performed on the baby.

Bella was born in St. John’s but came to Toronto earlier this year to have a procedure to expand the back of her head.

Children with Craniofrontonassal Dysplasia have tall and narrow skulls which can restrict the brain’s growth in addition to eyes set far apart and deep into skull.

“The amazing thing is that children bounce back from this very, very quickly. We have a fantastic team of people that includes nurses, the anesthetists, as well as surgeons and we work with the neurosurgeon as part of this process. So together, doing the operation in this day and age, we’re able to have children recover in a much faster time then there used to be,” said Forrest.

Bella may need another operation to bring her eyes closer together but her parents Lisa and Gerry Stone say they have time to make that decision.

“We’ve given it a lot of thought and it is a very risky procedure. We’re probably going to let her choose down the road whether or not she wants to do that,” Lisa Stone said. “Really it seems to me a lot of that is cosmetic, so with regard to these skull reconfiguration, the main concern was her brain flow. We had to allow room for that, moving the eyes closer together it’s really not something we need to rush into.”

The surgeries that have been done so far and the travelling back and forth from Newfoundland to Ontario for consultations and follow up care aren’t cheap.

The Stone’s extended family started an online fundraising campaign to help the first-time parents cover their travel costs.

Their local community has also helped by hosting auctions and soon there will be a 2015 calendar for sale called ‘Bella’s secret Garden.”