|Condition:||Pierre Robin Syndrome|
“The number of surgeries she’s had? We lost count somewhere in the 40s,” said Shaelyn Blanchette, mother of 10-year-old Danielle who has been through what no child should ever experience.
Baby Danielle of Osler was born at a normal, healthy weight following her mom’s healthy pregnancy. Upon her arrival, however, doctors immediately whisked her away to the Neonatal Intensive Care Unit (NICU). They weren’t sure about what was wrong, but after careful assessment doctors determined she had Pierre Robin Syndrome, otherwise known as small jaw and cleft palate.
Only two days later, Danielle suffered several close calls from a collapsing airway. Doctors were forced to revive her with CPR.
“It was really hard. It took a while for them to pinpoint what it was,” said Shaelyn. “You don’t really understand what they’re telling you and we didn’t know how serious her condition was until we almost lost her a few times.”
At two months old, her first of many surgeries could no longer be avoided. She was airlifted to Edmonton’s children’s hospital for a tracheostomy to prevent her airways from closing off. Her family and doctors knew that Danielle was destined to spend much of her childhood inside hospital walls. It was a heartbreaking time for the family, who also had a two-year old at the time to take care of.
As she grew, Danielle needed more surgeries. At eight months old, she was given a gastrostomy-tube to help her development, and it wasn’t long before doctors discovered she had scoliosis and kyphosis, a condition that causes the spine to curve abnormally. Her spinal complications became extremely severe, and even more surgeries were needed on her fragile body.
Danielle was in and out of halo traction for several years, putting big restrictions on her ability to be an active and playful kid. Travelling back and forth between Saskatoon and Edmonton for surgeries was hard on the family.
Danielle’s spine is now entirely fused after many operations and the Osler family only has to travel occasionally to Edmonton. In the near future, she will have her airways scoped and doctors will also work on getting her jaw pulled forward. Her physical development has hit many road blocks over the years, and Danielle’s knees, neck and hips will require surgery to ensure she can be active in the future. She is one of the many children who will, on occasion, call the new Jim Pattison Children’s Hospital home.
“Today she is doing really well,” said Shaelyn. “She’s healthy, having fun, playing with friends, and we are grateful that she is easily having her best summer yet.”
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