Giving a little girl the ability to smile
When Tori Kosempel was born in May 2006, the Essex, Ontario girl wasn’t able to move one side of her tiny face.
Once initial testing confirmed that she hadn’t suffered a stroke, doctors then suspected she had Bell’s palsy – a type of temporary facial paralysis that results from a cranial nerve dysfunction. Most people recover from Bell’s palsy spontaneously with near-normal or normal function in as little as 10 days to three weeks.
When Tori’s condition hadn’t improved in over a year, she was referred by her family doctor to the province’s only facial nerve clinic, located at London Health Sciences Centre (LHSC). Finally, at the age of two, Tori and her parents received a diagnosis – she had been born with Moebius Syndrome.
“After two years of worrying about what was wrong, it was such a relief to finally get a diagnosis,” recalls mom Danielle Kosempel. “While we still had a lot of questions and concerns, knowing that Tori hadn’t been in any physical pain gave us some of the peace of mind we were searching for.”
Moebius Syndrome is a rare disorder where the nerve and muscles that move the face are absent. In Tori’s case, she was missing her sixth and seventh cranial nerves, so the ability to smile when seeing a loved one or meeting new friends at the playground – something most people take for granted – was simply not possible for her. However, all hope was not lost.
Dr. John Yoo, chair/chief of the department of otolaryngology – head and neck surgery at LHSC and Dr. Damir Matic, paediatric craniofacial surgeon at Children’s Hospital at LHSC, explained to the family that some aspects of Moebius Syndrome could be surgically fixed; they would be able to give Tori the ability to smile.
“You can imagine how devastating the news that their beautiful child would never fully smile would be for a parent,” says Dr. Yoo, “So it’s particularly rewarding for us to be able to offer a surgical solution.”
While Drs. Yoo and Matic had done the surgery many times before, Tori was the youngest patient they had offered the procedure to. With Tori understanding more and more that she was different from other children, the family was anxious to move forward. Unfortunately for the best possible outcome they would need to wait until she had at least passed her early childhood growth spurt.
“Even though we knew it would be really hard for us to keep the surgery on hold, especially as Tori grew more self-aware, my husband Chris and I decided that we would wait as long as possible and would just know when the time was right,” says Kosempel. “From there, our busy life with three small children continued to move forward.”
It was while the family was celebrating on New Year’s Eve in 2010, when the moment struck. Tori, now four-and-a-half years old, and her mom were flipping through a photo album when she pointed to a photo of mom smiling and said “I wish I could smile just like you mommy.” It was the first time she had ever said anything about it and with those nine little heartbreaking words they instantly knew she was ready and it was time for the surgery.
Within weeks the family was back in London meeting with Drs. Yoo and Matic to go over the details of the surgery. And on July 4, 2011, Drs. Yoo and Matic performed the eight-hour surgery.
With no muscles to move her face and no nerves to move the facial muscles, it was a complex procedure. A functioning muscle from her thigh, along with the nerve that makes it move, was removed and transplanted in her face. The muscle was then repositioned to mimic a person’s smile muscle and attached to the nerve that clenches her jaw and the tiny blood vessels that supply the muscle were then connected to the surrounding blood vessels of her face. Once fully healed, this would allow her to smile by clenching her jaw; and over time she would gain the ability to smile spontaneously.
It normally takes about three months for the nerve to re-grow into the muscle to make it work. However, because children heal much faster than adults – and because she was so determined to smile – Tori was able to smile for the first time in her life after only 10 weeks.
“Everyone really took such good care of her and we’re so grateful for that,” says Kosempel. “The doctors and nurses spent time with her, talked to her and never made her feel rushed about anything. Their actions demonstrated that they cared, that Tori was more than just a number to them. She stayed in Children’s Hospital for seven days following her surgery and she didn’t want to leave when it was time to go. Even now she still asks to go back to visit the unit so she can play in the playrooms again.”
Today Tori is an outgoing, confident seven-year-old who no longer feels different from other children.
“Children’s Hospital changed Tori’s life,” says Kosempel. “This one surgery has given her so much confidence. She no longer feels like she’s different and we are incredibly grateful for that. For us, giving back to the hospital and helping other sick children is just one small way to pay it forward. It’s a concept we’ve instilled in all of our children.”
To her credit, Tori is already committed to helping other children. Last year she cut and donated more than seven inches of her very long hair so that a little boy or girl going through cancer treatment would smile again, because as she puts it “everyone deserves to smile.”
She is currently growing her hair out so she can do it again.