The night Lisa O’Hara heard a strange noise coming from her 17-month-old daughter Carleigh’s baby monitor, her first thought was an innocent one. “I thought it was the wind,” she says. She was shocked to find the sound was actually coming from Carleigh, who lay unconscious in her crib and was struggling to breathe.
This was to be Lisa’s first experience with her now threeyear-old daughter’s epilepsy or seizure disorder, diagnosed after a week spent in BC Children’s Hospital’s Pediatric Intensive Care Unit. “It was surreal,” says Lisa. “Because I think a lot of people think that when you see a seizure it’s convulsing and maybe foaming at the mouth, and that’s not at all what she was like. To me I didn’t even know how they knew she was having a seizure. I was kind of in a daze.”
Lisa and her husband, Ryan, received the devastating news that extensive testing on the electrical activity and structure of Carleigh’s brain revealed abnormalities in her frontal lobes. And when Carleigh regained consciousness she was a changed girl.
“She lost everything,” says Lisa. “She couldn’t swallow. She couldn’t talk. She couldn’t do anything. All she did was scream, but she had no voice because she was intubated.” What exactly happened to Carleigh that night is still something of a mystery. She has undergone over 100 tests, sent as far afield as Amsterdam, and the results have all come back negative. Acute disseminated encephalomyelitis, or ADEM, was at first suspected. ADEM is an infection that affects the brain and causes inflammation or damage to different areas within the brain, but a diagnosis was never confirmed. What was confirmed was epilepsy with developmental issues. Epilepsy is a brain disorder, says Kim Tully, former acting program manager of Nursing and Acute Rehabilitation at Sunny Hill Health Centre for Children, where Carleigh went for her rehabilitation.
“Basically it just means that your electrical activity of the brain doesn’t always function correctly; it might misfire or it’s overactive. During this abnormal electrical activity a person’s level of consciousness, body movements or sensations may be affected,” says Kim. Epilepsy is not an uncommon disorder. Roughly 40,000 people in British Columbia and around 300,000 people in Canada have epilepsy or a seizure disorder. Because of the severity of Carleigh’s loss of development, a specialized brain injury team at Sunny Hill stepped in to provide the professional care she needed. This multidisciplinary team includes, among others, nurses, physicians, social workers, occupational therapists, physiotherapists, speech language pathologists, psychologists, recreational therapists and staff who help with infant development. “There was a therapist working with her every day on something,” says Lisa. “I can’t say enough about Sunny Hill. From her social worker to basically all of the therapists and the nurses, they were all fabulous. They just fell in love with Carleigh. They were like our family.”
Staff at Sunny Hill set a goal for Carleigh: they wanted to get her swallowing by herself and crawling before sending her home. It took three months to achieve this. Lisa and Ryan appreciated Sunny Hill’s family-focused approach, which included a social worker giving them a tour of the facility prior to Carleigh’s transfer from Children’s Hospital, and arrangements for six months of acute care from the Community Brain Injury Program for Children and Youth in British Columbia when Carleigh was discharged.
“At Sunny Hill we encourage the families to be a part of the team, right from day one,” says Kim. “We bring them on board, explain to them what’s going on, who’s involved and really see what goals and hopes they have for their child, and try and build that into the treatment plan.”
The transition from Children’s Hospital to Sunny Hill will be made smoother for patients when the new hospital opens in 2017 and Sunny Hill is relocated to the hospital’s campus. Having Sunny Hill at the same site as the hospital will eliminate the need for Sunny Hill patients like Carleigh to travel to Children’s Hospital for follow-up care, IV therapy or X-rays, as they currently do. To date, Carleigh’s progress has been slow, physically and mentally. She is still in diapers, is unstable on her feet and is not yet talking. But she is improving and, Lisa says, Carleigh is a happy child.
“She’s always had a smile. That’s something all the therapists at Sunny Hill would say about Carleigh,” says Lisa.
“She was a joy to work with because she was happy to see them. I try to update all the therapists and send them pictures and stuff because I really felt like they cared and wanted to see the best for my child.”