Written by Michelle Falk
For new parents with an infant who has been ill, there’s often a feeling of having overcome their child’s biggest hurdle – especially if invasive medical procedures were needed. But for survivors of life-saving therapies, it can be just the beginning: these infants are at risk of developing complications, such as neurodevelopmental sequelae, which can affect everything from motor and communication skills to learning abilities. The Complex Pediatric Therapies Follow-up Program was stated 20 years ago for just this reason – to support families with their child’s development and improve the quality of life for all involved.
Saige Werkman, now eight years old, is a part program participant. After having open-heart surgery, extracorporeal membrane oxygenation (ECMO) and a heart transplant all before her first birthday, her parents Gloria and Wes were simply worried about keeping their daughter alive. “You don’t really think of anything else,” they remember. Thought she recovered physically, Saige will need speech support and occupational therapy long term, and will continue to have some learning difficulties compared to her peers. “I was not prepared for that. You just think they’ll get healthy,” says Gloria. “You don’t realize there are a lot of others things that come along with it.”
The program’s main purpose is to provide families with developmental services should these be needed after early therapies. Multidisciplinary clinics assess children to see if there are any concerns, and them implement strategies, offer programming, act as liaisons with the community and provide access to required services.
The program was envisioned by Dr. Charlene Robertson, a developmental pediatrician who spent a lifetime working in neonatal and pediatric developmental follow-up. In the course of her work, she noticed high numbers of pediatric heart patients with developmental delays in early childhood. Wanting to help young patients and their families, Dr. Robertson joined Dr. Ivan Rebeyka, a pediatric cardiac surgeon at the Stollery Children’s Hospital, to begin a pilot project in 1996. By 1999, Alberta Health and Wellness stepped in and provided a grant, allowing the Follow-up Program to be launched in its full capacity. Co-ordinator Gwen Alton, an MN with experience in pediatric intensive care, also joined the team.
The Complex Pediatric Follow-up Program’s research shows that often life-saving therapies leave children with more than just physical battle scars. Gwen explains that the prolonged illness and hospitalizations these children undergo in early-life increases the likelihood of developmental, social and cognitive delays. “Some of these children have had open-heart surgery, but have also been on ECMO [heart-lung machine], and/or required a transplant. Some also have further complications such as infections or strokes that are risk factors for learning delays,” says Gwen.
The Follow-Up Program is open to all young children in Western Canada who have undergone major invasive therapy such as: open-heart surgery, solid organ transplant (heart, kidney, liver), and ECMO in Alberta. Research shows at least at 20 per cent likelihood of these developing delays.
“Many of these children are at risk for learning and functional disabilities,” explains Gwen.
The Follow-up Program aims to intervene as early as possible. Families are approached before they leave the Stollery Children’s Hospital.
“The sooner that we help children, the greater potential to help alleviate secondary developmental problems. It’s never too late, but they do much better the earlier that they have supports,” says Gwen. Children are assessed at six months after their treatment, then again 18 to 24 months, and then again at four to five years of age. The program facilities early interventions for children under three years old, and early education for children ages three to six. The Follow-up Program team ensures children are properly assessed before they start school, so the education system will be able to provide them with adequate supports if needed.
“There’s not another program like this in Canada,” says Gwen. She and Dr. Robertson have carried the program for years, and passionately believe in its necessity.
Since its launch, the initiative has helped more than 1,600 children and their families. In Edmonton, the team works out of both the Stollery Children’s Hospital and the Glenrose Rehabilitation Hospital. Follow-Up Programs are also run out of urban locations throughout Western Canada: the BC Children’s Hospital (Vancouver), Alberta Children’s Hospital (Calgary), Regina General Hospital, Kinsmen Children’s Centre (Saskatoon) and the Children’s Hospital in Winnipeg at existing neonatal or developmental follow-up clinics.
Children may participate up until age five, but Gwen hopes funding will one day be available to keep kids in the program into adolescence as there can be subtle cognitive delays that only before to present between either and 12 years. This is partially caused because some of the children may have isolated defects and if they do not receive specific supports, “they end up doing okay in Grades 1, 2, and maybe 3 – but then as concepts get a little bit more difficult, it gets harder for them.”
If they are not properly assessed, these students go largely unsupported and experience difficulty in completing assignments, organizing their work and being able to pay attention in class.
Mandi Sauve echos Gwen in her hopes for extending the age of participation. Her son Corie, now 12 years old, is a graduate of the program but she feels he and her family would benefit from continued follow-up care. “I wish we’re able to go longer with the kids, in their age limit, because it is nice to continue the support,” she says. Corie was born with hypoplastic left heart syndrome and, as a result, had four open-heart surgeries. He is now doing well for the most part, but still struggles with anxiety and is considered slightly delayed academically.
As part of the Follow-Up Program, participants agree to be part of an ongoing research study, which seeks to improve future patient care and monitor effects of current practices. Their research has direct implications for pediatric intensive care practices at the Stollery, as well as improving parental counseling and validating the need for follow-up programs.
Research conducted between 2002 and 2007 found 28 percent of children with hypoplastic left heart syndrome experienced permanent sensorineural hearing loss, needing amplification to hear. Working with nurses and pharmacists, the program’s researched discovered that hearing loss was caused by the administration mode of a diuretic drug called Lasix (furosemide) in patients undergoing treatment for hypoplastic left heart syndrome. As a result this procedure was changed. There has been little hearing loss since. As mentioned previously, infections and strokes have adverse developmental effects; the program’s research has confirmed this, and hence the Stollery Children’s Hospital has renewed efforts to reduce these complications. “These examples of evidence-based research that has translated into practice,” says Gwen.
In the past 20 years, the partnership between the Complex Pediatric Therapies Follow-Up Program and the Stollery has become essential to the ongoing care and monitoring of survivors of life-saving therapies.
Published Winter 2016, Stollery Children’s Hospital Foundation