Parent power

For me, the highlight of the Canadian Association of Pediatric Health Centres’ conference in Winnipeg last week was the parents who spoke and participated.

On Tuesday, we were wowed by two parents who talked candidly about how their worlds’ changed when their sons were born with disabilities. Despite the initial struggles and ongoing challenges, both families made a conscious decision that they would create a happy family, and it was obvious (see photo above) that they’d been successful.

Karen Netzel (second from left), who runs a neonatal family support program at Children’s Hospital in Winnipeg, spoke about her journey raising Matthew (third from left), now 14, who was born at 25 weeks gestation and spent seven months in the neonatal intensive care unit. Karen noted that professionals spoke about Matthew’s future ‘quality of life’ as uncertain and this pushed her to come to her own definition of what constituted a rich life: the ability to love and be loved.

We then heard from Serge Bilodeau (second from right), father to Frédéric, 28 (far right), who has cerebral palsy, and Canadian freestyle skier Alexandre, who won a gold medal at the Vancouver Olympics. “The determination of Fred showed our other children that there was no limit to what they can do,” Serge said. “Alexandre learned patience and understanding and so many other things that kids his age don’t get. At a young age, Alexandre would go to school to pick up Fred – who went to a school for children with handicaps. Alexandre would come back and say: “These people are so happy. The problem is not them, it’s us, when we complain.”

There were parents whose children had died – parents who were still advocating to improve pediatric health care for others. Jonathan Blumberg gave a moving talk at the Canadian Family Advisory Network session on Sunday about his daughter Sasha, who lived for 744 days, and a family fund he's developed to support family-centred projects at Toronto’s SickKids. I’ve asked Jonathan to write a piece for BLOOM reflecting on palliative care and you can read his blog at Sasha Bella Stein Blumberg Forever 2143124.

Back to the CFAN session. During introductions, there was a First Nations woman who spoke about caring for her nephew’s son, who had been born exposed to crack. She described health care on Canadian reservations as “third-world.”

There was a foster mom who called for a ban on alcohol because of the effects of fetal alcohol syndrome.

There was a mom of five children who noted that – unlike parents whose children were born with disabilities – she “chose” to adopt her son with cerebral palsy and round-the-clock medical needs.

There were many parents of preemies – some of whom had survived and some of whom hadn’t.

There were parents of kids whose conditions were undiagnosed.

There were parents. And their stories, perspectives and efforts to improve children's health were powerful.

A special thank you to Marcel Panas for providing the photo!