What it’s like to be the parent of a medically fragile child

“I often wake up in the morning in a panic, especially when I realize I have slept four consecutive hours with none of her life support equipment alarms having sounded. I’m afraid something malfunctioned and my child is dead.

“In the 15 seconds it takes for me to run to her room, I have made an action plan: call 911 and begin CPR on my little girl. I am trembling when I reach her bedroom door. Thankfully, today she is fine.

“I collapse in the doorway, recovering from the adrenaline rush, and trying to repress the memories of the times I have had to resuscitate her. It’s 6am and I’m already exhausted.”

Feeling stressed?

Medically fragile children live multiple medical conditions which may cause severe disability and are often in hospital, followed by numerous specialists and supports such as home care and rehabilitation services. Their parents live with incredible responsibility and stresses — emotional, physical, and financial.

They manage, navigating through the chaos because that is what parents do. Even if it costs them their job or their health, they put their child first.

But sometimes we all need help.

Enter Navigator

Launched seven months ago, the new Navigator program is a hub for parents of medically fragile children. It is part support group, part meeting place, and part fast track access to much needed support and connections for parents. It is also a learning lab to develop best practices to support families and increase awareness of parents’ lived experience to organizations that support them.

Parents in the program are linked with either one of four Navigators: two System navigators based out of CHEO or parent navigators based out of Pinecrest Queensway Community Health Center (PQCHC) who provide peer-to-peer support.

By bringing together parents with lived experience and licensed professionals, Navigator is a collaborative healthcare innovation. From the beginning, it has been a collaboration between parents of medically fragile children and professionals from the Children’s Hospital of Eastern Ontario (CHEO) and the PQCHC, with the Government of Canada’s Social Development Partnership Program providing funds to establish the program and run it for the first five years.

Partners in Health

Parents say Navigator’s greatest value is in connecting them to each other.

The solace of a hug, the warmth of an open heart, the connecting that happens over a cup of coffee — these can sustain parents through grueling times.

Parents are a critical support for other parents. “Who better to mentor, coach and provide emotional support than those who have already lived the experience?” said Julie Keon, one of the experienced parents that attended one of our parent consultations

It is also invaluable to have a single go-to resource. As the first point of contact for parents looking for information, services, or advice, the Navigator program saves time and energy for busy and exhausted parents.

Parents know what they need. That’s why the Navigator program has been designed not only for parents, but also with them. In March and September, Navigator hosted two consultations with parents to understand the gaps in services and hear what their needs are.

Even when the problems parents face cannot be directly addressed by Navigator, the program can bring attention to these issues and advocate for change to reduce the ongoing and systemic struggles that parents face.

“There is amazing momentum for change in the system right now,” said Chantal Krantz, Connected Care Program Manager.

While 29 families are currently enrolled in Navigator, by year five it plans to help 150 families in the CHEO service area. Ultimately, it aims to share its lessons with parents, community groups and healthcare providers across the country, benefitting the parents of medically fragile children from coast to coast to coast.

What about you?

Navigator is eager to learn from other organizations that support caregivers. Please share your thoughts about this program and stay tuned for news of Navigator’s progress.

To learn more, please visit the Navigator website.