Donna Davis- 2026

Our firstborn child was born in 1977 with Spina Bifida, a neurological congenital defect in which the spine is not formed correctly. The spinal cord often protrudes through the incomplete spine and is contained in a sac of spinal fluid on the outside of the body. It results in hydrocephalus in the majority of cases and also varying degrees of paralysis.

We live in the farthest southeast part of the province- 3+ hours from the closest acute care hospital that could provide care for our daughter. We were new young parents with limited financial means. The numerous trips to the care center were very stressful due to the expense, having to take time off work for the trips, and finding child care when we had more children. The lack of coordination in providing appointments to see the numerous specialists and clinics for our daughter added to the expense and more trips than necessary. Having our concerns regarding our daughter’s health dismissed or ignored because it didn’t fit into the providers plan for the day led to delay in life saving surgery which could have had devastating consequences

I ask providers to consider how a chronic condition or a disease can affect a family financially, emotionally and how stressful it can be. Please ask us what appointments work for us. Please ask if we are worrying about making the appointments due to finances, taking time off work etc.; then ask us how you can make it easier for us.

Lynsey Nantais – Collaborative Care

Please hear us when we share our concerns about our loved ones-we know that person better than anyone else; we know what is normal for them and what is not. Please be present when you are caring for our precious child. Let us know by your actions that we can trust that you will care for our child fully, Please include us into the circle of care by inviting us to ask our questions and share our concerns. Ask US how we find our child/loved one today. Make this part of your daily work until it is second nature. It could save a life and be so, so rewarding for you in a demanding, complex job.