“We are not alone.”

My son, Dani, was born with congenital heart disease. Dani’s disease particularly affected us because it was a complete surprise at birth and was not diagnosed during pregnancy.  He needed three drugs every day for several months to help his heart work without being too exhausted and to reduce water retention in his lungs. Since he was too weak to drink from my breast or a bottle, he had a feeding tube inserted and received fortified breast milk from the age of 2 - 6 months old. Dani was hospitalized twice.

The first time was to implement his feeding tube and to teach my partner and I how to insert it safely from home. The second time was for open-heart surgery to close the two holes in his heart when he was 5 months old. During Dani’s first year, we had plans to travel the world together as a family, but we put our trip on hold. We had to be in Montreal permanently as we had weekly doctor’s appointments. The appointments ran one entire day at the hospital, morning to evening, every week for five months until Dani’s first surgery. It was hard. Dani was never able to resume breastfeeding, even after his surgery. The process to feed Dani overwhelmed us -- we were often sleep deprived and found our memory temporarily affected by our exhaustion.  

Because I would have liked to have heard others' similar experiences while I was going through this -- I take the time, as a mom and a Heart & Stroke employee, to listen regularly and reassure other mothers who are going through similar situations. There are support communities like the Heart & Stroke's Facebook Groups for Care Supporters and Survivors that help with these difficult experiences. Many other parents face this same reality. We are not alone.

• Learn more about heart disease