Jamala’s Essay

“Now that you know and it is something that can be rectified after birth, the fear can now be safely cast aside... maybe your son will be a well-respected pediatric heart surgeon! I hope you overcome the disappointment soon and continue to see your son as a blessing.”

When I received this message, it had not been 48 hours since receiving my baby’s diagnosis: Double Outlet Right Ventricle (DORV) with normally related greater vessels and a Ventricular Septal Defect (VSD).

After 3.5 years of fertility treatment, I was 20 weeks pregnant with our first child and we had been told that he would need open heart surgery by the time he was 6 months old. My words from our pregnancy announcement, not even a week before, suddenly seemed so prophetic: “There are still more mountains to cross. The setbacks, the detours, the disappointments have created a thing in us that is a little skeptical about the victories and keeps us constantly bracing for the next curveball.”

Congenital Heart Defect (CHD) was the next curveball. Yes, my fear now had a name, but that didn’t suddenly make the anxiety I had since the day I found out I was pregnant go away. My son was certainly a blessing however he came - the suggestion that a CHD would change that was an offensive invalidation of the reality of receiving this diagnosis.

I was still processing what this diagnosis would mean for the rest of my son’s life, and already I was being asked to make my way to acceptance. When something bad happens, there is a rush to usher the person to a silver lining, with a reminder that it could be worse, and a strategy for turning lemons into lemonade - or in this case, a baby with a heart condition into a heart surgeon.

What a feel-good story that would be! We’d all live happily ever after, skipping over the lifelong battle with his heart health. Skipping over the inevitable ups and downs of open heart surgery and recovery. Skipping over the fact that 25% of children like my baby don’t make it to their first birthday. I was disappointed, and that was okay to feel.

I was disappointed because I didn’t want my baby to start his life with a battle; I just wanted him to be carefree, happy and healthy.

I was anxious, and that was okay to feel. I was anxious for a future certain to be uncertain and challenging. With a medically fragile child, you grieve an imagined future that may never be.

I was afraid, and that was okay to feel. I was afraid because I could not protect my baby from this diagnosis, and I would not be able to help save his life.

To the parent who just received a CHD diagnosis, I just want you to know that whatever you are feeling is okay to feel.