To the Amazing Community I Never Wanted to Be a Part Of – A Parent’s Perspective on the Impact of CHD on Mental Health

Congenital heart disease is never just about the heart. CHD has a real, often invisible impact on all aspects of life and health for patients and families, especially when it comes to mental health. It may feel like you’re the only one experiencing the mental health impacts of CHD, but as this open letter to the CHD community from a parent of a patient with CHD shows, you’re not.

To the amazing community I never wanted to be a part of,

My life, like many of yours, can be divided into B.D. (before diagnosis) and A.D. (after diagnosis). I remember everything about the day my child was diagnosed with a severe congenital heart defect. Vividly. I can tell you what I wore, where we were sitting in the exam room when the doctor came in, the words she said before the seven words that would change our lives: “There’s something wrong with your baby’s heart.” The sights, sounds, and smells are etched permanently in my memory. The time following the diagnosis is no different with countless events, ranging from wonderful to deeply traumatic, forever imprinted on me. 

In the weeks, months, and years to follow my child’s diagnosis, I experienced just about every feeling in the book. My family experienced some of our highest highs and some of our absolute lowest lows. While we were prepared for the course our child’s care would take, expecting the surgeries and hospital stays, we weren’t prepared for the rollercoaster of emotions and the very real repercussions on our mental health. We experienced a wealth of thoughts and feelings, especially in the early days, which at times felt foreign and unexpected. While we had a number of meetings with our care team leading up to the birth and during the subsequent treatment of our child to discuss care options; we felt wildly unprepared for the impact to our mental health, or our child’s, or how to deal with it.

As a mom to a child with CHD, I have experienced immense anxiety – for open heart surgeries and procedures, leading up to routine doctor’s appointments, on random Sunday afternoons watching my child play but with my mind racing to all the future “what-ifs”. I have experienced anger and sadness, and at times, depression at how unfair all of this can be. I have experienced extensive trauma and watched my child endure the unthinkable many times over, wishing with my whole being I could switch places with them.  It comes and goes, seemingly at random, and sometimes hitting at unexpected times. I’ve also seen my child begin to struggle with anxiety, anger, and so much of the trauma they’ve already experienced in their short life.

These are just some of things all of us in the CHD community experience, but rarely speak about. In the time since the day my world changed with my child’s diagnosis, I’ve come to realize a few things. Things I wished I’d realized and accepted sooner, so I am sharing them with you now in the hopes we can all break the silence about the connection between CHD and mental health. 

You grieve your life before the diagnosis, and the child you thought you’d have as a parent or the life you thought you’d live as a patient, and that’s okay. 

Sometimes simple things, seemingly unrelated things, can feel like a trigger to you, and that’s okay. 

You will have days where you are angry or sad for your child or yourself, and that’s okay. 

You will have days where you are filled with joy and marvel at the “small things” (which we all know are really the big things), and that’s okay too. 

Your anxiety, your sadness, your trauma is real and that’s okay. You don’t have to be strong and “together” every day. 

You see, there’s a secret to CHD. CHD comes with a lot of complexity, both expected and unexpected, but it also comes with something else. CHD comes with a community that you never, ever imagined or wanted to be a part of, but once you’re here, there’s no other community you’d rather have at your side. 

Individually, but also as a community, we’ve experienced sadness, grief, and unimaginable trauma. We’ve celebrated milestones we thought would never come, while grieving the ones that never did. We’ve been through something no one else in this world has been through.

In that collective experience, there is power. There is connection. And perhaps most importantly, there is understanding without any explanation needed, from someone else who’s been there. 

When I look at our community, I see quiet strength. I see fierce resilience. I see a resolve to support one another in the hard times and lift each other in the good ones. I see a community that overcomes everything thrown its way – together – including the mental health challenges that come along with a CHD diagnosis. I see a remarkable, unique, and tight knit community I never wanted to be a part of, but now that I’m here, I’d never want to be anywhere else. 

Whether you are a parent, a patient, a care team member, CHD has very real and lifelong impacts on your mental health. It is okay. You are okay. You are not alone. Together, as the amazing community we are, we can make the invisible impact of CHD visible. We can talk about our struggles and successes in the open and out loud, without judgment. Mental health is health. Our mental health matters.