What I Wish People Knew…
Congenital heart disease is the most common birth defect in the United States and worldwide. Oftentimes, children and adults with CHD wish those around them knew more…
CHD is the most common birth defect worldwide, however, most of the general public has never heard of congenital heart disease. We recently asked some of our community members “What do you wish people knew about your heart?” or “What do you wish people knew about your CHD?” These are just a few of the responses we received…
“I strong!” (Hugh, Age 2)
“That I love you!” (Ollie, Age 4)
“That I require a battery pack (pacemaker) so I can keep up with my friends.” (Clark, Age 6)
“When you have CHD, part of your heart is broken and it will never be perfect but that’s okay because nobody’s perfect!” (Barrett, Age 7)
“Well… maybe. That’s special and it makes me special.” (Jacob, Age 7)
“That it’s not fun and it’s painful and scary.” (Michael, Age 10)
“I would want them to know what it feels like.” (Brady, Age 11)
“Just because you don’t see my scars doesn’t mean they aren’t there. It’s hard trying to be strong all the time just so people don’t think I’m scared about my future.” (Greta, Age 14)
“I wish people knew that you don’t have to look a certain way on the outside to be validated that you have a struggle going on with your health. I also wish they knew that there are no cures, just treatments, and everything is to help us stay stable, not heal us, no matter how good we may look.” (Isabella, Age 17)
“I wish people knew that while my dad fought an immense battle, he didn’t lose his battle, he simply just didn’t have the strength to fight himself so he transitioned his fight to his family. He is and will always be strong and a fighter to me, and his fight isn’t over, I have started the fight for him alongside my own CHD fight.” (Isabella, Age 17 – in honor of her dad, gone too soon with CHD)
“That it never ends and even though we look like we are healthy, our hearts are always working hard and we never know when we might need another medication, procedure or surgery.” (Dakota, Age 19, and Brody, Age 17)
“I wish people knew that it isn’t all “sunshine and rainbows” living with CHD takes a toll on you mentally, physically and even sometimes spiritually. CHD has shown me so much and has also given me a run for my money but I continue to live. I’ve had moments where I just wanted to completely give up, but I stop and think about what I wanna do with my life and I have to remain strong.” (Nala, Age 21)
“Just because we look fine most of the time, doesn’t mean we are.” (Daniel, Age 26)
“I’m able to do the same things as everyday people even though I’ve had heart surgeries. My CHD doesn’t limit me. But this is an incurable disease that I have lived with and will live with my entire life. Even if I play it cool, it’s a very persistent worry in my mind.” (Cara, Age 29)
“I wish people understood that even between procedures the logistics alone is like a part-time job. Planning and scheduling appointments, fighting with insurance companies on coverage, getting your prescriptions filled with accurate healthcare coverage. It’s a never-ending scavenger hunt where the goal is to not die or pay through the roof for procedures and care. It takes a toll mentally, leaving you at the very least brain tired a lot of the time. Also, you are not fixed because of your procedures. The doctors simply pieced together your heart to work correctly, so your physical power is still not 100%. My Oxygen is around 90% most of the time and I have a single ventricle heart where one ventricle is basically doing the work of two. The last thing is to enjoy the little things and cherish time with loved friends and family.” (Scott, Age 34)
“That learning disabilities are common with the diagnosis.” (David, Age 38)
“I wish people knew it existed. That it is not over after surgery, that it is not just for kids.” (Jennifer, Age 40)
“That it’s never fixed and it’s a lifelong condition. And as I get older I will start to slow down. But that doesn’t mean I want to.” (Kristy, Age 40)
“I wish people knew that although you can have surgeries as a child to address some heart defects, we still require lifelong care. It doesn’t go away. And the challenges adults with CHD face are ever-changing as they age.” (Cara B, Age 42)
“Just because we look 100 % healthy, we are not. As a patient and a parent, I worry every day, especially in light of the pandemic and the unknown.” (Michelle, Age 43, and Brody, Age 3)
“It’s an ongoing illness without a cure.” (Dipti, Age 46)
“My CHD is part of who I am today but does not define me. I am so much more than just a CHD patient. Don’t let it hold you back.” (Michelle B., Age 51)
*Some responses have been edited for typos or for clarity.