by A lot of people ask us what the life expectancy is for AJ. It’s a weird question to be asked, and the truth is that we really don’t know. Technically he’s outlived the predictions of many doctors already, but at the end of the day, none of us know how long we have.
There are statistics and average ages that people with various heart conditions have lived to, but honestly, those aren’t truly accurate anymore, and that’s a good thing!
Medical advances have been huge for CHDs in the past decade. Previously babies with CHDs were considered “doomed,” but today there are now more adults living with CHDs than there are children. Studies can’t keep up with the rate of change.
This is one of the most well known articles referencing CHD advances. From the 1940’s, it references “replumbing” the heart, which is how I often explain AJ’s heart procedures to others. Although the boy mentioned in the article, Michael Schirmer, had a different heart defect than AJ, the BT Shunt procedure he had was part of AJ’s first open heart surgery as well. The image will enlarge so you can read the article in its entirety.
Michael Schirmer (the boy from the article) passed away in 2014, living into his 70’s and raising two children. Before the Blalock-Taussig shunt, children with his heart condition weren’t typically expected to reach their teens, much less adulthood.
Many adults with CHDs now graciously share their stories publicly. These stories provide an immense amount of hope for parents with a new CHD diagnosis as well as proving a source of inspiration for children to look up to. They also provide an incredible amount of insight into what life with a CHD is truly like.
In honor of CHD week and the amazingness of today’s fact, I wanted to share links to some of the CHD adults that I follow.
Stephanie Romer (HLHS) founded CHD Legacy. As one of the oldest living adults with HLHS, Stephanie advocates for the CHD community as a whole and shares her experiences via writing, speaking and coaching.
Meghan Roswick (HLHS) is very physically active and was a competitive gymnast and free-style skier. She’s shares her journey, covering everything from leg pains and travel, to exercise and options for having a baby when you have a heart defect.
Matt Krajnaik (HRHS) is a MMA coach who is getting ready to step into the ring for the first time this month. He’s honest about his journey with exercise and fitness and is an inspiration to many parents and kids when it comes to physical capabilities with half of a heart.
Meagan Houpt (HLHS, TGA, VSD) shares her journey and advocates on Facebook as well. The three stage palliative surgeries were considered experimental at the time she had them, 30 years ago. Meagan speaks publicly about life with a heart defect and isn’t afraid to broach topics such as medical ptsd and anxiety.
Do you know other adult CHD advocates that you would recommend following? If so, please share them and help spread awareness!
