Congenital Heart Disease Awareness Week: Art’s Healing Impact on CHD Patients (Part 2)
“There’s just not enough awareness for something that’s so big.”
Earlier this week, we had the pleasure of talking with heart mom Melissa Greenberg in honor of Congenital Heart Disease Awareness Week. Her family’s story is way more common than it ought to be, and today we’re highlighting yet another. As noted in that article, congenital heart defects (CHDs) affect roughly 1% of, or 40,000, births a year. These defects range from rather benign to incredibly severe; it’s the leading cause of infant death in the United States.
As Congenital Heart Disease Awareness Week wraps up, we also had a chance to connect via Zoom with local heart mom Theresa Stewart alongside her 11-year-old son Preston. Preston was born with a condition called Shone’s Complex, a disease that affects blood flow to the heart. Theresa learned of this diagnosis when she was just 18 weeks pregnant, and Preston ultimately had his first surgery – a coarctation repair – when he was just six days old.
“He's basically got four different defects of the left side of his heart,” Theresa tells me. “He also has a membrane that's growing so it blocks some of the blood flow through the aortic valve. He has to go to the doctors every nine months.”
Photos provided by Theresa
With such frequent visits to his St. Peters based cardiologist, Preston has grown up well aware of his condition as well as his limitations. Thankfully, he does not have any real restrictions at the moment, nor is he on any long-term medications. He does, however, often deal with frequent severe anxiety attacks as a result.
“I'll get, like, super bored, and then my chest will get tight and I'll just start freaking out,” Preston says. “I'll be in math class and I'll be so bored because we're just copying down notes. And my chest will just get tight, and I'll freak out and then just ask to go to the bathroom.”
“He's always conscious of his chest feeling really feeling tight,” Theresa adds. “That's always the first thing that pops in his head: ‘is it my heart?’ And 90% of the time, we would say no. There are things that we know to look out for and sometimes it's hard for him to distinguish.”
In order to combat the anxiety, Preston has found a lot of solace in painting. It’s an interest that developed when he was little, providing him comfort and safe feelings ever since.
“When I was little I would paint, like, sunsets or dinosaurs or something,” he says. “I kind of grew out of that and didn't do art anymore; I kind of just put everything in my attic. Then, like a year later, I just wanted to do it again and I tried a sunset or something, and I realized it just didn't look good. So I changed to splatter painting because it was way more fun.”
Preston recently even did a show where he sold some of his splatter paintings. It allowed him further creativity in that he had to come up with names for them as well as his “shop”. Earlier in life, he created a sunset painting that he brought to the Ronald McDonald House along with bags of art supplies that were collected from a donation effort he helped organize at school. That painting is still hanging there today.
In addition to painting, Preston has also taken a liking to music. (“He’s a Post Malone kid,” Theresa says with a grin. They recall seeing him live at SPAC last year.) He’s taken ukulele lessons but is particularly drawn to percussion. He performs in the marching band at school and his current interest is the bell kit, which is a percussion instrument played with mallets and laid out like a piano. For Preston, music and art are the best forms of medicine to help when his anxiety is heightened, offering a true sense of healing.
“I just get distracted. They distract me. And then after I'll just be like, kind of relieved.”
It should go without saying that congenital heart defects come with their fair share of anxieties for the parents as well. And luckily, there are a number of organizations like the ones at the bottom of this article that provide a huge support system for them. Theresa is quick to praise the American Heart Association in particular.
“They do a lot of stuff for the kids. Their team has this Cardiac Kids program to help these kids get together and be like, ‘you’re not the only one; there are other kids like you.’ And I think for Preston it’s been helpful to see that. They’ve been our biggest support system, for sure.
“I used to be part of Facebook groups and stuff like that. And I'll be honest: it's really, really hard. I kind of got away from that, because it almost put me in, I don't know, a state of depression all the time. I know that sounds terrible. But I did become friends with some other moms that have had heart kiddos. We've developed relationships over the years.”
Theresa also does a lot with the organization herself to try and spread awareness to this ubiquitous disease. As an operator of Saratoga restaurant The Local for example, she has the entire staff wearing red this week and has even switched up the interior’s decor to match. As the mother of two heart kids – Preston’s seven year old sister was born with a hole in her heart – the American Heart Association is just one of a few organizations that mean the world to her and her family.
“Mended Hearts is another that I’ve contributed to. And Boston Children's Hospital is always going to be near and dear to my heart. They do some great research there, and they have some amazing doctors. That place is just… there's just nothing like it.”
Theresa’s hope is for better funded research into congenital heart defects. As the number one birth defect in the country, it’s extremely underfunded, and there aren’t a ton of fundraising efforts that the general population hears about. Sharing Preston’s story is one step towards not only raising the needed awareness for such research, but also normalizing the conditions and the kids themselves.
“A lot of people say things like, ‘oh, he looks so normal!’ Yeah – he is. He's normal. I mean, they're all normal. They’re just fighting some crazy, crazy battles that you don't see. And I really just hope someday they come up with something that, I don't know, even in utero, can help some of these kids.”
The resources below are devoted to researching congenital heart defects, each contributing – and dedicated – to making significant strides in increasing survival rates as a result.
The American Heart Association: https://www.heart.org/en/affiliates/new-york
Mended Hearts: https://mendedhearts.org/
The Children’s Heart Foundation: https://www.childrensheartfoundation.org/
CHD Coalition: https://chdcoalition.org/
