Remembering a Heart Warrior: Aaron’s Love, Legacy and Life with CHD
Every child with congenital heart disease is more than a diagnosis—they are exquisitely unique little personalities, siblings, friends and deeply loved members of families who carry their stories forward. For Danielle and her family, Remembering Our Heart Warriors Day is a time to celebrate the life of her son, Aaron, whose 13 months on earth left a lasting imprint on everyone who met him. Born with a complex CHD, Aaron faced steep medical challenges from the start, but his family chooses to remember first his way of expressing himself, his “sassy britches” attitude and the joy he brought into every room. Through giving themselves grace on hard days, remembering Aaron in intentional ways along with advocacy and community, his family honors Aaron’s legacy while supporting other heart families walking similar paths, proving that heart warriors change lives far beyond their time here.
When Danielle and Drew’s third child was diagnosed before birth with Atrioventricular Septal Defect (AVSD) with unbalanced canal defect, they were not completely unfamiliar with CHD. Their oldest child was born with a small hole in her heart, but Aaron’s defect turned out to be more complicated. He spent 123 days of his 13 months of life at Children’s Healthcare of Atlanta hospitals. Although their time with Aaron was short, his family remembers well all the joy he brought them.
“We got one giggle out of him in 13 months, which we got on video,” Danielle said. “He generally had a very happy disposition. He loved being with people. He’d get mad when we had to go home from church, where he was always the center of attention. I teased him he couldn’t sweet talk everyone, all the time! Heart kids are so strong and feisty.”
Aaron’s older sister and brother loved to read to him, help with his exercises and therapies and play with toys together on the floor. Danielle said Aaron expressed what he wanted clearly including giving a strong “side eye,” regularly making his respiratory therapists smile. Even now, his siblings are curious and unafraid of people with medical devices they recognize like oxygen tanks or feeding tubes. They’re always eager to help and reassure other kids that it’s okay to see these things because their brother Aaron had them too.
Danielle said it’s important to all of them to talk about Aaron openly and remember him often. The kids are always on the lookout for matchbox cars painted orange, Aaron’s favorite color. On his birthday and the anniversary of his death, they take the cars to the cemetery and talk about their little brother. They have a birthday party for him, and they love to see pictures and hear other people talk about him. In the grieving process, Danielle lets the kids lead the way, and she intentionally leaves room and slows down on days when anyone’s just sad or having a tough time. She processes her own grief through writing and leaning into supportive community.
“I find comfort in being with people who let me talk about him and even be upset if that’s where I am that day,” Danielle said. “I’m not stuck in grief though. I’m a mom who wants to walk through it, but I’m also still living my normal life. When someone shares a picture or story about him that I didn’t know or hadn’t seen before, it means he’s not gone out of people’s memories. That encourages me.”
One of Danielle’s favorite memories of her son is going to the Atlanta Zoo with a neighbor and her children, one of whom had an NG tube like Aaron. Two moms and five children, age 6 and under, ventured through the zoo, fascinated by the animals and the colors. Aaron rode the train with his big sister. The women declared they had “Tubie Mom Power,” and they now know a third neighbor whose child had a feeding tube.
“Three in the same neighborhood is so rare!” Danielle said. “We share a unique understanding of these therapies, and we tell each other that we’ll work through this together.”
Being part of a community of people walking through similar journeys helps in so many ways. Danielle is involved with Kate’s Club, a community for children and teens, their families, and young adults who experienced the death of someone close to them, and the Kids at Heart program at Children’s. She said it gives her joy to cheer on other families as their kids navigate CHD. She also advocates for CHD kids at the Georgia State Capitol, as well as for people who are blind or visually impaired, like her mom. Two years ago, she took Aaron to the Capitol with her on Advocacy Day. She wanted legislators to have a face—a very cute one!—to go with the information they would be learning about congenital heart disease later that day.
Aaron is part of everything she does.
Danielle is expecting again in May, and she and her husband are brainstorming ways they can include Aaron in the birth announcement. The baby has a small Ventricular Septal Defect (VSD) like her oldest child and an intramuscular VSD. Danielle will be entering the heart warrior family once again.
“Congenital heart disease affects everyone, not just the heart warrior and his parents,” Danielle said. “It affects siblings, aunts and uncles and grandparents. Everyone who loves that child will need to develop an understanding of the family’s needs and shift their expectations. Be gracious with one another and remember we’re all learning together.”
Related:
Grief Companions: Supporting Families Through Child Loss
Kids at Heart Connects Families Who “Get It”
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