Jamie and Jackson's CHD Story

After learning of her son’s congenital heart defects, mother says her grief turned to strength, while medical challenges knit her family more tightly together.

After Jamie Dawson and her husband, Layne, found out, 18 weeks into her pregnancy, that their son Jackson had not one but four heart anomalies, she went into their bedroom, climbed under the covers and cried for three days.

“I knew he’d have a shorter life expectancy,” said Dawson, who lives in Somerville, Tennessee. “I knew he’d have to have open-heart surgery, and even with that there is no cure.”

So she cried and cried. She also prayed. And on the third day, just when she had told God she wasn’t strong enough to handle a baby with heart troubles, something happened that changed her outlook: She felt Jackson kick her for the first time.

“In that moment,” said Dawson, “I was a phoenix rising up. I knew God would give me the strength to do whatever I had to do. My focus completely changed.”

That doesn’t mean everything became easy. Far from it. After she gave birth, she was only able to touch her baby’s tiny feet before he was whisked away to a hospital better equipped to handle his first surgery. Once Jackson was finally home, his low oxygen levels necessitated trips to the emergency room and overnight stays in the neonatal intensive care unit.

That first year of his life, Dawson blamed herself for Jackson’s congenital heart defects, apologizing to her husband every day — as if having a baby with a heart defect was her fault.

“Of course he never once made me feel that way,” she said. “It was all me blaming myself. I was even thinking that his parents probably wish he had married someone else who could give them a healthy grandchild.”

It was, she said, “a very dark place.”

That was nine years, three heart surgeries, the birth of a heart-healthy son — plus countless spirit dips and surges — ago. Jackson is now in third grade; his heart functions, at best, around 60%. In addition to his heart abnormalities, he has developed ADHD, anxiety and depression, which is common for youngsters with congenital heart disease.

He also was recently diagnosed with cirrhosis of the liver, which began when his heart wasn’t able to pump enough oxygenated blood to his organs. He now sees a hepatologist as well as a cardiologist.

“We were in a honeymoon period after his first three surgeries,” Dawson said. “Now that he’s older, we’ll start seeing issues come around. Different types of medical interventions might be necessary.”

In May Jackson’s cardiologist told him that could wait a year before having another appointment. However, in October he began developing chest pains at school prompting another appointment sooner than they had hoped.”

“They thought it might be a sign of developing arrhythmia,” Dawson said. “He’s now wearing a heart monitor for 30 days. If he feels dizzy or has chest pains or feels like his heart is beating too fast, he knows to record what’s happening.”

Such setbacks make it even harder to not coddle Jackson, she said, acknowledging that she has to let him stand on his own. 

“He’s 9 years old. I have to let him grow. His cardiologist said, ‘We did not put him through three surgeries for him to not get to live his life.’”

Jackson is a smart little boy, and his family keeps him in the loop of everything going on inside his body. His mom has told him over and again, “If you feel like anything is off, you come to me. It may be nothing; it may be something. I’m trusting you. We’ll work through this together.”

Together is how, more than ever since Jackson’s birth, the family — grandparents, aunts, uncles, cousins and, for the last six years, a little brother named Cooper — deals with everything. Cooper was a surprise baby, Dawson said. Her husband didn’t want Jackson to be an only child, but she was understandably apprehensive about having another baby.

“I spent the entire pregnancy completely afraid,” she said. “When I went for the anatomy test, where we found out about Jackson’s heart, they didn’t look at the baby’s heart. They sent me straight to a pediatric cardiologist.”

Tests showed an abnormality — not nearly as serious as those of his brother, but an initial cause for concern. Once Cooper was born, though, and had an echocardiogram, his heart was pronounced healthy. 

The brothers, she said, “are best friends.” 

For that, and for so much more, she feels blessed and is grateful. 

“My husband and I have been married 12 years, and Jackson brought us closer together even more than if he had been born healthy,” Dawson said. “We went to war (against Jackson’s heart disease) and came out on the other side. Something like this can drive other couples apart, but we love spending quality time together.”

They are realistic about their elder son’s future: a lifespan decades shorter than those of his classmates and peers. New health issues that may arise and old ones that won’t get better. Yet she and Layne are optimistic that research into congenital heart defects will lead to longer lives and better outcomes.

“That’s why I do what I do, why I give talks to raise awareness,” she said. “When the American Heart Association asked me to tell his story, I was not a public speaker at all. But I’ve found that by doing so, I didn’t feel so helpless anymore. I’m doing something to make his life better. Any time they need me, I will move heaven and earth to be there.”

Like most women, Dawson wears a lot of labels. She’s a wife, a mother, a daughter, a sister, a friend. Most of them, she expected. But not all. 

“The one I never thought I’d have,” she said, “is the one I’m most proud of: heart mom.”