Being a mom is never easy, but when both of your daughters are born with congenital heart defects (CHDs) the challenges – and the heartbreak – create an emotional rollercoaster.
Lindsey Bartley’s first emotion, of course, was joy when she learned in 2018 that she was pregnant with her first child. That high was soon replaced with other emotions when her daughter was diagnosed with a rare congenital heart defect.
“We found out during an anatomy scan that Ada’s heart had essentially formed backward,” Bartley recalls. “Both of her ventricles were reversed, and both of her arteries were reversed, too.”
This complex heart defect, which affects less than 1 percent of all babies born with CHDs, essentially allows the heart to function, however the length of time which the heart will function without intervention is uncertain.
“With Ada, we were given the option to surgically intervene right way or to wait and see in hope of her heart functioning for as long as possible,” Bartley says. “We chose to wait.”
Today, Ada is a thriving, feisty 3-year-old.
During her pregnancy with Ada, Lindsey was told that the heart defect was an anomaly and not genetic – she wouldn’t have an increased risk of future children being born with a CHD. Unfortunately, that turned out not to be the case. A fetal echocardiogram during Lindsey’s second pregnancy 18 months later detected the same condition – only worse.
“The nightmare of hearing something is wrong with your baby’s heart hit harder the second time,” Bartley says.
The diagnosis for Audrey, who was born in March 2021, included not only the reversed chambers and arteries but also four other defects that included holes in her heart and a lack of blood flow through the pulmonary artery.
“Audrey’s condition was much more serious and required immediate intervention,” says Bartley, who turned her daughter over to surgeons when she was just four days old. “Audrey had a shunt placed at four days and an angioplasty at 6 months. She then had a full repair done, known as a double switch, when she was 9 months old.
“Despite all of these battles, she is the happiest baby on the planet and smiles through it all.”
After two babies born with the same CHD, Bartley wondered again if the condition was genetic. A genetic screening of Audrey’s cord blood confirmed the condition was genetic and a dominant trait, meaning either Bartley or her husband also had this gene. Bartley got tested and was surprised to learn that she, too, has a heart problem.
“Doctors found that I have an arrhythmia disorder called Wolff-Parkinson-White syndrome,” Bartley says.
That syndrome, which often goes undiagnosed until people are in their teens or older, causes a rapid heartbeat that can cause lightheadedness or fainting. It can be treated by a procedure called ablation.
“We would have never proceeded with any heart screening for myself if it weren’t for my daughters,” Bartley says. “I looked at my happy girl Audrey the other day and realized that she may have saved my life!”
Bartley is now making it her mission to save others’ lives. She recently joined the American Heart Association in Indianapolis as one of its five 2022 Women of Impact, a group of women raising awareness about heart disease and stroke.
“I’m excited about being a Woman of Impact so I can advocate for families of children with CHDs and to share life-saving information about women’s heart health,” Bartley says.
The Recorder is profiling all five of the Women of Impact. You can also learn more about them at www.heart.org/indygoesred.
Rupal Thanawala is managing director at Trident Systems, a leading business and technology consulting practice, and tech editor for Indianapolis Recorder. Contact her at email@example.com.