Being a mother is never easy, but when your two daughters are born with congenital heart defects (CC), the challenges – and the heartbreak – create an emotional roller coaster.
Lindsey Bartley’s first emotion was, of course, joy when she learned in 2018 that she was pregnant with her first child. This high was quickly replaced by other emotions when her daughter was diagnosed with a rare congenital heart defect.
“We discovered during an anatomical scan that Ada’s heart had basically formed upside down,” Bartley recalls. “His two ventricles were reversed, and his two arteries were also reversed.”
This complex heart defect, which affects less than 1% of all babies born with coronary artery disease, essentially allows the heart to function, but how long the heart will function without intervention is uncertain.
“With Ada, we had the option of doing surgery the right way or waiting and seeing in hopes that her heart would work for as long as possible,” Bartley says. “We chose to wait.”
Today, Ada is a thriving and feisty 3-year-old girl.
During her pregnancy with Ada, Lindsey learned that the heart defect was an abnormality, not genetic – she would not have an increased risk of future children being born with coronary heart disease. 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 wrong with your baby’s heart hit harder the second time around,” Bartley says.
The diagnosis for Audrey, born in March 2021, included not only the reversed chambers and arteries, but also four other defects, including holes in her heart and lack of blood flow in the pulmonary artery.
“Audrey’s condition was much more serious and required immediate intervention,” said Bartley, who handed her daughter over to surgeons when she was just four days old. “Audrey had a shunt at four days and an angioplasty at 6 months. She then underwent a full repair, known as a double switch, when she was 9 months old.
“Despite all these battles, she is the happiest baby on the planet and is smiling 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 that the condition was genetic and a dominant trait, meaning Bartley or her husband also had this gene. Bartley was tested and was surprised to learn that she too had a heart condition.
“Doctors discovered that I had a rhythm disorder called Wolff-Parkinson-White syndrome,” Bartley says.
This syndrome, which often goes undiagnosed until people are teenagers or older, causes a rapid heartbeat that can cause dizziness or fainting. It can be treated with a procedure called ablation.
“We would never have done a heart screening for myself if it wasn’t for my daughters,” Bartley says. “I watched my happy daughter Audrey the other day and realized she might have saved my life!”
Bartley now makes it his mission to save the lives of others. 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 thrilled to be a Woman of Impact so I can be an advocate for families of children with coronary artery disease and share vital information about women’s heart health,” says Bartley.
The Recorder features the five impactful women. You can also learn more about them at www.heart.org/indygoesred.
Rupal Thanawala is managing director of Trident Systems, a leading business and technology consulting firm, and technical writer for Indianapolis Recorder. Contact her at[email protected].