Six weeks after her birth, Gayla Smith’s parents were told that she wouldn’t live too far past her second birthday.
Forty-five years later, Smith serves as a defier of odds, despite her congenital heart defect that makes it increasingly difficult to do so.
Smith was one of 40,000 individuals born each year with a congenital heart defect, which affects the breathing, stamina and blood circulation of those diagnosed. According to the Mended Hearts organization, over 85 percent of babies live to at least the age of 18.
However, children born with more severe forms of CHD are less likely to reach adulthood. The 45-year-old Smith and 49-year-old Mike Warren described themselves as anomalies compared to others with CHD.
“We’re so in uncharted territory,” Smith remarked. “We’re way on the outskirts of what to expect. You don’t know what’s going to happen.”
THE FIRST DIAGNOSIS
Like most others who live with the defect, Warren was diagnosed with CHD at birth. Warren stated that he was born "a blue baby."
“At 11 or 13 days, they went into surgery," Warren explained. "I still have this big scar around my back.”
Others, however, are sometimes diagnosed before they’re even born. For Chase Schaefer, for instance, his mother, Stephanie, was 20 weeks pregnant when she went in for an ultrasound, only to learn of his diagnosis.
Stephanie said she was initially elated to find out the gender. But when the sonographer returned with the results, the next words out of her mouth took Stephanie back.
“Her face went blank, and she said, 'There's something wrong with the baby's heart,’” Stephanie recalled. “From that point on, my entire pregnancy was filled with in-depth ultrasounds and specialists visits, trying to decipher what exactly we're dealing with.”
She said when Chase was born, it took 26 echo-cardiographs to diagnose him with CHD. Stephanie disclosed Chase had his first open-heart surgery when he was just 10 days old.
Smith, meanwhile, wasn’t diagnosed until she was six weeks old.
“I was this monster baby,” she explained. “I weighed almost nine pounds. But by the time I was six weeks old, I had just lost all of my weight. That was how my mom knew something was wrong.”
The doctors eventually informed her parents that she wouldn’t make it to the age of two. And even if she did, life would be difficult for Smith.
“They had told my parents 'she will never walk,'” Smith said. “She will never talk. She will be mentally challenged. She’ll never be a functioning person for as long as her short life span is.”
Smith beat those odds. So did Warren and, for a time, so did Chase. Stephanie said he was given a five percent chance to make it to his first birthday.
He lived to be four and a half years old before his passing in May 2016.
“He was and is my miracle,” Stephanie expressed. “He beat the odds left and right. My heart warrior.”
LIFE WITH CHD
Although Smith lived past the age of two, she said life was still tricky living with CHD. Even at an early age, she knew she was different from other kids.
“We don’t know what ‘normal’ is,” Smith stated. “I can still remember going up to Children’s Hospital. I remember going to see the doctor, sitting in the waiting room. It was so normal, seeing the other kids that were sick and going to the hospital and having procedures like me.”
Warren said he felt just as alienated living with his condition. He said before his first big surgery at five years old, Warren remembered walking down the long driveway at his house.
He said that he could walk about halfway through that driveway without having to catch his breath.
“I can remember knowing I was different – because I was always treated differently,” he stated. “They said I could exercise on my own as much as I wanted until I felt tired. But my doctor was always afraid that I would push myself too hard to try and keep up.”
Warren said he always had to adapt to his environments like a chameleon to fit in with other kids who played at his age.
“I can’t run worth squat,” Warren recalled. “As a kid when you’re playing chase or tag, you learn how to climb things in order to get away from people instead of having to run, or hide better than having to run from people.”
Even in adulthood, Warren would have to continue to adapt, recalling that lifting heavy objects when he worked in infrastructure technology was a particular challenge.
“I would have to work out a way to lift these heavy objects without it massively affecting me,” he recalled. “I would find workarounds, basically either utilizing a fulcrum or something like that to lift something, so it was less heavy.”
When Smith was 28, she did something that her doctors strongly advised against – she had a baby. Smith said doctors classified her child as a “high-risk pregnancy” thanks to her CHD.
“I was actually told ‘Don’t get pregnant – you’ll die,’” she recalled. “That was their literal words out of their mouth.”
Smith recalled doctors actually recommending that she terminate the pregnancy. But it went against everything Smith believed, so she went through the pregnancy against her doctor's medical advice.
She went into heart failure as she went into labor, but when it was all said and done, she had a beautiful one pound and 15-ounce baby after 28 weeks of pregnancy.
Smith said they were scanning her son frantically to be sure he had no heart defects they could detect. She was relieved to find out that all four of his pumping chambers were working correctly.
“You don’t want them to experience what you did,” Smith expressed.
CONTINUING TO BEAT THE ODDS
Today, Smith is a stay-at-home mom and Warren is a teacher at Waxahachie Global High School. With Smith awaiting a heart transplant and Warren continuing to monitor his condition, they expressed that they live each day one at a time, grateful that they continue to beat the odds.
However, the reality of their conditions continues to set in day after day. Smith and Warren are both a part of another support group several years ago before they met up again in Waxahachie.
She said only three members are still alive today — including Smith and Warren, who were among the oldest of the original group.
Warren said he never used to really think about the possibility of dying so suddenly. That is, not until he had his two kids.
“When you grow up thinking that you won’t ever make it to retirement or anything like that, you tend to be a little more reckless,” Warren expressed. “After having kids, there’s not a day that I don’t worry about something happening. Every day, it passes my mind. Most people don’t understand that.”
Smith expressed a similar emotion, stating she always wonders if there’s going to be a moment where she doesn’t shake things off.
“As a CHD person, your body finds a way to compensate a lot of times, because it’s never been quite normal,” Smith said. “When you’re a teenager or young adult, it’s easier to brush off. When I got my son sitting at home going ‘Mom, are you okay? You don’t look quite right? Do we need to take you to the hospital?’ It’s a little harder to brush off.”
Nowadays, Smith and Warren are part of a support group aiming to help residents who struggle with CHD as they do. Smith stated that for a disease as common as CHD, the resources to address them are surprisingly low. She estimated that about 123 adult congenital cardiologists live in the country.
In Texas, the closest ones are in Dallas and Fort Worth; several miles from Ellis County.
“If you’re in a rural area, you’re not getting the care," she stated. "There’s no one to serve them. There’s no one to take care of these people. People aren’t aware of that.”
To bring attention to CHD, the advocacy group received a proclamation from the Waxahachie City Council, which was announced during the council's meeting this past week.
The council declared February as “Congenital Heart Defect Awareness” month.
Smith said they hope to draw attention to the thousands of families who are affected by CHD year after year, advocating for early detection in infants and better childhood screenings.
In memorial of her son, Stephanie started her advocacy of "Chase Life," and she affectionately named it after her late son.
“He made such an impact on so many lives, even with just a picture of his smile on Facebook,” Stephanie expressed. “Now and forever because of my son, I advocate for children like Chase until there is a cure for CHD."
Smith said she’s proof that CHD can be managed — and she hopes to help others learn how to do it as she did.
“Life is short,” she expressed. “And I’ll claim every year - because I was only supposed to get two.”
To learn more about the Chase Life organization, go online at www.chaselife.org. To see how you can help others who have CHD, go online at www.achaheart.org.