Turning a broken heart into hope
Moms launch foundation to support children with congenital heart defects and their families
Brittany Behenna Griffith’s heart broke as her newborn’s heart went silent. For about 17 weeks leading up to her first child’s birth, Griffith and her husband, Brady, had survived on the hope that Liam would beat the odds after doctors diagnosed him with a birth defect in his heart. The condition is the leading cause of birth defect-associated illness and death.
Although the Griffiths live in Santa Fe, they changed doctors and traveled to Albuquerque for more specialized care. They researched the constantly changing diagnoses as they neared the due date. Week after week, they offered prayers for their son. He never even saw his nursery. Liam was born with four congenital heart defects, which meant his hole-filled heart was “piped wrong” — unable to support his body like it should. When Griffith was told halfway through her pregnancy that her son would need surgeries not long after he opened his eyes, she cried.
A little past midnight on May 17, 2015, Liam entered the world. Griffith barely had time to say hello before he was whisked away.
Eight hours after delivery a surgeon tried to repair his heart. Seven hours later, the doctor told Griffith and her husband that Liam wouldn’t make it
through the night and invited them to hold their firstborn for the last time. Liam died 21 hours after his birth.
In the wake of her grief, Griffith helped start Lexiam Heart Foundation, a nonprofit that aims to provide support and education on a condition affecting 1 percent of American births — 40,000 infants each year — according to the Centers for Disease Control and Prevention.
“I was very lost; it was a scary time,” Griffith said. “But if I can make it a little easier for other moms, then his life had purpose.”
While cystic fibrosis occurs in 1 in 3,000 live births and childhood cancer is diagnosed in 1 in 6,250 children and teens, congenital heart defects occur in 1 in 110 births, according to the Congenital Heart Public Health Consortium.
Despite these numbers, Griffith said congenital heart defects were a foreign concept when Liam was diagnosed.
“We didn’t even have a definitive answer of what to expect,” Griffith said. “I mean, it was completely unknown.”
Lexiam Heart Foundation started in February, hoping to provide more accessible information and support on
congenital heart defects in a state where there is only one certified center dedicated to the issue.
On June 30, the nonprofit is hosting a launch party in Albuquerque in order to raise awareness of a condition affecting more children than cancer.
“Walking through this process, it’s big and scary,” Griffith said. “We want those, especially in rural New Mexico, to feel like they have a support system.”
Leslee Schneider, Lexiam’s other co-founder, said while rare, congenital heart defects weren’t brought up around her in the same way other birth and childhood issues were that may be even rarer.
“I didn’t know anything about heart defects until I had a kid with heart defects,” said Schneider. “It feels like our kids don’t matter. Of course cancer is horrible, and I wouldn’t wish it upon anybody, but what about our kids?”
Lexiam is named after Schneider’s daughter, Lexi, and Griffith’s son, Liam. Lexi is 4 years old and living with an underdeveloped left side of her heart. In order to give birth and have the specialized care Lexi would need, Schneider had to travel to Denver for treatment at Children’s Hospital of Colorado. Lexi has survived blood clots, fluid in her lungs and other complications, and continues to get care through Presbyterian Hospital in Albuquerque. She travels to Denver for surgeries.
“I’ve tried to not be overly optimistic because — this sounds horrible, but I could outlive her,” Schneider said. “We just do the best we can with how long we have her.”
According to the CDC, congenital heart defects affect 2 million people in the United States, and the condition causes 4.2 percent of all neonatal deaths. About 75 percent of babies born with a critical congenital heart defect are expected to survive to age 1, with about 69 percent expected to survive to 18.
Dr. Warren Laskey, the cardiology division chief at the University of New Mexico Health Science Center, said there is far more hope for people with congenital heart defects than a couple of decades ago.
“Survival has been enhanced by many, many fold,” Laskey said. “Some do have normal life expectancy, but there are horrendous, very complicated and ‘unfixable’ cases.”
He said that while there is no explanation about why heart defects occur, it’s important for parents to be aware they happen.
“People just need to be aware of it long before it affects them personally,” Laskey said later. “We can use some help, certainly there needs to be more willingness and awareness in the practicing community.”
Both Griffith and Schneider have since given birth to other children without heart defects, but they went through their pregnancies terrified for their babies’ hearts.
“That naiveté that you have is gone,” Griffith said. “It was even scarier with her because we knew the worst.”
Griffith’s nearly 2-year-old daughter, Clara, will grow up without an older brother, but with the knowledge of him as her family celebrates Liam’s Day every May 17 in honor of his life.
“Our grief is still very much with us every day,” Griffith said. “We never forget and to hear others acknowledge him is great.”