More than 400 children in the United States need heart transplants every year, and those medical procedures can place a great deal of emotional and financial stress on the families of these children.
However, there is a non-profit organization that serves to relieve some of that stress by providing support to families while also funding innovative research aimed at improving the lives of children living with transplanted hearts. That organization is Enduring Hearts.
The Dallas Express recently interviewed Enduring Hearts CEO Carolyn Salvador, along with Christy Sturm, a mother who received support from the organization after her son underwent a heart transplant.
“We were founded [in 2013] by a family that thought they had two healthy children, [but] their youngest child went into heart failure in the most magical place on earth during a family vacation at Disney,” said Salvador. “She started getting shortness of breath, and Mom convinced Dad to take her to a hospital in Orlando.”
The family was told their two-year-old daughter needed a heart transplant if she was going to survive.
“As you’d imagine, their world was flipped completely upside-down,” said Salvador. “And at that point in time, a heart transplant lasted on average around nine years,” which for a two-year-old child is far from a full life.
She said the parents looked around and realized, “There was no other organization driving the critical research to help a heart transplant become a lasting cure.”
“While they were waiting for their daughter Maya’s precious gift, they created Enduring Hearts with the mission not just to fund research here at Children’s Healthcare Atlanta but to fund it all over and be able to seek out the best and brightest researchers to truly make that gift last a lifetime,” Salvador continued. “Since [our] inception, we have funded over $10 million worth of research.”
She told The Dallas Express that researchers from all over the world send Enduring Hearts their proposals. “We [have] funded over 58 different studies, and we’re actually looking at three different ones right now,” she said.
Salvador said the organization has a Scientific Advisory Committee (SAC) that assesses every proposed grant through a thorough scientific analysis and examines whether it meets Enduring Hearts’ priorities and whether it has the potential “to make the biggest impact for helping children live longer, healthier lives.”
“Each time, it’s a really rigorous process,” she continued. Salvador said because Enduring Hearts is funded entirely through private donations, “we make sure that we are really using [that] money to fund studies that can really make an impact.”
“We have funded $2 million worth of new research this year alone,” she continued, adding that they funded their first study of $35,000 in 2014, emphasizing how much the organization has grown.
“Our typical grant size is around $150,000 or so, which is great for a two-year project at an institution to generate new ideas and a body of research so those researchers can go out and try to get bigger grants like $1-3 million,” she said.
Salvador told The Dallas Express there was one investigator whose project earned a $250,000 grant from Enduring Hearts in 2016-17, and that investigator has now “gone on to make a really big breakthrough using blood biomarkers.
“Science is incremental, so we’re really measuring how many of our researchers are moving on and [how many of] their studies are moving on,” she said. “We just heard from a researcher at Vanderbilt [who] was just able to get a 3.3 million NIH grant.”
Salvador said one of the early studies Enduring Hearts funded “determined that roughly 40-50% of families are in some state of PTSD after their child had a transplant … so we decided to start a branch doing some family programs to help try to alleviate some stressors for a family.”
“It’s expensive,” she continued. “A transplant is close to one million dollars. A lot of that is covered by insurance, but there’s still an ongoing cost to be able to get your child back and forth [between] the transplant center [and] the hospital.”
To address these costs, Enduring Hearts developed the Road to Recovery Gas Card program to relieve the burden placed on families by the now-rising cost of fuel.
“We make those eligible to any family regardless of income because we know that travel is a lot,” Salvador told The Dallas Express, adding that families can be eligible for up to four gas cards per year.
Enduring Hearts also has the Feed the Heart program, which offers families a $100 grocery card. The cards are available to families of all income brackets, and starting in 2023, families will be eligible for up to four grocery cards per year.
One family who received a lot of assistance from Enduring Hearts is the Sturm family. The Dallas Express spoke with Christy Sturm, who said she and her husband learned their son Iver had a heart condition when she was only 20 weeks into her pregnancy.
“The first diagnosis we got was heterotaxy syndrome,” she said. Heterotaxy syndrome is a rare condition in which organs develop abnormally. In this case, that organ was Iver’s heart.
Christy and her husband came from their home in Montana to Texas, where they have family, and pursued treatment at Children’s Medical of Dallas.
“I was there about a month before I had Iver,” she said. “I wasn’t able to hold him. They shipped him off to the children’s hospital right after, and I had to have an emergency C-section, so I didn’t get to see him until two days later.”
Iver was born on November 11, 2020, and the following February, he was put on the list to receive a heart transplant.
“We waited about 50 days,” Christy said. “April 7th was when we got the call, and he had his transplant on April 8th.”
“They wanted us to stay in Dallas three months post-transplant just because you’re still getting blood work every week, [and] you’re getting an echo every two weeks,” she continued. “They want to make sure the anti-rejection levels are good and … the function of the heart is good too.”
“We left [Dallas] July 13th and then came back to Montana, and he’s been doing really good,” Christy said. “He’s acting like a normal kid [and] has a lot of energy.”
The Sturms began receiving support from Enduring Hearts after they returned home.
“I was Googling different things, and Enduring Hearts came up, and I was like, ‘Look at all the stuff they do for these transplant families,'” Christy said. “One was the gas card, and one was the grocery card.”
“It’s so cool to have Enduring Hearts,” she continued. “It helps out so much, especially with everything going on … [When] we got it, gas was extremely high.”
“They’ve just been such a good community,” she said. Christy noted that “there’s no book” on what to do when you leave the hospital, “so we’ve been super thrilled with Enduring Hearts.”
She said one of her favorite aspects has been the meetings with other families whose children have undergone heart transplants. “It’s a good community of people that understand what each of us is going through.”
When sharing advice for other parents whose children may be struggling with health problems, Christy said, “Just know that there are people outside. There are foundations that do help, which is great, and there are other people that do know what you’re going through.”
“Focus on what you can control,” she said in conclusion. “It always goes back to your outlook.”
As the season of giving is upon us, donations to Enduring Hearts can be made here.