As Aidan Elizondo bounced a blue balloon around his living room Tuesday, he laughed and batted it toward his brother, his mother and his father.
The idea, the Woodway Elementary School 7-year-old said, was to catch it before anyone else and not let it hit the ground. And when the balloon did hit the ground, the game started over. He bounced from one corner of the room to the next, keeping the balloon in the air as long as possible without tuckering out.
Four years ago, his invented game would have been unimaginable. Playing outside for long periods of time, or pestering his two older brothers to wrestle also would have been off the table. And before age 3, Aidan’s efforts to cry or simply eat only ended in exhaustion, his parents, Emilie and Rudy Elizondo, said.
Aidan was born with only half his heart properly developed. In October 2010, mere hours after his birth, he was diagnosed with a congenital heart defect. Had he not been flown soon after the diagnosis from Waco to Cook Children’s Medical Center in Fort Worth to have open heart surgery five days later, the defect would have been fatal, his parents said.
The surgery was the first of three Aidan had before age 4.
Congenital heart defect awareness week ran through last week, and congenital heart defects affect one in every 110 babies, according to Mended Little Hearts, a nationwide support organization. With the awareness week in mind, Emilie and Rudy Elizondo wanted to share their son’s story to show other parents defects are survivable, with prayer, support and a will to fight.
“I think a mother might find out she’s going to have a baby and then find out her baby has a heart defect and be really scared and not know anything about it,” Emilie Elizondo said. “There’s just not enough awareness of how much doctors can do for these kids. It’s more of like, ‘It’s the end of the world.’ But Aidan is doing so well, I thought we need to spread awareness.”
During her pregnancy, Aidan showed no signs of complication, she said. Only after his birth did his health take a turn, she said, as Aidan ran up and spelled his name into a microphone during the interview.
He laughed, then bounced back toward the living room, as his mother continued her story at their dining room table.
“I can only hop with one foot,” Aidan yelled.
“And that’s the extent of his attention span,” Rudy Elizondo said with a chuckle of admiration.
Two hours after Aidan was born, a nurse noticed he was turning gray and “floppy,” his mother said. The nurse told her Aidan was not fighting like he should be. His temperature was low, and his oxygen levels were dropping.
As doctors took Aidan to a neonatal intensive care unit and the couple waited for an answer, the reality of the situation sank in, Emilie Elizondo said.
“Something in me told me, ‘Hey, this is serious.’ We talked and said we needed to contact our family and friends and ask them to pray,” she said. “Normally, I wouldn’t worry if it was for no reason, but something in me told me I needed to tell people now.”
Support from loved ones and Bible verses and songs that stuck in their head helped them stay strong, she said. Rudy Elizondo said he remembers his wife walking over to a whiteboard in the nurses’ station and scribbling Exodus 14:14 where everyone could read it.
“It was a roller coaster, but if I can encapsulate it, Emilie was right,” he said. “My view of it was that was just Emilie. She never slept. She never rested for years, literally years between surgeries from when he was born. Literally, years, she didn’t get eight hours of sleep. …Whatever it took, she sacrificed. Whenever she says she got that verse, and felt strong about God saying that, she was the one who carried it out. She was the one who had the strength to do it.”
An hour into their wait that day, doctors told the family they had limited time to get Aidan the help he needed in Fort Worth. He was taken in a life-support incubator, and because there wasn’t enough room in the helicopter, they drove up the same afternoon, Emilie Elizondo said.
“I felt like I was watching all this happen to somebody else, like I was watching a movie of myself and I wasn’t in my body anymore,” she said. “I was in shock, and thought this couldn’t be real. I didn’t know anything about heart defects. We had a friend in college who talked about a hole in his heart, but I never knew heart defects could be anything besides a little hole in your heart. I never knew how serious it could be.”
Seven weeks later, they brought their baby home for the first time. Aidan was too exhausted to be breastfed and could not eat without a feeding tube. He could not come home until doctors knew he could digest a full meal, his mother said. He still has a feeding tube today. He uses it less, and his parents are hopeful he may have it removed soon.
As Aidan grew older, the couple juggled round-the-clock feedings and diaper changes with cycles of medicine and watching out for signs of stress so their son could remain healthy. They managed speech therapy and sensory therapy, doctor appointments and other needs, Rudy Elizondo said. And they did it all with help from Emilie’s parents and with support from the community and visiting healthcare workers, she said.
As if on cue, Aidan ran back up to the table.
“Mom, are you talking?” he asked. “Dad, are you going to watch them talk? Dad, do you know what game I’m playing over there?”
But with no major complications from the last surgery, Aidan’s energy increased and he started showing signs of fighting for himself more, his parents said. Rudy bought a large T-shirt for Aidan at the time, and he hung it up in their bedroom, determined Aidan would one day be big and strong enough to wear it, Emilie said.
The day the shirt finally fit two years later was the day Emilie realized how much her son has overcome his struggle since the day he was born, she said.
“I’ve seen him grow a lot. When I first started, he just turned 2,” Aidan’s respite caregiver Debra Utley said. “He was not very active. He mainly sat in a chair and didn’t like me, didn’t like any changes. It took him a long time to adjust, and he wasn’t eating well. Now, he’s running and jumping and climbing and he’s eating very well.”
Now eager to contribute to the conversation, Aidan said he didn’t remember much before 3, but he knows he eats more solid food now than he did. And unlike young children who don’t like to eat their vegetables, he is quick to tell anyone who asks his favorite solid food is broccoli with ranch, he said.
Asked what a book about him would say if someone writes one someday, Aidan responded:
“My brother Sam says we’re going to go, go on adventures. … On Sunday we watched ‘The Emoji Movie.’ Write that on your paper.”