Just a day after Elijah Smith was born, doctors discovered a problem: The newborn had hypoplastic left heart syndrome, a congenital heart defect where reduced blood flow prevents the left side of the heart from forming properly. He needed surgery immediately to survive.
“We felt like we had been sucker-punched,” Sarah Smith, Elijah’s mom, told TODAY. “We didn’t know if he was going to die, if we were ever going to see him again.”
Doctors had not detected any problems with Elijah’s heart earlier. Suddenly, the Smiths faced an uncertain future for their son. They agreed to transfer Elijah to Children’s Healthcare of Atlanta for surgery, which they knew would help keep their son alive. But they didn’t know for how long.
“These surgeries are considered palliative. We are making him comfortable, but his heart will give up and he’ll need a transplant,” she said.
Yet, something amazing happened. Elijah’s first open-heart surgery was successful. So were his second and third surgeries — the last of which he had when he was 3, nearly seven years ago. He continues to get stronger and thrive. He went from taking nine medications a day to taking one.
“He is doing so well,” Smith said. “We realize the time we have now with him is a gift.”
Thanks to his successful treatment, Elijah had an opportunity to take part of a campaign that plays on the popular #10YearChallenge on social media. But this challenge shows the before and after for numerous congenital heart defect patients who received successful treatment at Children’s Healthcare of Atlanta. This gives families the chance to see how far their children have come.
“We take a lot of pictures and everything is a milestone,” Smith said. “It is amazing he has overcome all he has and his life is so normal.”
While Elijah is the oldest child in the campaign, the only one who is 10, the before and after pictures of children who have undergone numerous procedures show how much progress has been made in treating congenital heart defects. The seven children who are part of the campaign have had a combined 16 open-heart surgeries and 11 heart catheterizations.
Find other heart families
About 1 percent of births, or 40,000 babies, have congenital heart defects annually, making them one of the most common types of birth defects, according to the Centers for Disease Control and Prevention. About 25 percent of those babies are like Elijah and experienced an immediate need for surgery to keep them alive.
Michael Henderson, like Elijah, has experienced three heart surgeries. When the now-8-year-old was 3 days old, he was diagnosed with tetralogy of Fallot. On top of his surgeries, he has had four heart catheterizations and seven other general surgeries. Still, he's healthy enough to play baseball, which he loves. Hailey Ferguson was born with a whole slew of conditions, including a hole in the wall of the lower chambers of her heart, pulmonary stenosis and transposed great arteries, to name only a few. After two surgeries and two catheterizations, the now-3-year-old enjoys dancing and singing and playing outside.
Seeing these success stories can help new parents as they grapple with a congenital heart defect diagnosis.
“For parents facing a new diagnosis, my biggest advice is to find other heart families. It is so helpful to be able to seek comfort and help from people who have been in your situation,” Erica Ferguson said in a statement.
Today, Elijah is in fourth grade, and he loves creative writing, science, video games, reading and drawing. His parents don’t know if he will still need a transplant or a new valve. But they're enjoying every day with him.
“He is always making us laugh,” Smith said. “It is amazing to see he is doing well. It’s something we never pictured.”