Tiny Ethan Ellis was only 5 days old when he was diagnosed in 2001 with aortic valve stenosis, a condition about which his parents Karen and Scott Ellis knew little.
It means that the valve between the aorta and the heart's left ventricle is too narrow. In some cases, the valve is replaced. Sometimes, surgery isn't needed until complications occur in adulthood. In other cases, like Ethan's, it's more complicated. Despite two angioplasties and a valve replacement, he developed pulmonary hypertension. Then he got pneumonia. He died in March, barely 2 years old.
Karen Ellis' coworkers at the Utah Housing Corporation were loving and supportive. Though she quit to be home with Ethan, she often brought the intelligent, giggling little boy into the office to visit her former colleagues. He was written on the hearts of her friends, none of them more concerned than Robin Saeva. She kept up with what was happening to Ethan.
When her own son Nicholas was born seven months ago with the same condition, she had an inkling what might lie ahead in terms of treatment.
Thursday, the two women were brought together again at the Salt Lake office where they'd long worked side by side. "In memory of Ethan and in hope for Nicholas," the staff at Utah Housing Corporation has been raising money for heart research and plans to participate Saturday in the three-mile heart walk sponsored by the American Heart Association. To date, they've gathered slightly less than $4,000.
"It's a no-brainer from an employer standpoint," said company president and chief executive officer William Erickson. Companies spend a lot of money training and retaining their employees, he said. It makes sense for the company to support anything that raises employee awareness of the need to stay healthy, including taking care of their hearts.
The impetus came from the staff, not Erickson. His wife, Joy, is spokeswoman for the American Heart Association and he wanted to avoid any appearance of a conflict. But when "in two years, two of our most valued employees had babies that suffer from the same heart defect, and we love those employees so much," he said, he was happy the staff had a plan to help. "The next dollar raised for research might be the one that makes the difference."
It was research, said Karen Ellis, that gave her two priceless years with her son. "I'm counting on a lifetime," said Saeva.
Sporting bright yellow T-shirts promoting the walk, with the legend "for Ethan and Nicholas" on them, Karen and Scott Ellis are excited about the baby they're expecting next February. And more than happy to talk about Ethan's condition, his fighting spirit, the joy he brought into their lives.
Robin Saeva simply brought Nick along to show coworkers how well he's doing.
Because it's a lifelong heart defect, doctors at Primary Children's Medical Center see Nicholas often — at least every three months. Doctors told Robin and her husband Sam that if they could get Nicholas through his first year without the condition getting worse, there was a good chance he'd be able to wait until he's an adult to have intervention. It wasn't to be. Though he looks healthy, his aortic valve stenosis has been quite severe. Three months ago he had an angioplasty. And he may need more later.
"We go from appointment to appointment and deal with what news we get," his mother said.