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'It gave us our family': 9-month-old Illinois boy receives heart transplant

"It gave us the opportunity to know our son, for him to know his siblings and him to know life outside of the hospital," said mother Jacqueline Hay.

MASCOUTAH, Ill. — A Metro East baby was recently given the gift of life thanks to the doctors at St. Louis Children’s Hospital.

His family lives in Mascoutah, but Children's Hospital is seemingly the only place 9-month-old Ben Hay has ever known.

“We took him home for eight days over Christmas,” said mother Jacqueline Hay.

That’s why it’s easy to see why this is such a big moment for the Hay family.

“Outdoors, he’s maybe been a half dozen times,” said Hay.

Doctors knew that Ben had a heart issue early in his mother’s pregnancy.

“Ben had a variant of a congenital heart defect known as HLHS,” said Hay.  “Hypoplastic left heart syndrome.”

“It’s a disease in which half of your heart doesn’t form properly,” said Dr. Deepa Mokshagundam, a pediatric cardiologist. “Essentially there’s no life expectancy without surgery.”

“It’s hard to see your child very acute, intubated, wounds, chest open, lines, wires, on lots of medications,” said Hay. “It’s very upsetting to know in those moments there’s not much you can do as a parent.”

The day before Thanksgiving the Hay family got the call that would change Ben’s life: A donor's heart had been found.

“That was the gift of life that was given to Ben to allow him to get off the machines,” said Dr. Mokshagundam.

“It gave us our family,” said Hay. “It gave us the opportunity to know our son, for him to know his siblings and him to know life outside of the hospital.”

“Our goal for any kid who has a heart transplant is for them to be able to lead a normal life, go to school, play sports,” said Dr. Mokshagundam.

“To know that he is going to have those experiences alongside his brother and that we get to watch them grow together, is just the greatest gift we could’ve been given,” said Hay.

Ben’s journey at St. Louis Children’s Hospital isn’t over just yet. 

He is scheduled to have a minor stomach procedure, and if all goes well he could be home within a week.

For more information on Ben’s story click here.

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