Congenital heart defects are deformities in the heart that are present at birth. It wasn’t long ago that a congenital heart defect was a grave diagnosis.

When Steve Grout was born in 1955, doctors told his mother not to get too attached. Born with four separate heart defects, he wasn’t expected to live past his first week. But a week went by, then a month, then a year. Steve kept growing and was in relatively good health throughout childhood, even if he had challenges.

“He didn’t like to dwell on his limitations, but it was frustrating when the other boys were able to play baseball and football, and Steve would easily tire and have to spend the rest of recess inside,” says Barbara Grout, Steve’s wife. He had a desire to learn chess at this time, so his mother drove him to a rec center, where he played with adults once a month. Chess became his replacement for sports, and he later became a chess master.

Star patient

Despite his health challenges, Steve achieved remarkable academic and professional success. He graduated from the University of California and went on to pursue a graduate degree at Stanford University. He then earned a law degree from the University of Arizona, where he made Law Review. Steve practiced law and taught himself investing. “Steve was brilliant and determined,” Barbara says. “He always found a way to do what he loved.”

Steve had two strokes before age 35. He frequently had to travel to California for care because Phoenix didn’t have any cardiologists who specialized in congenital heart disease in adults at the time. After all, kids with congenital heart disease didn’t usually survive to adulthood.

After his second stroke, his Los Angeles doctors told him about a new surgery called the Fontan procedure, a complex surgery that reroutes blood through the heart to the lungs. They told him he had a 50-50 chance of surviving it. “Steve just said, ‘I have no chance if I don’t do it,’” Barbara says.

The surgery, which Steve had in 1988, gave him a new lease on life. “For the first time, his fingernails were pink, and he could breathe well,” Barbara says. “He proposed because he finally felt like he had a future.”

While Steve’s surgery was a success, he still required regular care from a cardiologist. That meant traveling to California each time he needed a checkup or treatment. Then in 2017, Phoenix Children’s launched an adult congenital heart disease program.

“There are now more adults living with congenital heart disease than children— about 2 million, and that number increases by 50,000 people each year,” says Jordan D. Awerbach, MD, medical director of the Stephen C. Grout Adult Congenital Heart Disease Program. “That hasn’t always been the case. It has only been in the past decade that the need for congenital cardiologists who are also trained to care for medically complex adults has been realized.”

And it’s still very much a growing field. Phoenix Children’s adult congenital heart disease program is one of only 53 in the country today. Depending on which direction a patient travels, the next closest center is between 350 and 1,000 miles away.

A lasting gift

Steve was so grateful for the program that when it came time to make end-of-life arrangements, he specified that he wanted Phoenix Children’s to be able to learn from his heart when he died. “Stephen was passionate about education, and his incredible gift of donating his heart and lungs for teaching and research has already had a profound impact,” Dr. Awerbach says. “His anatomy has been studied by all of our cardiology fellows and all of our students from the University of Arizona College of Medicine during their cardiac anatomy block.”

 Additionally, the Grout Family Trust created the Stephen C. Grout Endowed Fund for Adult Congenital Heart Care at Phoenix Children’s in Steve’s honor. The fund will be invested and distribute out a percentage in perpetuity, meaning Steve’s legacy will live on indefinitely.

“This transformational gift will support the creation of an adult congenital heart disease fellowship here at Phoenix Children’s to help address the national shortage of providers,” Dr. Awerbach says. “It will significantly contribute to the care of our adult congenital heart disease patients.”

A Legacy of Hope

To learn how you can leave a legacy that will bring a future of hope for the children of tomorrow, contact Nicola Lawrence, associate vice president of philanthropic advising, at 602-933-3870 or giftplanning@phoenixchildrens.com.

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