Imagine going through two back-to-back open-heart surgeries — all by the time you were 9 years old.

In the United States, 40,000 babies are born every year with a congenital heart defect (CHD). Colby Groom was just one of them. Diagnosed with bicuspid aortic valve disease, the most common CHD, his family was told that surgery and lifelong treatment were inevitable.

“When Colby was born, we sadly heard three letters that would somewhat change our lives,” recalls Colby’s father, Daryl. “And those three letters were C-H-D.”

Daryl and his wife, Lisa, were told that surgery was inevitable — but that it wouldn’t be necessary until Colby was in his early teens. Feeling fortunate that they knew about his condition early on, the Grooms decided to go on with life as usual, with a watchful eye.

“Colby was a pretty quirky, unique sort of kid. He was very different and his individuality stood out at an early age,” says Daryl. But when Colby was just 8 years old, his family was forced to face his condition head-on. Daryl says he remembers watching him struggle while doing physical activities, showing signs that he needed help earlier than expected. “He would struggle on a basketball court or a soccer field, and he wouldn’t be able to keep up with the other kids.”

Soon enough, they were told that Colby would need to undergo open-heart surgery immediately. A healthy aortic valve has three leaflets on it, but two of Colby’s were fused together. Daryl and Lisa had to choose between a surgery to repair the valve, or a procedure that would give him an artificial mechanical heart valve. The Grooms chose the first option.

A rollercoaster of emotions

The Grooms gave Colby a few months’ notice prior to the surgery, although it was hard for the then 8-year-old to be able to comprehend exactly what was about to happen. “Of course, he was scared and it was hard,” says Daryl. “But he went in there quite bravely, not really knowing what the odds were and what the consequences were.”

The Grooms were told there was a 90 percent chance of success. But about a month after the surgery, they were told that the surgery had failed. “We were devastated,” recalls Daryl.

The family was told that as soon as Colby’s body could withstand another surgery — which included cutting through the breastbone — he would need to go through it all over again.

Six months later, Colby was set for a second surgery, this time to receive the artificial heart valve.

“We thought that telling him the first time was the toughest thing in our lives,” Daryl recalls. “But having to tell him the second time that he had to have open-heart surgery was gut-wrenching and anguishing.”

“He knew the pain during the surgery. He knew the pain in an ICU… We just knew the terror on his face that would be there when we did eventually tell him.”

Recovery is more than just physical healing

As difficult as it was, Colby got through the surgery successfully, though he will have to take warfarin for the rest of his life. Now 19 years old, he recalls those months as an extremely difficult time in his life. But the demands of surgery go beyond just physical healing and recovery — he recalls how getting reacclimated to life at school was even tougher.

“One of the hardest [things] was actually coming back to school and trying to be on the same level as everyone, when I missed a lot of time — physically, academically, socially, in a lot of ways,” recalls Colby. “That was probably the hardest part.”

“But it also made me understand a lot more about life and what I want to do, which opened my eyes to trying to give back.”

Daryl says the psychological effects took a toll on Colby: “He had a very difficult time, not really wanting to be in this world. My wife and I would cry most nights as we would hear Colby cry in his room about his terrible life,” Daryl said. “We worried for him.”

Because Colby’s mom, Lisa, had immediate family members with heart conditions, his parents were always involved with donating to the cause. To help lift his spirits after his surgeries, his parents encouraged him to get involved with the American Heart Association (AHA).

“We said to him, ‘You know, you may have a broken heart, or a heart that’s had repair, but you’ve got a good heart, so why don’t you get involved in helping other kids?’” recalls Daryl.

From there, Colby got involved with the AHA and Children’s Heart Foundation. He’s appeared in survivor videos, speaks at Heart Walks, volunteers, and visits hospitals. One such visit, on Valentine’s Day, sticks out to him because it was one of the first times he’d been in a hospital setting as a visitor, rather than as a patient, since his own surgeries. “I saw all the kids going through what I went through, or even worse, who have been in there for so long, and missing out on the life they should be living.”

Then, when Colby was in fifth grade, he got involved with his sister’s high school senior service project for the AHA: They invited people to come and pay to see his scar and listen to his artificial valve tick.

They ended up raising $1,000 from their own backyard. Seeing how much good he was capable of doing just by being a survivor, Colby was determined to do more.

Turning heart failure into winemaking success

Because his father was a successful winemaker — Daryl had been head winemaker and then an executive vice president of winemaking at various wineries before creating his own Groom brand — Colby came up with an idea.

“I asked him, ‘I want to learn more about what you do in making wine. Do you think we could make a wine together?’”

“The immediate reaction was, ‘No, I’m watching football. Go away,’” laughs Colby, “because I had a lot of harebrained ideas like that, like going to the Bermuda Triangle for a vacation.”

But Colby wouldn’t let up until his dad finally agreed to the idea. Colby told Daryl that if he agreed to make a wine with him, he would donate the money they made from it to the heart community — “And immediately he became a big backer.”

The original plan was to make two barrels of wine that they could sell to a friend who runs a restaurant, and then donate the proceeds — which they estimated would round up to $500 — to the AHA. And, in 2010, that’s exactly what they did.

But word quickly spread.

“I told a lot of people what we were doing, and how much fun we were having making this wine together,” says Daryl. One of the people he told was a wine buyer for Walgreens, who said he’d love to get the chain involved. “That’s when Colby Red really became a thing,” says Colby, “and we went from those two barrels of wine to about 20,000 cases a year.”

And after an appearance on the Today Show, Colby Red began to take off. Soon P.F. Chang’s, Fleming’s Steakhouse, and California Pizza Kitchen began selling the wine at their restaurants.

And the momentum keeps going. Recently, Daryl partnered with United Airlines — whose CEO is the recipient of a heart transplant — and the wine is now served on all international United flights.

The Grooms decide as a family where all the fundraising proceeds made from Colby Red — now over $1 million dollars — go. Daryl estimates that about $750,000 has gone to the AHA. The rest has been donated to other organizations, such as Children’s Heart Foundation, the Make-A-Wish Foundation, and other foundations, as well as to heart health research and individual families with children facing heart disease.

“There’s always someone that can have it worse, and there’s always people that deserve help through it,” says Colby. “I think that’s one of the biggest things I’ve learned going through everything.”

“People who donated 20 years ago saved my life. And if they saved my life, I owe it to them to continue to work to save other kids’ lives.”

An unimaginable impact

The Grooms have a new goal of raising $5 million, and are hoping their global launch will help make this happen. Already, Colby Red is available in Canada, with those proceeds being donated to the Heart and Stroke Foundation of Canada and the Children’s Heart Network.

And in 2017, Colby Red made its way to Japan. The Grooms hope to travel there at the end of the year to spread awareness. “We will donate to a children’s heart hospital in Japan for all the money that we’re starting to raise there,” says Daryl.

When Daryl thinks about how much of an impact his son has made — from creating Colby Red to touching so many lives as an AHA spokesperson — he can’t help but be overcome with pride.

“The biggest pleasure of all is watching a 10-year-old boy who couldn’t look anybody in the eye, and didn't really want to be in this world, now traveling the United States as a sought-after guest speaker in every major city,” he says. “I watch him get up on stage in front of 800 to 1,400 people telling his story in an emotional, real, raw way, and giving money to help those organizations.”

And what hits home most is seeing how Colby touches the hearts of parents with kids who live with heart disease.

“[They] go up to Colby afterwards and say, ‘You know, you’re an inspiration for us. Sometimes we don’t have a lot of hope, and our kids can be like you.’”

For Colby, the chance to travel around with his family and work with his father on Colby Red has been invaluable. “He inspires me every day to be the best and happiest version of myself I can be. Every day, I’m thankful that I do get to work with him on this.”

And how does it feel watching an idea you hatched in your living room grow into a force that’s raised millions for heart research?

“I get a lot of Snapchats of people having the wine, or finding it in their local stores. Or being on United Airlines and finding it, which is a really cool feeling,” says Colby. “But it’s even cooler thinking about the people that I don’t know at all.”

“There’s many people that I don’t know, and who don’t know me. But they are still buying the wine because of my story just to help out kids. That is the best feeling, I’d say.”