Three-year-old Winter is nonverbal, but she has no problem communicating. Outgoing and bubbly, she loves to play and adores her big brother. But she wasn’t always the active social butterfly she is now. Born with congenital heart disease (CHD), Winter spent the majority of the first two years of her life in various hospitals. She has undergone countless procedures and 3 open heart surgeries. She had her first at just three weeks old.
Winter’s parents knew in advance that she would be born with a heart defect. They consider themselves some of “the lucky ones.” They were as prepared as they could have been, and Winter has fought through every setback that has come her way. She is thriving now and more stable she’s ever been. But Winter’s struggles aren’t over.
“Winter is a chronically ill medically fragile child,” her mom shares. “We’re on a life-long emotional rollercoaster with high highs and low lows. That’s true for all families of children with CHD. That’s why it’s so important that we’re there for each other. It’s amazing how much easier this life is with a team, when you have people who are cheering you on and supporting you.”
After struggling through the isolation of having a medically fragile child during a pandemic, Winter’s mom eventually connected with fellow CHD parents and support groups.
“I went into these groups with selfish motives,” she recalls. “I wanted support from families who had been through the struggle. But I learned that it’s not just about what the community can do for us; it’s about what we can do for the community. Helping other families has been a huge part of the healing process for us.”
Winter’s mom pours her time, energy, and resources into advocacy to combat the challenges CHD brings to families like hers. “We have to take it one step at a time,” she notes. “It’s overwhelming to think about how much there is to do. We do what we can – raise awareness, support families like ours, and celebrate Winter and all that she is.”
Her goal is simple. “I just want more people to know what CHD is,” Winter’s mom says. “Recently, I was at a speaking engagement and asked the audience who knew what childhood cancer was. Of course, everyone raised their hands. Then I asked who knew what cystic fibrosis was. Fewer hands went up, but the majority still raised their hands. Then I asked who knew what CHD was. Almost no hands went up. That’s what I want to change.”
Each year in the US, about 40,000 children are born with congenital heart disease. Winter’s mom hopes that raising awareness will make a difference not only in her daughter’s life but in the lives of all the children currently living with CHD and those who have yet to be diagnosed.
Today is the last day of Congenital Heart Disease Awareness Week. But Winter’s fight doesn’t end today, and neither should the fight for CHD awareness. We can all make a difference by sharing stories like Winter’s and spreading the word about CHD.