SALEM, OREGON, February 12, 2024 — Five months before Jacob Anderson V was born, doctors told his parents he had a congenital heart defect that causes the left side the heart to form incorrectly.
"I was born with half a heart," Jacob said, talking about his condition. "My heart hurts sometimes and I can't do everything I'd like to do."
“We thought we were prepared for all the life changes a new child would bring, but we never expected to hear the words ‘congenital heart defect,’ or any of the challenges and choices that would come with it,” said Bianca Torres, Jacob's mom. “It was incredibly overwhelming."
CHD affects 40,000 births in the U.S. each year, about 1 in 100 babies. About 25% of babies born with a congenital heart defect will need surgery in their first year of life.
When Jacob was born, there were no obvious signs or symptoms of a heart defect. He took his first breath on his own, without the aid of life support. Thanks to early diagnosis, Jacob's care team and parents knew he would need to undergo open-heart surgery at just 8 days old.
Jacob's first surgery was frightening for the family. There were many complications including a 20-minute cardiac arrest. But, Jacob is a fighter. He pulled through and was eventually discharged from the hospital a month-and-a-half later.
When Jacob was 3 months old, he was readmitted to the hospital with severe heart failure. He was eventually life flighted to a hospital in California for transplant evaluation. Thankfully, he avoided needing a transplant and was able to have a second surgery to repair more of his heart defect.
At 2.5 years old he had a 3rd open heart surgery completing the series of staged surgeries to prolong life. He has had many heart catheterizations, tests, imaging, labs and therapy to keep him going and get him to where he is today.
“Our journey started with complete uncertainty. CHD was not a part of our vocabulary, but now, we’ve embraced it,” said Bianca. “And, while we still have a long way to go, because of our prenatal diagnosis and the supportive care team, we have our son and he has a chance for a bright future.”
Today, 8-year-old Jacob loves hockey, football (he's a big Damar Hamlin fan), soccer and basketball. He enjoys playing video games with his older siblings and brings a smile wherever he goes. He is passionate about the American Heart Association, too. This year, Jacob has already raised nearly $500 during Kids Heart Challenge at Pringle Elementary in Salem, Oregon. Those funds will go to support research to help other kids like Jacob.
"When we found out about Jacob's condition, his doctors told us this would have been a death sentence twenty years ago," said Jacob Anderson IV, Jacob's dad.
Today, research advances have resulted in longer lives for people born with CHDs, with an estimated 1 million children and 1.3 million adults currently living with CHDs in the U.S. The American Heart Association has committed significant research dollars to advance lifesaving CHD science. In addition to research that the American Heart Association funds each year, the Association has teamed up with several organizations to specifically co-fund CHD-related research.
"More research is needed," Bianca said. "We are so grateful for the American Heart Association and their commitment to continued CHD research so Jacob and others can live full healthy lives."
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About the American Heart Association
The American Heart Association is a relentless force for a world of longer, healthier lives. We are dedicated to ensuring equitable health in all communities. Through collaboration with numerous organizations, and powered by millions of volunteers, we fund innovative research, advocate for the public’s health and share lifesaving resources. The Dallas-based organization has been a leading source of health information for a century. During 2024 - our Centennial year - we celebrate our rich 100-year history and accomplishments. As we forge ahead into our second century of bold discovery and impact our vision is to advance health and hope for everyone, everywhere. Connect with us on heart.org, Facebook, X or by calling 1-800-AHA-USA1.
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Jay Wintermeyer