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Twenty-four hours after Henry Johnson was born, a routine test performed on all newborns in Minnesota found that his blood oxygenation levels were critically low. Further testing revealed that Henry was born with a serious heart condition called Hypoplastic Left Heart Syndrome (HLHS). At 5 years old, he's already endured three open-heart surgeries, but they aren't a cure.
Someday, Henry’s heart will get tired and he will need a heart transplant. The Johnson family hopes Henry won’t need that transplant until he is an adult, so science can continue to advance.
Each year, 40,000 infants are born with a congenital heart defect in the United States, affecting nearly 1% of births. Advancements in research provide hope that more infants with congenital heart defects will survive to adulthood.