5-year-old girl born with half a heart; family raises awareness about rare disorder

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5-year-old girl born with half a heart; family raises awareness about rare disorder
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Katherine’s heart defect hasn’t stopped her love for others. Her dad says she’s caring, empathetic, and concerned about the well-being of others.

Gary Lange spoke with FOX Television Stations about hypoplastic left heart syndrome.At just 5 years old, Katherine Lange has endured three open-heart surgeries, almost 40 blood tests, nearly 10 heart catheterizations and several hospital stints.

Her father, Gary, said that’s because his daughter was born with half a heart, a rare disorder known as hypoplastic left heart syndrome. "The left side of her heart never developed, or its severely underdeveloped," Gary told FOX Television Stations. "She’s basically missing half her heart." Compounding the ordeal, Gary said the pressure from her heart has led to her liver leaking protein. Gary said he and his wife, Casey Armstrong-Lange, were informed about their daughter’s condition when Casey was 20 weeks pregnant. They had the option of terminating the pregnancy but chose to carry it out.

But Katherine’s heart defect hasn’t stopped her love for others. Gary described his daughter as caring, empathetic, and concerned about the well-being of others."This journey so far has had its ups and downs but I can assure you I would not trade it for the world," he posted. According to the U.S. Centers for Disease Control and Prevention,The CDC estimates that every year about 1,025 babies in the U.S. are born with the disorder.

Treatments include medications and multiple surgeries not to cure the disorder but to restore heart function. However, patients could have lifelong complications. Katherine currently lives at home but often travels to Children’s Hospital Colorado in Aurora for medical procedures.

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