Newborn Heart Surgery Survivors Grow Up

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Jeni Busta, 25, dots all of her “i’s” with a heart. It may seem silly at first; but when you understand why a heart figures so prominently in Jeni’s young life, you realize the poignancy of her penmanship.

Jeni is one of the earliest long-term survivors of a risky operation first performed 29 years ago that rebuilds the tiny walnut-sized heart of a newborn. She doesn’t remember any specific time when her mother told her she had half a heart.

“It’s all I knew,” Jeni says. “I don’t know what it’s like to have a normal heart.”

Doctors don’t know what causes this rare congenital defect, called hypoplastic left heart syndrome, or HLHS for short. In utero, the left side of the heart does not develop properly. The mitral and aortic valves, the first part of the aorta itself, and the left ventricle of the heart are small, underdeveloped or nonexistent.

The most critical defect in HLHS is the left ventricle. In a normal heart, this chamber is powerful and muscular, pumping blood throughout the body. When the chamber is small and poorly developed, it’s unable to adequately pump blood. Therefore, the body does not get the blood flow it needs to survive.

A New Procedure
When Jeni was born, most children with this heart defect died. And, at the time, Jeni’s mother, Jill Sorensen, was given three options: She could provide palliative and comfort care at home, and her baby would likely die within one week. She could hope for a heart transplant, even though it’s extremely rare to find a donor heart for a newborn. Or, she could allow Jeni to undergo a risky new surgery called the Norwood procedure where the surgeon literally rebuilds the heart in order to enable its right chamber to do the work for the nonfunctioning left chamber.

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