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Today in "Your Health," we'll look at an experimental fetal surgery that could prevent some children from developing a severe heart defect commonly called half a heart. But first, Patti Neighmond reports on an earlier generation of heart surgery, and a patient who was one of the first survivors of this same heart defect.
PATTI NEIGHMOND: Jeni Busta's young - 25 years old. But in another way, she's old, among the oldest survivors of surgery that rebuilds the tiny, walnut-sized heart of a newborn.
Ms. JENI BUSTA: I don't remember any specific time where my mom said, you have half a heart. It's all I knew, you know. I don't know what it's like to have a normal heart.
NEIGHMOND: Jeni was born with hypoplastic left heart syndrome. In utero, the left chamber of her heart - the one that's supposed to pump blood around her body - didn't develop. Jeni's mother, Jill Sorensen, was given three options: let her baby die, hope for a heart transplant, or undergo a risky new surgery. Sorensen told doctors that for her, there was only one choice.
Ms. JILL SORENSEN: We want you to do anything you can possibly do to save our baby.
NEIGHMOND: And here's the luck in this story. Jeni was born at UCLA, where a young pediatric surgeon, Dr. Hillel Laks, was among the few doctors performing the Norwood procedure - a surgery which enables the right chamber of the heart to do the work of the left. But it's very risky and 25 years ago, most newborns didn't survive.
Dr. HILLEL LAKS (Pediatric Surgeon): Even the ones that did survive did not have very good cardiac function and therefore, many of them would die later on.
NEIGHMOND: Jeni turned out to be one of the first survivors of the Norwood procedure. Today, more than two decades later, advances in surgery and medications mean most patients do survive. But in Dr. Laks' office, there's still a picture of Jeni at 3 years old - hands clasped in front of her; a happy, smiling face with blond curls.
Dr. LAKS: For someone like Jeni - she's going to have to be intensively followed and treated for the rest of her life.
NEIGHMOND: After surgery, there were two more operations to complete the rebuilding of Jeni's heart - one at 18 months, another at three years. Then Jeni's heart slowed to dangerously low levels. She needed a pacemaker. It lasted only seven years. She's now on her fourth pacemaker, and her heart functions at 70 percent of normal capacity. Jeni's often tired and out of breath.
Ms. BUSTA: I always knew I needed to just stop when I get tired and to be careful in school, because the sickness. You know, I always had to wash my hands. And I won't touch a doorknob. I'll have a paper towel in between my hand and the doorknob. You know, I have to be really careful because of just - it started with a head cold, and then it gets into my lungs. And then infection can go straight to the heart. You know, it's very scary.
NEIGHMOND: College proved too demanding, and so did a job. Jeni can't sit or stand for more than an hour without getting breathless. Yet she seems to flourish within the context of her life and relish her unique achievements -like being one of the first patients with this heart defect to live long enough to change doctors, from a pediatric heart doctor to an adult cardiologist.
Ms. BUSTA: It's a day I'll never forget, just because I had made it this far, and it is a definite possibility I could live a long and healthy life.
NEIGHMOND: Today, Jeni sits on her couch, holding her husband's hand.
Ms. BUSTA: Nick and I got married. And as a wedding gift, he got me a pink bicycle.
NEIGHMOND: The girl who was told to be careful in school is now encouraged by doctors to exercise in order to strengthen her heart. Her husband, Nick, is a high school teacher and an Ironman triathlete who clearly, adores his wife.
Mr. NICK BUSTA (Teacher): She's the real Ironman. To be able to live with something so life-changing and difficult, and to be able to do it with such grace and poise, and to have such an amazing outlook on life while doing it -that takes real strength.
NEIGHMOND: Doctors say Jeni's heart isn't strong enough to have children, and they don't know how long it will endure. It may last into her 50s and 60s, maybe longer. She may need a heart transplant. But already, Jeni symbolizes a milestone. As her mother says, she's a survivor.
Patti Neighmond, NPR News.
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