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Patient Stories

Jenna's Story

"This is just my new heart. I’m a brave girl. Don’t be scared."

Photo of Jenna and her parents sitting on a red cubeHalfway through the pregnancy, Jenna's parents were told she'd be born with only half a heart. Their doctors said they could terminate the pregnancy or continue with it, though she wouldn't survive long after birth. "Those were not options," says her dad. So when she was born, they brought her to the care of Dr. Allison B. Levey and Dr. Emile Bacha at NewYork-Presbyterian Morgan Stanley Children's Hospital.

At just six days old, Jenna had the first of three surgeries to keep her alive by making the one pumping chamber of her heart do the work of two chambers that a normal heart would have. But many patients in this situation eventually need a heart transplant. When Jenna was four, Dr. Warren A. Zuckerman and her parents got ready for it.

But how do you prepare a little child to receive a new heart? Alison, a Child Life Specialist at NewYork-Presbyterian, empowered Jenna’s parents to have “the conversation.” “That usually goes something like, ‘There was another boy or girl who was sick and the doctor could not make them better. And their mom and dad gave us the best gift ever — which is your new heart,’” says Alison.

On the day of her transplant, Jenna's parents spent a long time in the playroom with her. “It was really tough to hang in there,” says her mom. There were several complications. But Jenna was incredibly resilient and pulled through with the help of her medical team. In fact, just five months after her transplant, this little girl was ready and raring to go to kindergarten.

About Hypoplastic Left Heart Syndrome

In normal hearts, there is one chamber to pump blood to the lungs and another chamber to pump blood to the body, and they work in parallel. With hypoplastic left heart syndrome, the heart has only one pumping chamber instead of two. The standard treatment for hypoplastic left heart syndrome is a series of three surgeries that allow for the single ventricle to pump blood to the body and for the blood to then travel to the lungs before returning to the heart.

Child Life Program at Morgan Stanley Children's Hospital

This program gives patients like Jenna access to child development experts who help children understand, cope with, and master their medical experiences. Child life specialists recognize a child's reactions to the stresses of illness and medical procedures and assess a child and family's psychosocial needs and provide appropriate individualized interventions. These interventions include preparations for tests and procedures, coping strategies, and diversion during procedures, as well as play activities that help to normalize the environment as much as possible.