Blog Post

Parents struggle with five kids who may need heart transplants

June 6, 2013

    Paige Baschuk, Daily Briefing

    When one family thought their run of bad luck was finally over, the nightmare began again.

    Jason and Stacy Bingham had already watched one of their five children—their daughter Sierra—undergo a heart transplant in 2006. But six years later, another daughter—Lindsey—began to experience similar symptoms, ranging from a stomachache to a swollen face. And the Binghams soon discovered that another child was suffering from a disease called dilated cardiomyopathy, which weakens the heart over time. 

    Lindsey was quickly transported to Lucille Packard Children's Hospital at Stanford University, where she was put on a heart transplant waiting list. Meanwhile, the Bingham's three other children were tested; all of them either had cardiomyopathy or were at high risk for the disease. Physicians told them that every one of their children may have to have a heart transplant, even though the rare genetic condition affects only six out of every one million children.

    As the family waited, the three other children were tested; all of them either had cardiomyopathy or were at high risk for the disease. Physicians told them that every one of their children may have to have a heart transplant, even though the rare genetic condition affects only six out of every one million children.

    Meanwhile, Sierra's body began rejecting her heart.

    "I couldn't keep my composure and I remember just sobbing," Stacy recounted on NBC's Dateline. "That light at the end of the tunnel is so close…it's right there and then the tunnel collapsed."

    Through treatment, Sierra's body stopped rejecting her heart, and in February of this year—after waiting for 239 days—Lindsey received a new heart. Despite their extraordinary circumstances, the family's spirits remain high.

    "We've walked away twice now with two children still alive and that's more than a lot of people can say here," Stacy said.

    The Journey to Personalized Medicine

    How can your organization help patients with genetic testing and targeted therapies?

    From risk assessment  to shared decision-making to self-management, the Oncology Roundtable has identified nine steps—laid out in this easy-to-navigate infographic—that your organization can take on the path toward personalized medicine. 

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