Feedback
Dateline

Family Faces Life-Threatening Heart Disease with Courage and Grace

Stacy Bingham calls it her "D Day": June 8, 2012. It's the day she and her husband, Jason, learned that all five of their children had a deadly condition called dilated cardiomyopathy or markers for it. Their eldest daughter, Sierra, had received a donor heart six years earlier and the Binghams had been told it was a one-off; the two other children they had at the time were tested and appeared to be fine. Stacy was pregnant at the time with son Hunter and Gage arrived two years later. Life was sweet, filled with work, sports, school and play.

The Bingham family at Lucile Packard Children's Hospital in 2013 while waiting for a donor heart for youngest daughter Lindsey.

Related: Dateline NBC's 'Where the Heart Is' Sunday January 17 at 7/6c, 9pm PST

But then in May 2012, their youngest daughter, Lindsey became ill. The Binghams - and their doctors -- were stunned to learn that now Lindsey's heart was failing. She was flown to Lucile Packard Children's Hospital on the Stanford Campus in California. Soon, she was placed on an artificial heart pump to sustain her until a donor heart could be found. On that same day, her youngest brother, Gage, "wasn't acting right", says Jason, and needed to have a pacemaker implanted in his tiny chest. At least for now, their other two children, Meghan and Hunter, are healthy but it's possible the disease could strike them at some point in their lives.

WHAT IS DILATED CARDIOMYOPATHY?

The condition that is attacking some of the Bingham children causes enlargement of the heart, usually starting in the left ventricle, the main pumping chamber. This causes the heart to pump inefficiently and can cause irregular heartbeats, blood clots or sudden death. Lindsey was placed on a Berlin Heart, which pumped blood for her. You can see in our story the transformation in her health as she was on the device, growing stronger with blood flowing efficiently through her body. The machine makes a distinctive sound - one Lindsey actually said she missed after she received her donor heart.

The Berlin Heart 2:56

WHAT'S CAUSING THEIR DISEASE?

The Binghams live in Haines, Oregon, a tiny town of about 400 on the Oregon-Idaho border. Jason and Stacy wondered whether it was something in their well water or some other environmental toxin that caused their children's heart condition. They had tests done and nothing looked suspicious. Doctors now believe the cause must be genetic, though neither Jason nor Stacy, nor anyone on either side of their families, has the disease. Genetic testing has been done on all five of the Bingham children but the gene hasn't yet been identified.

Lindsey hugging her father Jason before her heart transplant surgery in 2013.

HOW LONG DO HEART TRANSPLANTS LAST?

Many people assume it's a "one and done" surgery. In reality, they don't always last forever. The immune system is suppressed in transplant recipients to fight off rejection. However, it can't be suppressed completely or patients are at risk of infection. According to Dr. Seth Hollander, a cardiologist on the Binghams' healthcare team at Lucile Packard Children's Hospital, "as the donor heart spends time in a person's body, the body learns to fight against it and develops a memory for how to attack the heart. And so over time, the body gets better and better at attacking the heart." In Sierra's case, doctors were running out of options nine years post-transplant as she showed signs of rejecting her donor heart. She was not a good candidate for a heart pump like Lindsey's because her type of heart failure was diastolic - the part of the process where the heart muscle relaxes.

WHY BECOME A DONOR

Here are five great reasons to consider becoming a donor: Sierra, Meghan, Lindsey, Hunter and Gage. One organ donor can save up to eight lives. There are currently 121,649 people waiting for an organ. 22 will die each day waiting.

The Bingham Family Bingham Family

Because of advances in medicine, there are more people now eligible for transplants because doctors are able to keep them alive longer with artificial devices, yet the number of donors hasn't increased enough to match the need.

The Binghams are extremely grateful to those who donated organs that saved two of their children's lives and may save more in the future. Their youngest son, Gage, is now waiting for a donor heart.

For more information about organ donation or to sign up online, visit organdonor.gov.