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Waiting For a New Heart, Lindsey Lou Stole Ours

By Sandy Cummings
Dateline NBC 

Lindsey Lou Bingham is a spunky 8-year-old whose smile could melt ice. Since May, she has lived inside Lucile Packard Children's Hospital in Palo Alto, CA, an artificial heart pump strapped to her belly keeping her alive as she waits for a donor heart. What makes her story truly remarkable is that all four of her siblings have the same condition -- dilated cardiomyopathy. There are no other reported cases of a whole set of siblings suffering from this life-threatening disease, a distinction Lindsey's parents Jason and Stacy would rather not have. Neither of them has the disease nor does anyone else in their extended families.

While her friends back home in North Powder, Oregon are out playing on the ranches that dot the landscape, Lindsey waits... tethered to machines that monitor the function of her heart. When Lindsey gets scared about the prospect of getting a new heart, she sometimes leans on her older sister, Sierra. Sierra, now 12, knows just what Lindsey is going through -- she received a heart transplant when she was just six years old. And one day, Lindsey may be the one giving advice to her 3-year-old brother Gage. The day Lindsey received her Berlin Heart pump, Gage was showing signs of heart trouble. He was rushed to the O.R. and given a pacemaker and may need a transplant down the road. Imagine, two children in side-by-side rooms in the ICU and a third child being monitored for signs of rejection of her donated heart.

I learned of the Bingham family while reading an article in the Bend Bulletin, the local paper in the town where I live in Oregon. I was riveted as I read about their plight, their strength and the incredible support of their community. When I reached the end of the article, I thought "I want to tell this family's story on NBC". My first call was to the Bingham family and my second was to Dateline correspondent Keith Morrison, who has a wonderful way with kids and is a gifted writer. I flew to Palo Alto to meet with the Binghams the next day.

The Binghams are an impressive family. As we dined in the hospital cafeteria, I was struck by Stacy Bingham's patience with her other kids, her sense of calm, and by Jason's laser focus on helping his children. Megan, 11, asked lots of great questions about the production process. They're not attention-seekers and agreed to be interviewed for two reasons:  In the hope that it will help their children and that it will inspire people to become organ donors.

Two days after meeting the Binghams, I was back at the hospital, this time with Keith Morrison, a TODAY show producer and a camera crew. I was struck by something Stacy said, how she described the way a person's perspective changes when it feels like the clock of your life has been stopped by a medical crisis. She talked about leaving the hospital briefly one day to pick up something she needed from a nearby mall. "It's almost a Twilight Zone when you walk through the shopping center and there's people going about their daily lives like what color of shoes should I buy today to match this purse. It just seems so ironic because just [across the street there are] families that are worried and sick and suffering and aching for the health of their child to be better."

When Jason and Stacy Bingham's oldest child, Sierra, received a heart transplant after suffering from a rare heart disorder, they thought their scary ordeal was over. They later found out all five of their children either had the same disease, or symptoms that could turn into it. NBC's Keith Morrison reports.

Their home in North Powder is a 14-hour drive from the hospital in Palo Alto so Jason makes the trek home to do the haying, work as a CPA, take some of the kids to dental appointments and get them ready to start school in Palo Alto.

They are a proud family who have asked for nothing. But having sick children is very expensive, even with health insurance. Their friends back home have set up a fund for the Binghams, organized bake sales and auctions. One look at the list of items being sold gives you a sense both of how beloved the Binghams are and how generous the town of North Powder is, with just 490 residents. Some of my favorite items on the list are a steer, fence mending, and bedtime stories read by a kindergarten teacher who will go to the winning bidder's home and read to his children. 

The Binghams say they are humbled by and grateful for the outpouring of support. And not for a moment do they forget that a heart for Lindsey will be a gift from a family that has suffered the loss of their own child.

Dateline and TODAY will follow the Binghams through their journey of waiting for (and, hopefully, receiving) a heart for Lindsey.

 

You can follow the Binghams' blog and learn more about what's being done for them at: www.heartsforbinghams.org

For more information about organ donation, please visit: www.organdonor.gov