Valentine’s Day 2018 will mark the five-year anniversary of 14-year-old Lindsey Bingham’s heart transplant, a heart she waited eight months for while being sustained by a Berlin Heart, a miniature, external pump. But that’s just one part of the miraculous story of the Jason and Stacy Bingham family.
With four heart transplants in their family over the past 12 years, the Binghams, members of The Church of Jesus Christ of Latter-day Saints, have learned to be grateful for each day they've been given.
Lindsey, along with her older sister Sierra, 18, and younger brother Gage, 9, have dilated cardiomyopathy, a condition where the heart muscle enlarges and can’t contract normally to pump blood to the rest of the body, causing heart failure. Each of the three children has undergone heart transplants — Sierra has had two.
“You hear stories of pioneers who were pushing their cart and they looked back and couldn’t figure out who was pushing it — I’ve felt that way sometimes,” said Stacy Bingham, their mother. “I don’t know how I had the strength to get through some of the stuff we did, but there was strength coming from somewhere.”
The family’s other two children, Megan, 16, and Hunter, 11, also have markers and are at risk for the disease, but their heart function has been normal so far.
The Binghams' deeply rooted faith and optimism have held them together as they’ve traveled back and forth from their home in Haines, Oregon, to Lucile Packard Children’s Hospital Stanford in Palo Alto, California, several times a year for more than a decade.
“If I start feeling grumpy about something happening in my life, I think about them,” said Sandy Cummings, producer of a MSNBC documentary about the family titled “Heartbreak: Saving the Binghams.” “I think, ‘Look at what the Binghams are handling, and they’re handling it so beautifully. I just need to be quiet.’"
'Something big coming'
Stacy Bingham told the Deseret News her personal journey with her children's sickness began nearly 12 years ago. She remembers sitting in bed one Saturday morning before the kids were awake and turning to her husband and saying, “I feel like there is something big coming because our lives are too perfect right now. We’re too happy.”
It wasn’t more than four or five months later, when her oldest daughter Sierra, then 6, got sick, she said. What started out as the flu soon became an airlift to the Stanford children’s hospital two months later, as Sierra was experiencing heart failure. She was placed on the heart transplant list and on Aug. 3, 2006, received a donor heart that saved her life.
“I knew through her whole experience that whatever happened, if she was able to stay with us in this life or move on to the next, everything would be fine by the time the baby was born,” recalled Stacy Bingham, who was expecting her fourth child at the time. “And luckily, things worked out. That was such a strength to me.”
Their fourth child, Hunter, was born in California right after Sierra’s first transplant. Life slowly went back to normal, despite Sierra’s many hospital checkups.
In May 2012, Lindsey was unexpectedly diagnosed with the same disease as her older sister. She waited eight months in the hospital living on a Berlin Heart before receiving a new heart on Feb. 14, 2013.
Stacy said waiting with Lindsey in the hospital was one of the hardest points of the family's journey. They had watched two children they knew, who had come in after Lindsey, get transplants before her. Stacy, who as a mother felt a responsibility to hold her family together, was struggling and missing home.
She recalled a day when she picked up a copy of the Ensign, an LDS Church magazine. She found a talk by Elder Dieter F. Uchtdorf in which he listed three ways to “find joy in the journey.”
“That was exactly what I needed to hear,” Stacy Bingham said. “I wrote those three things down on a card and made them all pretty. I hung them in Lindsey’s bathroom and the Ronald McDonald House. We would look at those every day and remind ourselves that we need to find the good things about what’s happening.”
Experiences like that, she said, helped her lift everyone else so they could keep going.
It was also during that time Sierra’s body began rejecting the heart she had received almost seven years earlier. Sondra Zenger, a family friend from Palo Alto, watched as Sierra and the family humbly handled her second transplant, which she received in summer 2015.
“Instead of feeling bad for herself, she (Sierra) felt bad for the family whose heart she had and that she couldn’t hold on to it longer,” Zenger said.
Challenges weren’t over yet. During the same summer, then-7-year-old Gage had to get a defibrillator added to an existing pacemaker and “never quite bounced back from that surgery,” Stacy Bingham said.
In November 2015, Gage was put on Heartware, a ventricular assist device. He wore the battery part in his chest and the monitor part in a little backpack. He carried around the backpack for almost 18 months — 512 days, to be exact — until his new heart came in. Finally, Gage’s heart transplant occurred on April 5, 2017.
Though the journey has never been easy, Stacy Bingham is quick to acknowledge the personal growth she and her family have experienced through their trials.
“When we’re all together and going through it together, it’s not easy for anyone. It’s not easy for the kids who had to leave their friends behind and start a new school," Stacy said of the often long periods of time her family has spent in California waiting for their donor hearts. "It’s not easy for the child that’s sick and has to not feel well and be restricted on things they can do.
“When we go through those challenges and those changes together, especially with siblings, they end up supporting each other and helping each other and building each other up.”
Strength beyond your own
Stacy Bingham said there have been “way too many tender mercies to deny God’s hand in everything.” Everywhere they turn, she said, there have been people to support them — from giving her husband a place to work when they were in California to rides to and from the airport.
Another strength, she said, has been her husband, especially as they’ve watched medical problems tear other marriages apart.
“It’s certainly important that we rely on each other,” Stacy said. “That’s the only way we’ve been able to keep our marriage together. We rely on each other and we help lift each other up and go through it together, rather than one here in Oregon and the other there in California trying to live two different lives.”
Zenger said she has been amazed as Jason and Stacy, the “most well-rounded, strong, faithful" people she knows, have stayed calm despite their children’s continual health challenges.
“They fully understand that Heavenly Father gave them these children because he knew they could handle the situation given to them,” Zenger said. “Even more, that they were so grateful they were given these children to do the very best they could with them.”
Dr. David Rosenthal, medical director of the Heart Failure and Transplant Program at Lucile Packard Children's Hospital Stanford has worked closely with the Binghams since Sierra’s first surgery in 2006.
“They are just really committed to taking care of their children,” Rosenthal said. “No matter what the news was that they got in clinic, or in the hospital, no matter how unexpected it was or how poor the timing of it was, their response was to roll up their sleeves and figure out how to deal with it.”
“They have really left an imprint on the whole hospital. They are wonderful people,” he added.
Rob Daines, a home teacher and former seminary teacher of the Binghams in Palo Alto, has also been positively impacted by the family. He said, “I want to be just like them when I grow up."
“I, like most of us, when we face a little adversity, we crumble, or lick our wounds a little, think ‘why me’ and start counting up the various indignities … but they were genuinely optimistic and happy,” Daines said. “I am a better person for having met them.”
Daines reflected on a time he and his son went to home teach the Binghams when Gage was in the hospital. It was in the middle of a crisis and they couldn’t get into the room because of the big crowd of doctors, Daines said, so Jason met them in the lobby.
“My son shared a scripture with him. Our job was to try to lift and give reason for hope, and Jason ended up inspiring us with his faithful resilience. He took things from the scripture my son and I didn’t see and ended up encouraging us and sending us on our way with more faith and optimism than when we came in."
The Binghams' outlook on life has also continued to catch the attention of national media.
On Nov. 25, 2017, MSNBC aired a two-hour documentary called “Heartbreak: Saving the Binghams” about the family's journey from Sierra’s diagnosis in 2006 to Gage’s recovery in 2017.
Producer Sandy Cummings had read about the Binghams' story in a newspaper written when Lindsey was waiting for her transplant and pitched the idea to "Dateline," for whom she worked at the time. Although initially hesitant, the Binghams agreed to do the segment, Cummings said, because Jason wanted to increase awareness of the need of donor hearts.
Cummings ended up following the family around for five and a half years as the Binghams' story continued to unfold. She produced two "Dateline" segments as well as the documentary. Love, respect and faith held the Binghams together through the ups and downs, she observed.
“What impressed me the entire time was that I never heard either one of them (Stacy or Jason), even under all that stress, say a harsh word to each other, or to one of the kids,” said Cummings. “They are incredibly strong and incredibly kind people, just impressive.”
Cummings said she hopes the documentary and the Binghams' inspiring story give hope to those who are struggling with medical issues while raising awareness for organ donation.
In mid-January of this year, Gage and Lindsey went in for checkups at Lucile Packard Children's Hospital Stanford. Both are doing great and no problems were reported, Stacy Bingham said. Sierra goes back later this month.
“We’re in a really good spot right now,” Stacy said during an interview in January.
Sierra, 18, is finishing her senior year. She’s on the dance team and wants to serve a full-time mission for the LDS Church. She hopes to get into BYU-Idaho and study nursing “so she can return that care she has received,” Stacy said.
Megan, Hunter and Gage play basketball, while Lindsey plays volleyball. Every Friday, the family goes skiing together. The kids’ schedules keep the family busy.
“We just try to live in the moment and take things as they come,” Stacy Bingham said.
Stacy and Jason Bingham don't normally talk about the future because they have found life to be unpredictable. They try not to dream too far ahead but Stacy Bingham says they do hope. They hope the hearts their children have will last them the rest of their lives. They also hope their kids won't have to go through the same medical problems with their own children.8 comments on this story
“I hope they can have normal lives and go to college and on missions and get married and start families. It’s just safer if we take in the moment,” she added.
Stacy Bingham said her family’s trial may seem overwhelming to some people, but she doesn’t feel it’s any bigger than someone overcoming a challenge such as an addiction or an abusive relationship.
“Everyone has a trial, but it doesn’t matter what your trial is,” she said. “Heavenly Father is always by your side … He’s never let me down.”