Courage. Join them where the heart is. Welcome to dateline, everyone. Im lester holt. Imagine, five children in the same family, all with signs of a deadly Heart Disease. Weve been following their story for years now. And, as you watch, put yourself in their parents shoes. Could you be as brave as they are . Here is keith morrison. When Jason Bingham thinks of home, what he sees in his minds eye, its as much a part of him as breathing, as his own heart. Its gods country. You cant see any neighbors as far as you can see. Faithful horse, good dog and sturdy truck is about all he needed out here. What happened when jason met stacy was well, love, brand new, unique. But for them, way out here in gods country, it truly was. Haines is a dot, a speck in a grand sweeping landscape near the oregon idaho border. Jason bingham worked at his fathers accounting business. Stacy was an obstetrics nurse at a nearby hospital. This was the home the binghams loved, and where they imagined they would raise their kids and live for the rest of their lives. Hi hi easter morning. Were really late for church. It takes each one of them to make us a family. You have sierra, compassionate and loving. Megan, who is confident and athletic, and lindsay has been our little jabber jaws. She makes sure everyone stays in and then hunter, who is just a happygolucky 5yearold. Oh, yeah. Full of energy. Just full of energy and life. And then gauge kind of the family clown. We love it. The life of the party. But parties dont last forever, because the Bingham Family was about to become a terrifying medical mystery, one of the strangest, most offthechart, unlikely story we ever heard of. It began in 2006, when sierra, their eldest, threw up for several days. Her parents took her to the doctor. The doctor came in and said we have one of three things. It could be pneumonia, a form of cancer, or something called cardiomyopathy. They gave her an the diagnosis was obvious, Heart Failure. What happens when you hear that . Oh. First youre in a misty fog. Your world came crushing in around you. And then trying to put your mind around it. Grasp it. Its just fear. The doctors put sierra on some heavy medication and sent her home. I remember asking her to come help plant some flowers that would be coming back every year, so if something did happen, i would have some kind of memory of her, but she was too tired or too weak to do it. Sierra was fading fast. Nothing more the regional hospitals near home could do. So, she was flown to Lucille PackardChildrens Hospital in the heart of the silicon valley, a world away from oregons eastern prairie. But even here, there were no easy answers. And the doctors gave jason and stacy the news. Without an almost immediate heart transplant, their daughter it was horrible. When we say it was a nightmare, it was the worst time of our life. Bar none, it was the worst three weeks of my life. The wait for a donor heart for a child can be months. It was time sierra didnt have. To say theres a time when youve shed every tear you can shed, and go home at night completely exhausted, physically, emotionally. We had hit that point. We told as many people as we could, please pray for our little child tonight. 1 30 in the morning, we get a phone call. And i thought, thats it. I thought it was the worst. And the doctors called and they said, we have a heart available for sierra. And i was like, are you serious . The binghams prayers were answered. The next afternoon, sierra it had belonged to a 4yearold boy. In the world of heart transplants, size matters more than age. Sierras new heart would grow as she did. When it came, it just we knew everything was going to be fine. There was just never, ever any doubt. But the binghams wondered why, why did sierras own heart fail . Did they need to worry about their other kids . The doctors assured them the likelihood was extremely remote. But just to be sure, they tested them, and the echocardiograms detected no hint of the disease, and there was no history of Heart Disease at all on either jason or stacys side of the family. So we thought, good. Theyll rule that out. Thats not an issue then. And then came lindsays tummy ache. It was 2012, six years after sierras transplant. Lindsay, the third eldest, vomited at school. We thought, well, it could i think both of us were probably in denial. They took lindsay to the e. R. In nearby baker city where the doctor examined her and then asked jason and stacy about sierra. Cardiomyopathy . And he said yeah, shes got the same thing. She has an enlarged h hrt . I think lost it chlt i couldnt keep my composure, and i remember just sobbing. Lindsay grew so sick so quickly that the very next day, she was flown to Lucille PackardChildrens Hospital, the same place they brought sierra for her heart transplant six years earlier. Now it was impossible not to think there was some genetic link involving their daughters Heart Disease. So, jason brought the rest of the children here, too, for tests. Is it going to hurt . It was on june 8th. It was a friday. It was our dday, i think. Of our five children, all of them either had cardiomyopathy or flaggers or symptoms that they watch that can turn into a cardiomyopathy. Their doctors were as astonished as they were. Even though the electrocardiograms years earlier looked normal, now the bingham children, every single one, would be dealing with the distinct possibility of having a heart transplant just to stay alive. Thats when we first met the binghams. At least in part to make people aware of the desperate need for donors, they agreed to trust us, to allow our cameras to follow them through moments of despair and courage and bottomless love. A journey unlike anything youve ever seen before. Coming up, danger strikes the very youngest. 3yearold gage. Heart block. We need to admit him. And little lindsay . It goes up into here and it goes connects to my heart. Is there hope and a heart for her . Someone out there has a child thats going to save her life. One thing i need to be predictable is to be flake free. Because i have used head and shoulders for 20 years. Used regularly, it removes up to 100 of flakes keeping you protected every week, every month, every year you ready ma . Always life is unpredictable, so embrace it head and shoulders. 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Get your move on. Happy anniversary dinner, darlin can this much love be cleaned by a little bit of dawn ultra . Oh yeah. One bottle has the grease cleaning power of two bottles of this bargain brand. A drop of dawn and grease is gone. Stress sweat. It can happen anytime to anyone. Stress sweat is different than ordinary sweat, it smells worse. Get 4 times the protection against stress sweat. Dont use windex to make windows spotless and clear go see my big fat greek wedding 2 and learn how to use windex the right way on weird stuff not on windows whos got tickets . I do im okay when trouble came to visit the Bingham Family in haines, oregon, it came in bulk. Familiarly size. All five children had markers which means it was in their dna. It could happen any time. At 12, sierra had been living with a transplanted heart for half her life. Now lindsays heart was failing. In june 2012, she was put on the transplant list. To lighten her mood, jason promised to let his beard grow until she got a new heart. She was near death. Her only option, mediate surgery to implant a hightech pump until a heart became available. So its just like a heart transplant, only i wont be getting a heart . The surgery was successful, buying lindsay critical time. Although she was recovering in icu, her parents, who had been through so much, experienced another setback. It was gage this time. Something weird about him. He wasnt acting right. They took him to the emergency room. They said hes in complete heart block. We need to admit him. Doctors were checking him more than they were lindsay that night. I cant imagine what that unbelievable. Now gage, just 3 years old, was rushed into surgery to have a pacemaker implanted. By the end of that awful day, the binghams had two children in postoperative icu. Children are nothing if not resilient. Within two weeks, gage, with his new pacemaker, was up and about. And lindsay, who had been near death, was proudly showing off her clever, mechanical heart. It goes up into here and it goes connects to my heart. And this pumps in the air and this machine helps me. And if it got turned off, they would hook me up to a little thingamajiggy. And what do we do now . An upbeat kid, but naturally you understandabley still afraid. When i stand up, you can feel itumping. Like you feel your heart beating but its on the outside of your body . This is kind of scary. It allows her to feel healthy enough that shes a regular 8yearold girl. She wants to skip and jump and play. Its a false sense of security because you forget she is still on a heart device that is keeping her heart pumping. The rest of the family moved into Ronald Mcdonald house across the street from the hospital. Two bedrooms for all of them. And lindsays siblings enrolled in city school, a world away from anything they had ever known before. My class and grade was 28 kids. Now my grade is 200 kids. Sierra had been where lindsay is now. And in daily visits to the the endless needles and biopsies and the daily terrors of her new life. I was really scared so i asked sierra what it was really like to have a heart. What did she tell you . She told me it was kind of scary at first, but then youre fine. Her siblings worked to build her up. And as jason and stacy waited, mired in their inherently bad luck, a remarkable lightness seemed to carry them through their long draining days, their sleepless nights. They did not complain. They remained upbeat for the kids. And taught them the meaning of gratitude for what they have been given. Do they understand where the hearts come from . Yes, they do. Donor and patient information but messages between the families can be exchanged anonymously through the donor network. So, shortly after sierras transplant, the binghams sent a thank you letter to the donor family. They received a letter back from the grandmother of the 4yearold boy, whose heart now beats in sierras chest. Eternally grateful to his mother and his grandmother, that wrote the letter. And the sacrifices she made to allow sierra to live. Just as youll be eternally grateful to some other family . Yeah. Right now, i pray for that family out there, someone out there in the western United States has a child thats going to save our life. There was, of course, no way to know if or when there would be a heart for lindsay. Jason and stacy were keenly aware that some 50 children die each year, waiting for a heart. And here, as they waited, two seasons changed. Jasons beard grew longer. Back in little haines, oregon, people understood this cost money, lots of money. The binghams have insurance. But it doesnt cover the very expensive multiple medications the kids will need every day for the rest of their lives. Tens of thousands of dollars a year. And so the people of haines put on an auction. They raised nearly 75,000. Occasionally, jason went home to lend a hand on the family cattle drive or pick up clothes for the kids, who were now outgrowing them. Its a lonely place, to be here. I dont know how were going to continue to live here. We want to live here so bad. But, of course, they couldnt go home. Today is labor day. We thought we would give lindsay the chance of labor. They celebrated halloween in thanksgiving, then christmas. Jason and stacy brought an artificial tree into lindsays room. She put on the finishing touch. Her beads of courage. Each bead representing a needle poke, a day in the hospital or procedure shes endured. The string wrapped around the tree three times. But christmas came and went and then valentines day approached. They had been waiting nearly eight months now. What are you looking forward to . Get a new heart. Yeah. And then . Go home. At 6 00 p. M. On february 12th, a doctor pulled stacy out of lindsays room for a chat. Something to tell her. She refused to tell the kids mom. She thinks she knows. She doesnt know anything. I know then, stacy called jason and waited in lindsays room for him he passed the nursing station, alive with excitement. She doesnt know yet. Guess what . I knew it are you ready . Guess what . Youve got to guess. What . Look at that window over there. I have it . You have a heart you do [ screaming ] its going to happen. Its finally going to happen. What was coming next was who could predict such a thing . Coming up, pump up the volume. Lindsays big sendoff to surgery. Okay . But wait. Sierra . Like someone hit me in the gut. Medical roller coaster takes continues. This has to be a dream. This has to be a dream im like, wake up, lindsay. But its not. 8yearold Lindsay Bingham has been waiting for a new heart for 239 days. But now, finally, they have found a match. The next afternoon. Im just scared a little. Really scared. Theyre going to be cutting up my chest andndhen taking out my heart and then putting another one in. The swirl of conflicting emotions, even more so for lindsays parents. Stacy has news she had been dreading to share with jason. Its about their eldest daughter, sierra, who had a routine checkup earlier in the day. Sierra is downstairs. Shes actually how is she doing . Shes actually going to be admitted to the cvicu. Cardiovascular intensive care unit. Demeanor tells you just how grave was the news. I dont know what the deal is. Whats going on . They just said that her pressures are really high and so they wanted to admit her. They dont know if its rejection or Something Else. We have a daughter going in for a transplant in two hours, and a daughter thats been admitted into the icu. I cant tell you how much i need that woman right there. Jason and stacy try to put a positive spin on the news when they tell sierra. So they want to put you in a unit so when they get your biopsy results back, then decide is it rejection or is it Something Else . Great day. Great day. Lindsays going in for a transplant, and youre in the best place you can be right now. And they caught it. One day were going to look back at this and just laugh our but the binghams know exactly how serious rejection can be. If treatment doesnt work, it could mean sierra will go back on the transplant list. Im sick to my stomach, to be honest. Its like someone hit me in the gut. Just because you get the transplant doesnt mean its over. Its just the beginning. In turmoil, pulled in two Different Directions on this day. Jason returns to lindsays room where he and one of lindsays nurses try to keep her upbeat before surgery. Lindsay learns shell get her new heart in the first hours of valentines day. Valentines day yay and, finally, 30 hours after they learned about the donor heart, its time to go. Crank it all the way up. You earned this one. Lindsay chooses her own sound track for her walk to the operating room. Somebody to love. Got chills right now. Seeing her perk up is everything i needed. You mean it. With her baby blanket transformed into a superhero cape, shes ready to face the scariest event of her young life. Jason works to keep lindsays fears at bay. This is where i get the biggest hug in the world. Okay . Ill see you in just a few minutes, all right . All right. What happens in a few minutes . Wake up. You just go to sleep and then you wake right up. And very soon ill get better. Yep. Love you, lindsay lou. Bye, lindsay lindsays room now needs to be made available for the next child in line. So, jason and stacy pack everything up while they wait for the donor heart to arrive. Theyre going to be here in 15 minutes. Hi. You have the heart . Yeah. So, shes a go. Jason and stacy arent prepared for the emotions they feel as they see the donor heart arrive. It really sunk in when you saw that cooler with a human heart on it. You see that nurse head down the hallway to my little princess, who is opened up and ready and waiting for it. Its a strange emotion for observers, too, to watch Life Captured in this small container, passed from one child to another. Even as a third heart struggles, just down the hall. Coming up, precision inside the operating room. And emotion outside. Could two daughters lives be on the line . You want to be happy for the one, but youre feeling so bad and want to cry with the other one. Is that ice cream . It looks like ice cream. Its not. Can i have some . You really wouldnt like it. Its got caramel and crunchy stuff. I like caramel and crunchy stuff. Its not for kids. Im a grownup. Breyers gelato indulgences. Creamy gelato, rich caramel, topped with crunchy curls its way beyond ice cream. Lets get these dayquil liquid gels and go. But these liquid gels are new. Mucinex fastmax. Its the same difference. 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