there's a time when you have shed every tear you can shed and go home at night completely exhausted, physically, emotionally. we hit that point. >> it's going to change everything about our life. everything. >> they're young parents, fighting an enemy within. >> your emotions are on a roller coaster. >> a frightening condition that threatens the lives of all five of their children. >> that connects to my heart. >> it's possible each one may need a new heart just to survive. >> you get that feeling like

>> it's pretty hard. >> tonight, the latest in their battle. breakthroughs, setbacks. >> just got to prepare myself that things could change. >> all fueled by fate, love, humor and amazing grace. >> i never felt why us. >> what will it take to save a life? >> it's time to start thinking about transplant. story. >> guess what. you have a heart! [ screaming ] >> you won't forget their courage. join them "where the heart is." >> welcome to "dateline," everyone. i'm lester holt. imagine, five children in the same family, all with signs of a deadly heart disease. we've been following their story for years now. and, as you watch, put yourself in their parents' shoes.

are? here is keith morrison. >> when jason bingham thinks of home, what he sees in his mind's eye, it's as much a part of him as breathing, as his own heart. >> it's god's country. you can't see any neighbors as far as you can see. >> faithful horse, good dog and sturdy truck is about all he needed out here. until he met her. what happened when jason met stacy was -- well, love, brand new, unique. but for them, way out here in god country, it truly was.

grand sweeping landscape near the oregon/idaho border. jason bingham worked at his father's 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. we're 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 line and then hunter, who is just a happy-go-lucky 5-year-old. >> oh, yeah. >> full of energy. >> just full of energy and life.

>> we love it. the life of the party. >> but parties don't last forever because the bingham family was about to become a terrifying medical mystery, one of the strangest, most off-the-chart, 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, form of cancer or something called cardiomyopathy. >> they gave her a cardio cardioechogram. the diagnosis was obvious, heart failure. what happens when you hear that? >> oh. >> first you're in a misty fog. your world came crushing in around you. and then trying to put your mind around it. grasp it. it's just fear. >> the doctors put sierra on some heavy medication and sent

>> 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 home could do. so, she was flown to lucille packard children's hospital in the heart of the silicon valley,rom oregon's eastern prairie. but even here, there were no easy answers. and the doctors gave jason and . without an almost immediate heart transplant, their daughter would die. when we say it was a nightmare, it was the worlife. bar none, it was the worst three weeks of my life. >> the wait for a donor heart for a child can be months.erra didn't have.

you've shed every tear you can ed and go home at night completely exhausted, physically, emotionally.t. >> we told as many people as we or our little child tonight. 1:30 in the morning, we get a phone call.s it. >> i thought it was the worst. and the doctors called and they said, we have a heart available for sierra.d i was like, are you serious? >> the binghams' prayers were answered. the next afternoon, sierra received her new heart.d to a 4-year-old boy. in the world of heart transplants, size matters more than age.ould grow as she did. >> when it came, it just -- we knew everything was going to be fine. never, ever any doubt. >> but the binghams wondered why, why did sierra's own heart

their other kids? the doctors assured them the mely remote. but just to be sure, they tested them and echocardiograms the disease and there was no history of heart disease at all on either jason or stacy's side of the family. od. they'll rule that out. that's not an issue then. hen came lindsay's tummy ache. it was 2012, six years after sierra's transplant. lindsay, the third eldest, >> we thought, well, it could not be the same. i think both of us were probably in denial. ok lindsay to the e.r. in nearby baker city where the doctor examined her and then d stacy about sierra. >> cardiomyopathy?'s got the same thing.

>> yeah. i lost it.posure and i remember just sobbing. >> lindsay grew so sick so quickly that the very next day, flown to lucille packard children's hospital, the same place they brought sierra for her heart transplant six years now it was impossible not to think there was some genetic link involving their daughter's heart disease. of the children here, too, for tests. >> is it going to hurt?8th. it was a friday. it was our d-day, i think. we sat down and were told that of our five children, all of d cardiomyopathy or flaggers or symptoms that turn into a cardiomyopathy. >> their doctors were as astonished as they were.ugh the electrocardiograms years earlier

children, every single one, h the distinct possibility of having a heart transplant just to stay alive. that's when we first met the binghams.rt to make people aware of the desperate need for donors, they agreed to trust us, to allow our cameras to follow em through moments of despair and courage and bottomless love. >> we'll be righe. >> the journey unlike everything you've seen before.r strikes the very youngest. 3-year-old gage. >> they said he's in complete heart block.it him. >> and little lindsay? >> it goes up into here and it goes -- connects to my heart. pe and a heart for her? >> someone out there has a child that's going to save her life. hild that's going to save her life. it's ridiculously powerful... ter.

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became available. >> so it's just like a heart transplant only i won't be >> the surgery was successful, buying lindsay critical time. although she was recovering in d been through so much, experienced another setback. it was gage this time. about him. >> they took him to the emergency room. >> they said he's in complete heart block.it him. >> doctors were checking him more than they were lindsay that night. >> i can't imagine what that would do to you. >> now gage, just 3 years old, was rushed into surgery to have anted. by the end of that awful day, the binghams had two children in post-operative icu.othing if not resilient. within two weeks, gage, with his

death, was proudly showing off . >> it goes up into here and it ts to my heart. and this pumps in the air and e. and if it got turned off, they uld hook me up to a little thing-a-majigy. >> and what do we do now? >> wait for a heart. id but naturally one who is still afraid. >> nisty little heart. feel like? >> when i stand up, you can feel it pumping. >> like you feel your s on the outside of your body? >> this is kind of scary. >> it allows her to feel healthye's a regular 8-year-old girl. she wants to skip and jump and

it's a false sense of security he is still on a heart device that is keeping her heart pumping. >> the rest of the family moved into ronald mcdonald house om the hospital. two bedrooms for all of them. and lindsay's siblings enrolled , a world away from anything they had ever known before. e was 28 kids. now my grade is 200 kids. here lindsay is now. and in daily visits to the hospital, offered advice about edles and biopsies and the daily terrors of her new life. >> i was really scared so i was really like to have a heart. >> what did she tell you? >> she told me it was kind of scary at first, but then you're fine.

her up.d as jason and stacy waited, mired in their inherently bad luck, a remarkable lightness seemed to carry them through ining days, their sleepless nights. they did not complain. they remained upbeat for the kids.m the meaning of gratitude for what they have been given. do they understand where the ? >> yes, they do. >> donor and patient information is kept strictly confidential, but messages between the e exchanged anonymously through the donor network. so, shortly after sierra's transplant, the binghams sent a er to the donor family. they received a letter back from the grandmother of the 4-year-old boy, whose heart now st. >> eternally grateful to his mother and his grandmother, that wrote the letter.sacrifices she made to

>> just as you'll be eternally grateful to some other family? >> yeah.w, i pray for that family out there, someone out there in the western united states has a child that's going fe. >> there was, of course, no way to know if or when there would be a heart for lindsay.y were keenly aware that some 50 children die each year, waiting for a heart.d here, as they waited, two months passed and then three. seasons changed.grew longer. back in little hains, oregon, people understood this cost money, lots of money.surance. but it doesn't cover the very expensive multiple medications the kids will need every day forves. tens of thousands of dollars a year.

on an auction.ey raised nearly $75,000. occasionally, jason went home to lend a hand on the family cattle drive or pick up clothes for the now outgrowing them. >> it's a lonely place, to be here. i don't know how we're going to e. we want to live here so bad. >> b go home. >> today is labor day. we thought we would give lindsay the chance of labor. alloween in the hospital, followed by tmas. jason and stacy brought an artificial tree into lindsay's room.hing touch. her beads of courage. each bead representing a needle the string wrapped around the tree three times. but christmas came and went and approached.

eight months now. ing forward to? >> get a new heart. >> yeah. and then? >> go home. at 6:00 pm on february 12th, a doctor pulled stacy out of lindsay's room for a chat. something to tell her. what she was told. >> mom. >> she thinks she knows. she doesn't know anything. >> i know!n, stacy called jason and waited in lindsay's room for him to arrive. he passed the nursing station, alive with excitement. she doesn't know yet. >> guess what. >> i knew it! you've got to guess. >> look at that window over there.

>> you have a heart!g ] >> it's going to happen. it's finally going to happen. who could predict such a thing? ch a thing? asi .send-off to surgery. >> this is where i get the biggest hug in the world. okay? >> but wait. sierra?e hit me in the gut. >> medical roller coaster takes another dip when "dateline" continues. continues. r seven. i am the butler.like crazy. it's like being inside of a snow globe. it takes an awful lot of time to keep the house clean. i don't know what to do.l) what's this? swiffer sweeper and dusters.

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this has to be a dream. this has to be a dream! i'm like, wake up, lindsay. wake up!ot. >> 8-year-old lindsay bingham has been waiting for a new heart for 239 days.ly, they have found a match. the doctors scheduled thursday the next afternoon. ared a little. really scared. they're going to be cutting up chest and then taking out my heart and then putting another one in. >> the swirl of conflicting emotions, even more so for lindsay's parents.s news she had been dreading to share with jason. it's about their eldest da daughter, sierra, who had a routine checkup earlier in the day. >> sierra is downstairs.

>> how is she doing? actually going to be admitted to the cbicu. tensive care unit. sudden change in jason's demeanor tells you just how grave was the news. the deal is. what's going on? >> they just said that her pressures are really high and soey wanted to admit her. they don't know if it's rejection or something else. >> we have a daughter going in o hours and a daughter that's been u. i can't tell you how much i needre. >> jason and stacy try to put a positive spin on the news when they tell sierra. ut you in a unit so when they get your then decide is it rejection or is it something else?

>> great day.or a transplant and you're in the best place you can be right now. >> and they caught it. >> one day we're going to look nd just laugh our heads off. >> but the binghams know exactly how serious rejection can be. if treatment doesn't work, it ll go back on the transplant list. >> i'm sick to my stomach, to be honest.t me in the gut. just because you get the transplant doesn't mean it's over. it's just the beginning. pulled in two different directions on this day. jason returns to lindsay's room where he and one of lindsay's keep her upbeat before surgery. lindsay learns she'll get her new heart in the first hours of valentine's day. tine's day! >> yay! >> and, finally, 30 hours after they learned about the donor me to go. >> crank it all the way up. you earned this one. >> lindsay chooses her own sound

operating room.y to love." >> got chills right now. seeing her perk up is everything i needed.d you, like you mean it. >> with her baby blanket transformed into a superhero ady to face the scariest event of her young life. jason works to keep lindsay's bay. >> this is where i get the biggest hug in the world. okay? a few minutes, all right? >> all right. >> what happens in a few minutes? >> wake up. o sleep and then you wake right up. >> and very soon i'll get better. >> yep.say lou. >> bye, lindsay! >> lindsay's room now needs to be made available for the next child in line.stacy pack everything up while they wait

15 minutes. >> hi. >> yeah. >> her chest is open right now. so, she's a go. >> jason and stacy aren't he emotions they feel as they see the donor heart arrive. >> it really sunk in when you r with a human heart on it. you see that nurse head down the hallway to my little princess, up and ready and waiting for it. >> it's a strange emotion for observers, too, to watch life is small container, passed from one child to another. even as a third heart struggles,n the hall. coming up, precision inside the operating room.ion outside. could two daughters' lives be on the line? >> you want to be happy for the one, but you're feeling so bad and want to cry with the other

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i'll see you in just a few minutes, all right? >> all right. ingham is in an operating room where surgeons are replacing her failing heart while her parents receive e night and

>> things are looking good. >> this doctor, though, after reporting in about lindsay, onversation to sierra. >> so i would like to regroup with the whole team and talk over things and see if we can effective long-term strategy for her. >> i just need to hear you say we have opgs. >> there are options to look into. sation, mind you, is taking place while lindsay is still in surgery, while doctors stitch together five separate gin with the new heart outside lindsay's body, then finish up once it's slipped inside.not beaten since it was taken from the donor nearly four hours earlier. the next step is crucial.use a defibrillator to spark lindsay's new heart back to life. >> 10. egins to pump. and soon finds its rhythm. >> it took a couple of hours ed, but everything went very, very

>> but the binghams now have twohe cardiovascular icu. sierra's biopsy results show antibodies are attacking her heart and already have caused some damage.he binghams they'll try a treatment called plasma phoresis in which they e harmful antibodies from her blood. it sometimes works, sometimes doesn't. there's a chance that, to ll one day need a second heart transplant. >> the reality of it is it's . there's always going to be something. and now that always something ismes two, you know. it was really hard. you just felt like your emotions are on a roller coaster and you or the one, but you're feeling so bad and want to cry with the other one. >> and, of course, there's ho has the same

pacemaker at age 4.y do their own form of triage, focusing on the sickest child. for now, that's lindsay. ere now. megan's here. so is gage. >> days after a heart trans plant are, of course, critical.say's first few bring complications. but soon she is up and walking without an artificial heart pumptime in eight months and jason keeps a promiseay cut off the straggly beard he started growing the day she was placed on the transplant list. >> do it. ndsay, lindsay! >> whoo! >> there you go. >> two weeks after getting her new heart, lindsay is ready to leave the hospital. dy to go? >> oh, yeah. >> she's out of here. >> good luck. you. just down the street to ronald

lindsay and sierra are cleared hey so desperately want. the one back home. but first, another biopsy, to tment stopped or at least slowed the rejection.aniel bernstein will make the call. >> i think things are going being in your home and see how things go the next couple of years. if things quiet down, no you are. >> okay. >> words the binghams wondered if they would ever hear again.l they've been through, they are grateful. >> we've walked away twice now with two children still alive, e than some parents can say that have to leave here. and we can go home with five children. lmost surreal celebration that day in 2013, as

forced to retreat outside their ble of happy. there was a long drive home to hains, oregon.come from just about the whole town. >> how are you? good to see you. a, overjoyed to see her own bed. and lindsay, the trampoline. just a regular kid again. so, are you letting yourself we go there? >> we have a new norm now. to think it's over now is just the beginning. >> the family, though, was ranch and the binghams settled gratefully into their new normal. jason and stacy knew would be no more permanent than a sun set. coming up, a setback for sierra. t thinking about transplant number two. >> oh, my goodness.

going to end. er second family. her heart donor family. >> tell us about nicholas. >> when "dateline" continues. >> when "dateline" continues. big news! the new sprint lte plus network verizon and at&t. to celebrate, we're gonna cut some prices in half. switch to sprint and save 50% on verizon, or t-mobile rates. so start the new year off right and switch today. if you're looking to save money on yourt d prescriptions, walgreens says, carpe med diem. seize the day to get more out

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the binghams have settled into their new normal, a life e controlled chaos of raising five children, two of whom have transplanted hearts o has a pacemaker. two years have gone by. years during which they've managed to stay here in rural oregon, far from the hospital, ome they love so much. lindsay is now off the anti-rejection steroid that caused her face to swell and has braces on her teeth. sierra is in high school, learning to drive.e the trek to palo alto every few months for checks and biopsies which lindsay actually looks forward to. the girls' most loyal cheerleader. but on this trip to the hospital, january 2015, she is uneasy. anxiety over this one. is it just going to be simple or

we're not prepared for?f it. >> sierra has had some swelling at won't go away. >> all those tubes filled up? that is a lot. >> the girls go in. the procedure that once frightened lindsay has become old hat. m not crying. >> your pressures are good. >> here you go, honey. >> lindsay's transplanted heart is working beautifully.. but what about sierra's? >> after this, baby girl, there of pushing, okay? >> she has been fighting rejection for several years now. >> the real question, to be don't mean to jump on you, is whether or not it's time to think about transplant number two. ng was right. sierra's condition has worsened. s, they've run out of options to fight the antibodies that are attacking her heart. up again.

>> yes. >> how many kids, how many times? you get that feeling of it's never going to end. it's just on repeat. >> yeah. >> transplanted hearts, for ly understand, don't last forever. if you're an older prn er er person who is you may be able to live out the natural duration of your life before your transplan we didn't transplant sierra at age of 7 to get her to tenth grade. give her a nice, long life. >> so, sierra goes back on the transplant waiting list. the wait could be much longer s two years. because of her condition an artificial heart pump is not an option. hear, in typical bingham form, stacy finds a bright side. ul for the breaks we get.

that breath of fresh air b hits. >> a month later, the binghams are back at the hospital to learn more about what's next for sierra.e along for a pace maker adjustment. >> ready for mr. turtle? >> at the age of 6, he has had ayears now. sierra was about gage's age when she had her first heart transplant. she's 15, she has a say in her own health care. even can say no, if she decides she doesn't want a second transplant. she has asked her parents not to secrets from her about what's ahead. no matter how scary. and scary, it certainly is. le of the night, keep checking to make sure she has a pulse because she's going to die in the middle of the night. i get scared to death that she won't be there in the morning. ct, sierra's condition deteriorates quickly and, soon, she and stacy are back in palo alto, to wait close to the hospital for a donor heart. life as normal as

extraordinary circumstances.at the hospital, with another patient. and then, out of the blue, the e-mail from the grandmother of sierra's first donor. a woman who saw our first report in 2013 and had a feeling that it was her grandson's heart that saved bingham binghams' blog, she knew she was right. his name was nicholas. now she has learned that heart, beating in sierra's chest, is failing. and she and her family, including nicholas' brother and o meet sierra. they meet in a park not far from the hospital. >> this is sierra. >> hi, sierra. >> how are you? >> sierra brings a stethoscope

heart one last time.e family sierra's first reaction when she learned she would need a new heart was n't keep nicholas' heart alive longer. >> it's just something that happens and we don't know why. know that we do value that heart in the nine years she has had it. >> tell us about nicholas. >> well -- >> the binghams had assumed n accident. but now they learned the horrifying truth. nicholas was murdered by his ther. his organs went to sierra and two other children. >> it's been easier on us, that he was able to help three others, three people. not just sierra. us a lot.

>> they take pictures together, and then, just three weeks later, just like that, the wait is over. available. much sooner than anyone expected. before she goes in for her second transplant, a reminder of her medical condition, sierra is a regular teenager.m an admirer. >> we've seen this hall before, haven't we, dear? >> minutes later, more good-byesoors they've been to before and will be again. >> love you, too, gage. nd stacy, another long night of waiting and worrying.perating room door revolves again. sierra out of suhis? little gage heading in? >> to think that he walked in here a happy little kid, it's pretty hard.

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she 15 years old sierra bingham about

rapidly anyoneexpected. >> i was really getting hing to see kid plummet and then how close are e surgeons remove3 f2 ahora los cirujanos remueven el 3 f2 ahora los cirujanos remueven el it's the middle of the night. it's the middle of jason and stacy have been waiting for news. acy have been >> it's a long night >> yeah. >> good. >> good. so, have a seat. so, have a seat. everything went well, very smoothly. >> a healthy heart is beating in sierra's chest. is beating in sierra's chest. she has been given a fresh start she has been given a fresh start her young a second time in her young life. life.very goes unbelievably smoothly. recovery goes unbelievably smoothly. >> cvicu, we're out of here. >> c

we're headed home, baby. eleased from the hospital in record time.d from the hospital after just eight days. she's already thinking about iy thinking about what she will do with this next chapter. at she will do with this next chapter. ttle simple >> just doing the little simple things in life, like going to things in life, like going to the beach, hanging out with friends.the beach, hanging out with friends. church and stuff. >> she and stacy plan to spend auff. >> she and stacy plan to spend a brief stint at the nearby ronald brief stint at the nearby ronald mcdonald house and then surprimily by returning home a week earlier mily by returning home a than expected. w w than expected. but another shoe was about to drop. but another shoe was about to drop.sked to speak to as a jason and stacy. sk jason and stacy. >> your heart just sinks a >> your heart just sinks a little bit like, why? little bit like, why? us to a barbecue. it's not to invite us to a barbecue. >> in checking gage's pacemaker, >> in checking gage's pacemaker, doctors have discovered gage has doctors have discovered gage has night had two episodes in the night where his heart flutters rather where his heart flutters rather than beats. than beats. either one of them could have been fatal. been fatal.ure is worsening. his heart failure is worsening. in addition to the pacemaker he in addition to the pacemaker he already has, he will need to has, he will need to implanted

to shock his heart back into rhythm if it flutters again. rhythm if it flutters again. but jason is worried that g a. but jason is worried that g a.e transplant list. is headed to the transplant list. >> we've seen what happens and ns and maybe we know too much. >> yeah. ch. >> yeah. ot ready -- i'm ready to go home a little bit and not ready to go home a little bit and not stay here for another year or two.o.stay here for another year or two. as good as he's doing, i just as good as he's doing, i just lf that have to prepare myself that things could change. things could change. >> jason and stacy have had no >> jason and stacy have had no from sierra's time to recover from sierra's transplant, no time to recharge before this next crisis. before this next crisis. emotionally exhausted. they are emotionally exhausted. ned jason and stacy that there's a chance and stacy that there's a chance gage could come out of surgery gage could come out of surgery al heart pump on an artificial heart pump on. similar to the one lindsay was it would mean he could not leave mean he could not leave the hospital u could be found. nt

>> to think that he walked in here, a happy little kid, with here, a happy little kid, with his little bear and to think he his little bear and to ld get might come out or we could get the call any second now that the call any second now that t him on a heart they had t device device device, it's pretty hard. device, it's pretty hard.ery goes well. >> but gage's surgery goes well. no artificial heart pump necessary.no artificial heart pump necessary. and, finally, they get to go home. and, fin home. the hardware inside gag's tiny the hardware inside gag's tiny chest regulates the beat of his heart.est regulates the beat of his progression ofofe progression of his heart disease, which is happening much faster than much faster than anyone anticipated. l siempre deci a que no cuando t tired after throwing up, he knew it was time. >> he sa id you're right one

i said right about what? a heart. it's time. i think in his way, he was accepting the reality of it. it's heartwrenching. months after his last surgery, gage is back at the hospital to have an p implanted in his tiny chest. he is asked if it's okay for doctors to remove a small piece o they can study what's causing his and his siblings' heart disease. and then it's yet another de the o.r. a place the binghams know all too well. >> you be brave, okay? you're a brave boy. y bear, woody, goes in with him. surgery goes smoothly. is back on his feet. the equipment that's keeping him alive is far more portable than lindsay's was.is back. and, once again, all the

gage to get his new heart. in the meantimestions. >> what does it feel like to have a brand new heart? >> you'll feel so much better.how sierra and lindsay are. how they are right now. that's how you'll feel. e fourth transplant for this young family. their eighth open heart surgery.ed so many times in the years we've followed them, how do they keep going? >> you have a heart! >> you do! >> aren't they resentful? don't they feel sorry for themselves?why us. but the binghams, not for a moment. felt, why us. i feel like we've been g

and if we succeeded and they are