Dateline | June 05, 2013
>> reporter: she is outside an operating room in palo alto , california. this is the moment of no return, no backing out now, and she is terrified. her name is lindsey lou bingham. she is 9 years old.
>> a group hug .
>> group hug .
>> this is from your mommy.
>> we love you.
>> you can do this! you can do this.
>> it's okay.
>> i know.
>> reporter: she says good-bye to her mother and her father. without this operation to give her a new heart, lindsey will die. with it, well, who knows what will happen?
>> love you, lindsey lou. there she goes.
>> what is happening to the bingham family, jason and stacy and their five children, is like something out of ripley's believe it or not. it is also for all of them an intensely personal and terrifying odyssey. for reasons you'll discover, they've overcome their reluctance and will allow us to be here as witnesses.
>> hi, guys!
>> well, hello, there!
>> they'll even record some of the journey themselves. their defenses, as you will see, are exceptional courage and unshakeable family bond and an abiding desire to go home.
>> hi, easter bunny !
>> once it was all so very ordinary. here they were, a couple of kids off to college in utah, happened to meet one day at church.
>> at first, she didn't think i was all that fancy, but she learned to love me.
>> they had no idea, of course, what would be asked of them. when they got married on a fine june day back in 1997 and moved to the oregon countryside, to the very town where jason was raised, and started a family of their own.
>> how old are you?
>> and what do you have on your birthday plate?
>> a candle.
>> as we had each one, healthy babies, they grow through their little childhood. you know, we had their little worries or concerns as they got bit by a dog or a broken arm or something, but nothing with this magnitude.
>> haines is a dospec in the landscape near the idaho border. here, jason joined has father's accounting business. stacy went to work at a nearby hospital as an an stet ricks nurse. this is the home they loved and where they imagined they'd live for the rest of their lives.
>> santa gave me an umbrella!
>> they say it takes each one of them to make it a family. sierra , who's compassionate and loving, and you have megan, who's confident and athletic, and lindsey 's been our little boss y 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.
>> full of energy and life. and then gage, who's kind of the family clown.
>> we love it. it's just a party.
>> which it certainly was in may 2012 . the kids would soon be out of school for the summer. that's when lindsey began to complain about stomach aches . her doctor thought it might just be constipation or asthma acting up. but then she got worse. her face and belly swelled. she had trouble breathing. so, jason and stacy took her to the hospital where stacy worked in nearby baker city .
>> we took her into the e.r. and said, can you do a chest x-ray just because, you know, she's having this difficulty breathing and all this swelling. and we were sitting there reading and --
>> we just thought please, please, oh, please, have a normal chest x-ray, have a normal x-ray, please. we'll take anything, you know? we'll try to handle something else. i don't want to go down that road again.
>> did he say down that road "again"?
>> then the doctor walked back in.
>> he said tell me more about sierra .
>> sierra ? yes. sierra is the binghams' first-born, and at that very moment, right there in the emergency room , the binghams descended into a terrifying place, a place they knew all too well.
>> surely, no family would have to go through what we went through with sierra again.
>> the incredible, terrible journey that began here at the country paradise the binghams loved so well did not start with lindsey 's stomach ache . no, it was six years before that, may 2006 . the binghams had three children back then. stacy was pregnant with number four, and 6-year-old sierra was at a t- ball game in town, just across the fields over there. she threw up at the game and kept throwing up at school for the next few days, said she felt cold and tired all the time. so, the binghammed tosk so, the binghammed t took her to the doctor who gave her a chest x-ray.
>> the doctor comes in and says you have one of three things here. it could be a pneumonia, a form of cancer or something called cardiomyopathy.
>> the doctor told jason and stacy to take sierra to see a cardiologist in boise, the nearest big city , immediately. the doctor there ordered an echocardiogram.
>> and then you hear him go off and make a few phone calls , the technician guy, and he was talking about this kid, another kid that was really super sick and said you need to go to intensive care . and we're thinking, wow that kid's really sick. glad that's not us.
>> and then the technician came back and they understood.
>> that kid was ours.
>> they rushed sierra to intensive care . the diagnosis, dilated cardiomyopathy , heart failure . what happens when you hear a thing like that.
>> oh. well, first, you're in a misty fog, kind of like your world just came crashing in around you. and then just trying to put your mind around it, grasp it, just fear.
>> sierra was hospitalized for two rocky weeks then sent home with medications the doctors hoped would help her, but she only got worse.
>> i remember asking her to come help plant some flowers that would be coming back every year, so that if something did happen, i'd have some kind of memory of her, but she was too tired or too weak to do it.
>> five days after the fourth of july, sierra was life-flighted to lucile packard hospital where doctors gave stacy and jason the news. without an almost immediate heart transplant , 6-year-old sierra would die.
>> 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 can be months, time sierra didn't have, unless an experimental child-sized heart pump could be flown in from berlin, germany.
>> it would take five days to get here, which we knew she wasn't going to make the five days. to say there's a time when you've 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 and asked, please pray for our little child tonight. at 1:30 in the morning, we got a phone call . i thought, that's it.
>> but jason was wrong. that wasn't it. the unbelievable journey and the test of them as parents had just begun.