Dateline | June 05, 2013
>> when trouble came to visit the bingham family of haines , oregon, they came in bulk, family size . all five of their children had cardiomyopathy or markers for the disease, meaning it was in their dna, it could happen any time. sierra , now 12 years old, had been living with a transplanted heart for years, and now 8-year-old lindsey 's heart was failing. on june 20th , 2012 , lindsey was put on the list for a heart transplant , and that very day, jason told her she would grow a beard until she got a new heart.
>> i don't care how long it takes, as long as she hangs around, i'm hanging around.
>> the average wait for a donor heart for a child is three months, but doctors warned the binghams it could be much longer. so, jason took the other four kids home to haines , an effort to keep life as normal as possible while they waited. but it wasn't normal and it didn't last. a week and a half after going on the transplant list, lindsey 's heart could no longer sustain her. she needed that child-sized artificial heart pump called the berlin heart right away. jason flew back to palo alto .
>> so, he happened to bring gage with him.
>> there was something weird about him. he wasn't acting right.
>> stacy checked his blood pressure and pulse. they were incredibly low. they took him to the hospital.
>> they asked to go down to the e.r. to do the ekg there, and they said, he's in complete heart block . we need to admit him.
>> at the age of 3, gage urgently needed a pacemaker. so, now there were three. gauge received his pacemaker and quickly rallied. here you can see the signs of the surgery lindsey had to implant her berlin heart pump, this remarkable little device that circulates her blood. it connects through her abdomen to her heart. this massive cart rolls alongside lindsey wherever she goes.
>> my berlin pumps and it goes up into here and it goes to connect to my heart, and this pump is the air, and this machine helps me. and if it got turned off, they'd hook me up to a little thinga ma thingamajiggy, whatever it is, a pump.
>> a fancy bicycle pump . so, what are we going to do now?
>> wait until a heart comes, right?
>> let's take a look. lie back.
>> but now the need for a heart had added urgency. how long could the heart pump hold out? hard to know. and because it's artificial, it threw off little blood clots , which kept everybody watching, tense, on edge. the family moved into the ronald mcdonald house in stanford, two bedrooms for all of them. and they enrolled in city schools, a world away from anything they had ever known.
>> my class and grade was 28 kids. and so, now my grade is 200 kids.
>> but sierra had been where lindsey was, and in daily visits to the hospital, offered advice about the endless needles and biopsies, 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'd she tell you?
>> she told me it was kind of scary at first, but then it's, you're fine.
>> her siblings work to build her up. and as jason and stacy waited, mired here in their impossibly bad luck , a remarkable lightness seemed to carry them through their long, draining days, their terrifying 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 their hearts come from?
>> yes, they do. sierra 's, we wrote a letter to the family as soon as we received the heart transplant , because we can't imagine that it really is a two-edged sword when they receive that, because you know what it meant. and as much as we love our child and want them to live, i can't imagine the grief that they have to deal with because they actually had to lose theirs.
>> they received a letter back from the grandmother of the 2-year-old boy whose heart now beats in sierra 's chest.
>> we're eternally grateful to his mother and his grandmother that wrote the letter and to the sacrifices she made to allow sierra to live.
>> just as you'll 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 and the child that's going to save her life.
>> there was no way, of course, to know if or when there would be a heart for lindsey . jason and stacy were keenly aware that some 50 children die each year waiting for one. in fact, this is why they've let us witness their personal drama, to help the world understand the desperate need for donors. and here, as they waited, two months passed, and then three. jason 's beard grew longer, seasons changed. back in little haines , oregon, people understood that all this costs money, lots of money. the binghams have insurance, but it doesn't 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. and still, they waited.
>> one, two, three.
>> occasionally, jason went home to help with the family cattle drive or pick up clothes for the kids who were now out-growing them.
>> it's a lonely place to be here. i don't know how we're going to continue to live here. we want to live here so bad. today's labor day , so we thought we'd give lindsey a chance to labor.
>> but of course, they couldn't go home.
>> there you go.
>> they celebrated halloween in the hospital, then thanksgiving. six months past.
>> i knew we're one day closer.
>> how is that heart working that berlin heart? seems to be pretty amazing.
>> she's doing really good.
>> this berlin has allowed her to feel healthy enough that she's the regular 8-year-old girl. she wants to skip and jump and play. it's a false sense of security, because you forget, she is still on a heart device that is keeping her heart pumping.
>> what are you looking forward to, then?
>> get a new heart.
>> yeah, and then?
>> i want to go home.
>> but for now, christmas is coming . the nurses claim they've seen santa sneaking through the hospital.
>> he kind of walks in secretly and that he goes out fast, like.
>> jason and stacy brought an artificial tree into lindsey 's room. she put on the finishing touch, her beads of courage. each bead representing a needle poke, a day in the hospital or a procedure she has endured. but christmas came and went. the wait was becoming unbearably long.
>> i can't go outside when it's raining or snowing, so it's hard to try to stay in here, when i can't. it's like.
>> valentine's day approached. they had been waiting nearly eight months now. and then, at 6:00 p.m . on february 12th , the doctor pulled stacy out of lindsey 's room for a chat. he had something to tell her. she refused to tell the kids what she was told.
>> because i know the secret now, mom.
>> sierra thinks she knows. she doesn't know anything.
>> i know!
>> then stacy called jason and waited in lindsey 's room for him to arrive. he passed the nursing station, alive with excitement.
>> she doesn't know yet. guess what?
>> i knew it!
>> are you ready?