Dateline | June 05, 2013
>>> it was 1:30 in the morning, their daughter sierra struggling for life in the icu. jason and stacy bingham, roused from restless half sleep dove to pick up the phone .
>> we thought that was the worst. and the doctors called and said we have a heart for sierra . and i was like, are you serious?
>> the next afternoon, sierra received a donor heart. it had belonged to a 2-year-old boy. in the world of heart transplants, size matters more than age. sierra 's new heart would grow as she did.
>> i think when it came, it just, we knew everything was going to be fine. there was just never any doubt.
>> but it wasn't easy. there were months of recovery and then the regular, invasive, and often painful monitoring against the possibility her new heart would be rejected, a threat she would always face. though, barring rejection, sierra 's life should be normal. but the binghams wondered, why, why did sierra 's own heart fail? do they need to worry about their other kids? not to mention the ones they still hoped to have? at the time, their doctors assured them, no. after all, neither jason nor stacy , nor anyone in their family tree , had the disease.
>> all megan and lindsey that were younger at the time than us had echocardiograms done just to make sure there were no signs of any enlargement of the heart or anything. and then both hunter and gage after they were born, we had them do echoes as well, just for my peace of mind , and they all came out normal. so, we thought, good, rule that out. that's not an issue then.
>> and so, when six years after sierra 's transplant lindsey complained of a tummy ache --
>> we thought, well, it could not be the same. i think both of us were probably in denial.
>> and that's when they took lindsey to that emergency room in baker city and the doctor asked the binghams to tell him more about sierra .
>> we said, well, she had dilated cardiomyopathy . and he said, yes, she's got the same thing, and --
>> she's got an enlarged heart .
>> yeah. i think i lost it. i couldn't keep my composure. and i remember just sobbing. she says, i don't want a transplant is the first thing lindsey said.
>> i don't want a transplant. my tummy doesn't hurt anymore. it's okay.
>> it's okay.
>> she could see the fear in us, and i feel bad that she saw that. that really scared her.
>> you're still letting her see that after --
>> that was the last time she saw it.
>> the next day, lindsey was flown to lucile packard children's hospital in palo alto , california, the very 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 june 8th . it was a friday. it was our d-day, i think. we were sat down and told that of our five children that all of them either had cardiomyopathy or had flaggers or symptoms that they watched that can turn into a cardiomyopathy.
>> the cardiologist, dr. daniel bernstein , was as astonished as they were. even though their echocardiograms years earlier had looked normal, now all the bingham children, every single one, would be confronted with a distinct possibility of one day requiring a heart transplant just to stay alive. because of that deadly condition many people have never heard of, dilated cardiomyopathy .
>> a dozen years ago, we'd use the word ideopathic, which means unknown cause, but i think it really means we don't know yet.
>> genetic testing is a rapidly developing science, but even now, it cannot tell the binghams why, why their children have heart disease or where it came from.
>> there were standard tests that can done. in 50% of the cases, we don't find anything. that doesn't mean there isn't a genetic cause. it just means that we haven't yet identified that gene.
>> jason and stacy were devastated. it was not a fluke that one child needed a heart transplant , not near coincidence that a second was now facing one, and in fact, it was about to get even worse . jason and stacy noticed there was something not