Survivors Of Childhood Disease Face Health Risks As Adults : Shots - Health News A few decades ago, babies born with conditions such as congenital heart disease or cystic fibrosis often didn't survive past childhood. Now many live longer, but adult medicine has not kept pace.
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Survivors Of Childhood Diseases Struggle To Find Care As Adults

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Survivors Of Childhood Diseases Struggle To Find Care As Adults

Survivors Of Childhood Diseases Struggle To Find Care As Adults

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  • <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
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It wasn't so long ago that a diagnosis of congenital heart disease in a newborn baby was a death sentence. But in recent decades, dramatic improvements in medical care have meant that many patients with that disease live well into adulthood. A bit of good news that also creates new challenges for the health care system. Here's Kerry Klein of Valley Public Radio in Fresno.

KERRY KLEIN, BYLINE: Rachael Goldring is 24, and she's getting married in October.

RACHAEL GOLDRING: It's a princess dress, and it's strapless, and it looks as if it's floating on air when I put it on.

KLEIN: Marriage - it's huge. But Goldring has a lot to be excited about.

GOLDRING: I just celebrated my one-year anniversary of staying out of the hospital for the first time since birth. So this year, it's been - knock on wood (laughter) - it's been amazing.

KLEIN: But she fears it might not last. Right now she's in limbo between pediatric and adult medical care. For Goldring, finding a good doctor could be a matter of life and death. She was born without a pulmonary valve directing blood from her heart to her lungs.

GOLDRING: I had my first surgery when I was 9 months.

KLEIN: She spent her life in and out of doctors' offices and operating rooms.

GOLDRING: I've been on drugs, off of drugs, on drugs, detoxing drugs, in the hospital, getting new diagnoses.

KLEIN: Today, congenital heart disease survivors can live well past childhood. Pediatrician Patrick Burke at Valley Children's Hospital in Madera says other once-fatal ailments, like sickle cell disease and spina bifida, have undergone similar advances.

PATRICK BURKE: This is the so-called medical miracle promised to our parents and grandparents.

KLEIN: But now, Burke says, miracle kids like Goldring grow up to be complicated adults.

BURKE: There is an irony to the medical miracle.

KLEIN: Diseases that used to be exclusively pediatric are now the realm of adult doctors.

BURKE: The job's not done after the surgery or the initial treatment. Many, if not most, of these conditions require ongoing medical care - lifelong medical care.

KLEIN: Burke is in charge of a brand-new program at his hospital and so-called transitional care. He says many conditions worsen around the age of 18, right as children age out of pediatric care. For instance, he says, that's when patients with congenital heart disease can suffer complications with their blood and organs. The trend is particularly stark for cystic fibrosis.

BURKE: We're seeing this spike of deaths that are happening in the early 20s, and it's bizarre.

KLEIN: Now, with more adults living with some of these diseases than kids, medical training lags behind. Young adults who can't find suitable doctors may drop out of care.

BURKE: It goes downhill from there. Why does it have to be this way?

MEGUMI OKUMURA: As people talk across the nation, they're all having the same issue. Oh, my goodness, you know, we're having, like, this, you know, increasing morbidity in this age group.

KLEIN: That's Dr. Megumi Okumura of UC San Francisco, and she's speaking via Skype. She became interested in transitions during her residency in the early 2000s. She would see 40- and 50-year-olds in pediatric wards. The reason, she says, partly lies with our fragmented health care system.

OKUMURA: They are transferring from differing systems of care that's artificially created in our system. You know, we have siloed pediatric-based care to adult-based care.

KLEIN: Okumura and other researchers are developing new strategies, like partnering pediatricians with transitional specialists and guiding patients toward better self-care. A new fellowship program even preps doctors for adults with congenital heart disease.

As for Rachael Goldring, she's one of the lucky ones who can stay with pediatricians until finding the right adult providers. She's working on it but transitioning with her fiance first. For NPR News, I'm Kerry Klein in Fresno.


INSKEEP: Her story's part of a reporting partnership with NPR News, local member stations and Kaiser Health News.

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