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>> A GENERATION AGO, THE FUTURE FOR CHILDREN
WITH SINGLE VENTRICLE DEFECTS WAS UNCHARTED TERRITORY.
TODAY, DOCTORS CAN GIVE FAMILIES A ROADMAP OF WHAT
TO EXPECT FROM BEFORE BIRTH TO ADULTHOOD.
IT DOESN'T MEAN EVERYTHING WILL GO SMOOTHLY,
BUT IT DOES MEAN THE MEDICAL TEAM AND THE FAMILY
ARE BETTER INFORMED AND BETTER PREPARED TO DEAL
WITH WHATEVER COMES ALONG.
>> THERE WAS A PERIOD OF TIME IN THE 1970S AND 1980S
WHERE IN FACT THERE WAS NO HOPE WHATSOEVER FOR THESE
CHILDREN, WITH THE VAST MAJORITY NOT SURVIVING
BEYOND PERHAPS EVEN THE FIRST FEW DAYS OF LIFE.
>> IN THE EARLY PART OF OUR EXPERIENCE WITH SINGLE
VENTRICLE HEART DEFECTS, SURVIVAL WAS OUR MAIN GOAL.
>> TODAY, OUR FOCUS IS A DIFFERENT ONE.
IT'S TO NOT JUST CREATE SURVIVAL,
WHICH IN ESSENCE IS EXPECTED IN THE VAST MAJORITY
OF CASES, BUT TO CREATE A SUSTAINABLE QUALITY OF LIFE
AND TO CREATE A NORMAL DURATION OF LIFE.
>> THERE'S MORE FOCUS ON TRYING TO PREVENT PROBLEMS
AND TRYING TO ANTICIPATE THEM.
>> TO BE ABLE TO GIVE FAMILIES A ROADMAP
SO THAT THEY CAN HAVE AT LEAST AN IDEA OF WHAT
TO EXPECT OVER TIME.
>> OVERALL, OUR EXPECTATION IS THAT THESE KIDS WILL NOT
ONLY SURVIVE, BUT SURVIVE WITH A GOOD QUALITY OF LIFE.
>> PART OF THE ABILITY TO BETTER TREAT SINGLE
VENTRICLE DEFECTS IS SIMPLY KNOWING ABOUT THEM EARLIER.
JASON'S CONDITION WAS NOT DISCOVERED UNTIL AFTER HE
WAS BORN AND HAD GONE HOME FROM THE HOSPITAL.
>> WHEN THE VISITING NURSE CAME,
SHE SAID, "YOU NEED TO CALL 911 RIGHT AWAY."
AND THAT'S WHEN I PANICKED.
SO THE AMBULANCE CAME, THEY TOOK JASON.
AND YOU FEEL -- I JUST FELT SO SAD AND I FELT SO
OVERWHELMED, LIKE -- AND SO HELPLESS.
LIKE HERE IS MY FIRSTBORN, MY BEAUTIFUL BABY BOY,
WE GOT HIM OUT OF THE HOSPITAL,
AND NOW THEY'RE TELLING ME THAT HE'S HAVING THESE
MAJOR, MAJOR HEART PROBLEMS.
>> BEFORE FETAL ULTRASOUND WAS SOMETHING THAT WAS
FAIRLY ROUTINE, IT WAS NOT UNCOMMON AT ALL FOR BABIES
TO COME IN DEATHLY ILL, VERY ACIDOTIC,
VERY POOR BLOOD FLOW TO THEIR BODY,
WITH DAMAGE TO THEIR KIDNEYS,
DAMAGE TO THEIR LIVER, DAMAGE TO THEIR BRAINS
VERY OFTEN, DAMAGE TO THEIR LUNGS AND ALL THEIR ORGANS,
BECAUSE WE DID NOT KNOW THAT THEY HAD THIS PROBLEM
AND IT WAS UNANTICIPATED.
AND WHEN ONE STARTS WITH THAT AS THE STARTING POINT
FOR TRYING TO GO INTO A VERY COMPLEX SERIES
OF OPERATIONS, IT'S NOT SURPRISING THAT THE OUTCOMES
ARE NOT NEARLY AS GOOD.
>> I THINK IT WAS 10 DAYS BEFORE THEY WERE ABLE
TO OPERATE ON HIM.
SO TO STABILIZE HIM FOR THESE 10 DAYS,
TO MAKE SURE THAT NO MAJOR ORGAN DAMAGE HAD OCCURRED
TO HIM.
ALL THIS COULD HAVE BEEN AVOIDED HAD WE KNOWN
AHEAD OF TIME.