>> AT THIS POINT WE'RE AT AN EVERY-SIX-MONTHS APPOINTMENT
JUST FOR BASIC CHECKUP AND--
>> IT'S THE STANDARD EKG, VITAL SIGNS, OXYGEN LEVELS,
RELATIVELY BRIEF CHECKUPS.
THEY SPEND MORE TIME TALKING TO EACH OTHER AND CATCHING UP.
>> MOST BABIES WITH HYPOPLASTIC LEFT HEART
SYNDROME BORN BEFORE THE 1980S HAD NO CHANCE
OF SURVIVAL.
>> AND MANY CHILDREN ARE NOW IN THEIR EARLY TEENS WITH
THIS KIND OF HEART CONDITION,
AND THEY'RE DOING QUITE WELL.
>> THEY'RE BASICALLY ON A MEDICAL FRONTIER.
THEY'RE ON THE CUTTING EDGE OF MEDICINE RIGHT NOW.
>> THE SURGERY FOR HYPOPLASTIC LEFT HEART
SYNDROME HAS EVOLVED SINCE THE EARLY 1980S
AND CONTINUES TO EVOLVE.
>> SO REALLY, A CHILD WHO SURVIVED ALL THIS IN THE
LATE '80S IS VERY DIFFERENT FROM A CHILD HAVING
SURGERY TODAY.
SO WE HAVE A MOVING TARGET BECAUSE WE'RE GETTING BETTER
AT WHAT WE DO.
>> ONLY TIME WILL TELL WHAT THE LONG-TERM OUTCOME
REALLY IS.
>> SHE IS SO FULL OF ENERGY.
I MEAN, YOU CAN'T EVEN BELIEVE SHE HAS A HEART DEFECT.
AND PEOPLE THAT DON'T KNOW WHAT SHE'S BEEN THROUGH LOOK
AT HER IN AWE OF WHAT SHE'S CAPABLE OF.
>> FROM A HEART STANDPOINT, MOST OF THESE CHILDREN
ARE VERY GOOD AT ADAPTING TO THEIR LIMITATIONS.
AND SO IF THEY'RE ON THE PLAYGROUND,
PLAYING WITH OTHER CHILDREN, THEY WILL PLAY WITH THEM
AND GET AROUND WITH THEM AND LIMIT THEMSELVES
AS THEY NEED TO.
IN ADDITION, WE'RE FINDING OUT THAT THERE ARE ALSO
NEUROLOGIC ABNORMALITIES THAT MANY OF THESE CHILDREN
HAVE AND WILL HAVE AS THEY GROW OLDER,
SOME OF THEM WITH LEARNING DIFFICULTIES,
SOME OF THEM WITH ADHD ISSUES,
AND SOME OF THEM EVEN MORE COMPLEX THAN THIS.
>> WE'VE REALLY PUSHED THE FIELD IN,
YOU KNOW, MAKING THIS A HEART DISEASE THAT IS NOT
ONLY NOT FATAL BUT IS ACTUALLY VERY SURVIVABLE
WITH GOOD OUTCOMES.
AND SHOULDERED ON THAT IS THE TRANSITION TO TRYING
TO OPTIMIZE NEURODEVELOPMENTAL OUTCOMES,
PARTICULARLY FOR BABIES WITH HYPOPLASTIC
LEFT HEART SYNDROME.
AND A LOT OF THAT INFORMATION HAS COME
FROM THIS PROGRAM.
>> A NUMBER OF THESE KIDS ARE GROWN UP NOW
AND ARE DOING WELL-- THEY VISIT--HAVING RELATIVELY
NORMAL LIVES.
>> IN TERMS OF INTRAMURAL SPORTS,
IN TERMS OF, YOU KNOW, BEING ABLE TO DO WHAT OTHER KIDS
DO IN GENERAL, MOST OF THESE CHILDREN HAVE DONE QUITE
WELL AND KEEP UP WITH THEIR PEERS.
MANY OF THESE CHILDREN WILL HAVE ISSUES
WHEN THEY GET OLDER.
SOME WILL REQUIRE ADDITIONAL SURGERY.
SOME WILL REQUIRE ADDITIONAL PROCEDURES OF VARIOUS TYPES.
SOME MAY HAVE RHYTHM PROBLEMS THAT NEED TO BE
ADDRESSED.
AND SOME WILL PROBABLY EVENTUALLY NEED A HEART
TRANSPLANT.
BUT WHAT I TELL FAMILIES IS THAT THERE ARE MORE ADULTS
NOW THAN THERE ARE CHILDREN LIVING WITH CONGENITAL HEART
DISEASE WHICH, FRANKLY, IS A TESTIMONY TO THE FACT WE'VE
BEEN PRETTY SUCCESSFUL AT DEALING WITH THESE
CONDITIONS.
>> OUR MISSION ULTIMATELY IS TO HELP CHILDREN WITH HEART
DISEASE AND TO HELP THEIR FAMILIES GET THROUGH THIS
DIFFICULT PROBLEM, TO DO WHATEVER WE CAN TO MAKE
THEIR LIVES BETTER.
>> WHEN YOU, AGAIN, GO FROM BEING TOLD A DIAGNOSIS LIKE
HYPOPLASTIC LEFT HEART AND FEELING A LOT OF UNCERTAINTY
AND ANXIETY, YOU VISIT HERE, AND YOU REALIZE THERE'S
KNOWLEDGE AND COMPASSION AND COMFORT AT CHOP.
>> YOU WALK IN HERE, AND YOU JUST FEEL,
YOU KNOW, THAT MORGAN'S BEST INTEREST IS IN THEIR BEST
HANDS, SO--
>> THAT'S ONE OF THE REASONS WHY WE CHOSE HER MIDDLE NAME
TO BE HOPE, BECAUSE IT WAS SUCH A STRONG FEELING
AND SENSE THAT WE GOT EVERY TIME WE CAME AND LEFT.
>> WHAT MOVES ME IS TO WORK WITH THE FAMILIES AND TO WORK
WITH THE CHILDREN AND TO GIVE THEM THE BEST
POSSIBLE CARE THAT WE CAN PROVIDE.
THAT'S FIRST AND FOREMOST.
>> AND TO SEE THEM GROW AND TO SEE THEM INTEGRATED INTO
THE FAMILY AND TO SEE THEM INTERFACE WITH THEIR PARENTS
AND THEIR SIBLINGS JUST AS YOU WOULD ANY OTHER ROUTINE
AND NORMAL CHILD.
>> TO BE ABLE TO TAKE THE HEART OF A CHILD AND FIX IT
SO THAT THE PHYSIOLOGY IS BETTER AND THE CHILD
HAS A CHANCE AT A LONG LIFE, THAT'S VERY GRATIFYING.
>> THERE'S NOTHING BETTER THAN SEEING THE KIDS COME
BACK WHEN THEY'RE FOUR OR FIVE YEARS OLD.
>> AND REALLY SEE THAT THEY'RE JUST LIKE ANY OTHER KID.
>> A CHILD WHO HAD HAD HYPOPLASTIC LEFT HEART
SYNDROME WHO--I WALKED IN THE INTENSIVE CARE UNIT ONE
DAY, HE WAS SIX YEARS OLD, AND HE WAS THERE
WITH A BROKEN LEG.
I SAID, "WHAT ARE YOU DOING HERE?"
WELL, HE WAS OUT MOUNTAIN BOARDING WITH HIS COUSINS.
I'M REALLY SORRY HE BROKE HIS LEG,
BUT I'M REALLY HAPPY THAT HERE'S A CHILD WHO 20 YEARS
AGO WOULD HAVE BEEN DEAD, AND HE'S ALIVE TO BE OUT
MOUNTAIN BOARDING WITH HIS COUSINS.
THAT'S WHY TO DO IT.
>> THROUGH THE FETAL HEART PROGRAM,
WE'RE NOW ABLE TO OFFER HOPE AND PROMISE FOR THE FUTURE
FOR THESE CHILDREN TO GO ON TO LEAD HAPPY
AND HEALTHY LIVES.
AND THAT'S WHAT THIS IS ALL ABOUT.