>> JOSEPH IS A PIP.
HE'S VERY FRIENDLY.
HE SAYS HELLO TO EVERYBODY HE SEES.
HE'S JUST VERY VIVACIOUS AND VERY SMART.
WE CAN'T BELIEVE HOW MUCH HE PICKS UP,
AND HE'S JUST A JOY.
>> THE FOLLOW-UP FOR CHILDREN WITH SINGLE-
VENTRICLE PHYSIOLOGY INVOLVES COMPREHENSIVE
EVALUATION OF THEIR HEART MUSCLE FUNCTION,
THE SURGICAL CONNECTIONS THAT WERE MADE AS PART
OF THEIR STAGED OPERATIONS, THE CARDIAC PRESSURES,
THE PRESSURES IN THEIR LUNGS,
AS WELL AS THEIR HEART RHYTHM.
THIS COMPREHENSIVE GENERAL HEALTH ASSESSMENT IS VERY
IMPORTANT TO ASSESS THEIR LONG-TERM CARDIAC WELL BEING
AND LIFE EXPECTANCY.
>> 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.
>> 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.
>> WE'RE FINDING OUT THAT THERE ARE NEUROLOGIC
ABNORMALITIES THAT MANY OF THESE CHILDREN HAVE
AND WILL HAVE AS THEY GROW OLDER, SOME OF THEM
WITH SCHOOL--LEARNING DIFFICULTIES, SOME OF THEM
WITH ADHD ISSUES, AND SOME OF THEM
EVEN MORE COMPLEX THAN THIS.
SO IT'S NOT JUST LIMITED TO THEIR HEART.
IT'S THE NEUROLOGIC ABNORMALITIES THAT ARE
BEGINNING TO SHOW UP THAT IN SOME CHILDREN ARE VERY
MINOR, AND OTHERS ARE MORE SIGNIFICANT.
>> ONE THING THAT WE HAVE SEEN IS THE RHYTHM PROBLEMS,
AND THEY MAY NEED TO HAVE ADDITIONAL SURGERY
TO CONVERT THEIR OLDER STYLE FONTAN OPERATION
TO A NEWER STYLE.
SOME HAVE REQUIRED PACEMAKERS.
SOME, IF THEIR HEART FUNCTION HAS DETERIORATED
OVER TIME, HAVE REQUIRED A HEART TRANSPLANT.
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 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.
>> AFTER THE FIRST SURGERY, YOU KNOW, YOU ALWAYS TALK
ABOUT BLUE BABIES AND ALL THIS OTHER STUFF.
AND HE CAME HOME, AND HE WAS, YOU KNOW, PINK.
HE'S WARM.
HE'S RUNNING AROUND.
HE'S THE ONLY ONE OUT OF THE THREE OF THEM THAT BROKE
HIS ARM.
HE CLIMBS ON EVERYTHING, YOU KNOW.
YOU THINK HE WOULD REALLY BE TIRED.
HE'S NOT.
YOU KNOW, HE RUNS AROUND LIKE CRAZY.
>> WE'RE SO LUCKY.
WE'RE SO BLESSED AND LUCKY THAT HE WAS BORN WHERE HE
WAS AND WHEN HE WAS AND THAT HE HAS THESE PEOPLE TAKING
CARE OF HIM.
WE WOULDN'T WANT TO BE ANYWHERE ELSE BUT HERE.
>> IT GIVES US A LOT OF HOPE,
YOU KNOW, THAT HE'LL LIVE LONG INTO THE FUTURE.
AND THAT'S VERY COMFORTING.
>> 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 INTO 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.
AND 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.