>> WHEN JASON WAS BORN, A SUCCESSFUL OUTCOME FOR
A CHILD WITH SINGLE VENTRICLE WAS SURVIVING SURGERY.
AS HE GREW FROM INFANCY INTO CHILDHOOD AND ADOLESCENCE,
THE FOCUS OF HIS CARE WAS UNDERSTANDABLY HIS HEART.
BUT TODAY, JUST SURVIVING IS NOT ENOUGH.
THE FOCUS IS NOW QUALITY OF LIFE OVER MANY YEARS.
AFTER DECADES OF TREATING THESE PATIENTS,
DOCTORS HAVE FOUND THAT CHILDREN WITH CONGENITAL
HEART DISEASE ARE LIKELY TO FACE OTHER LONG-TERM
CHALLENGES, APART FROM THE HEALTH OF THEIR HEARTS.
>> WE HAVE THE GOOD FORTUNE OF HAVING THESE CHILDREN NOW
SURVIVE THEIR SURGERIES AND OFTEN A SERIES OF THREE
OR MORE SURGERIES.
BUT NOW WE'RE FINDING OUT NEW PROBLEMS AS THEY GO
INTO TEENAGE AND ADULT YEARS.
>> AS OUR CHILDREN HAVE GROWN UP AND GONE TO SCHOOL,
WE'VE BEEN LEARNING THAT THEY'RE MORE PRONE
TO SCHOOL PROBLEMS.
>> CHILDREN WITH COMPLEX CONGENITAL HEART DEFECTS
ARE AT HIGHER RISK FOR HAVING PROBLEMS WITH ADHD,
LEARNING PROBLEMS, BEHAVIORAL ISSUES,
AND CERTAIN SPECIFIC ISSUES WITH THEIR LANGUAGE
AND WRITING AS THEY PROGRESS THROUGH THE SCHOOL SYSTEMS.
>> WE WANT TO IMPROVE THEIR QUALITY OF LIFE AND BEGIN
TO ADDRESS THE SPECIFIC CHALLENGES THAT RELATE
TO BEING A SURVIVOR OF SINGLE VENTRICLE.
THAT'S WHERE PROGRAMS SUCH AS THE NEUROCARDIAC CARE
PROGRAM AND THE SINGLE VENTRICLE SURVIVORSHIP
PROGRAM COME INTO PLAY.
>> THE NEUROCARDIAC CLINIC WAS REALLY ESTABLISHED
TO HELP FOLLOW THESE PATIENTS NOT ONLY ANTICIPATE WHAT
THEIR NEEDS ARE, BUT ALSO ESTABLISH A TYPE
OF INTERVENTION VERY EARLY FOR PATIENTS.
IT'S A VERY MULTIDISCIPLINARY CLINIC
THAT COMPRISES OF THE CARDIOLOGISTS
AND NEUROLOGISTS, PEOPLE FROM PHYSICAL THERAPY,
OCCUPATIONAL THERAPY, OFTEN SPEECH THERAPY,
MANY SOCIAL SERVICES ARE COMBINED.
AND REALLY THE EFFORT IS TO HAVE THE PARENTS COME INTO
ONE PLACE WHERE THEY CAN GET A GROUP ASSESSMENT ON HOW
THEIR CHILD IS DOING THROUGHOUT VARIOUS STAGES
OF THEIR DEVELOPMENT.
>> TO PICK UP ON THAT AT EACH DEVELOPMENTAL MILESTONE
IS GREAT, BECAUSE YOU DON'T KNOW GOING INTO THIS.
YOU KNOW, IT'S A DIFFERENT EXPERIENCE,
DIFFERENT CARE, DIFFERENT PROBLEMS.
AND IT'S GREAT TO HAVE THAT FROM THE BEGINNING
AND GOING FORWARD.
>> THE CLINICAL RESEARCH THAT'S BEEN DONE AT CHOP
AND AT OTHER INSTITUTIONS ABOUT NEURODEVELOPMENTAL OUTCOMES
IN CHILDREN WITH CONGENITAL HEART DISEASE HAS BEEN
VERY IMPORTANT.
AND WE'RE PROUD TO SAY THAT WE WERE IN THE FOREFRONT
OF STARTING CLINICAL PROGRAMS TO ADDRESS SOME OF THESE
DEVELOPMENTAL ISSUES AT THE CHILDREN'S HOSPITAL
OF PHILADELPHIA BASED UPON THE OUTCOMES OF THIS RESEARCH.
>> WE FEEL IT'S REALLY OUR RESPONSIBILITY TO CONTINUE
TO FIND NEW WAYS TO ANTICIPATE PROBLEMS
THAT COULD DEVELOP, AND WHEN PROBLEMS DO DEVELOP,
TO FIND NEW WAYS TO TREAT THOSE PROBLEMS.
HERE AT CHOP, WE'VE ACTUALLY SET UP A SINGLE VENTRICLE
SURVIVORSHIP PROGRAM, WHICH FOCUSES CLINICAL EFFORTS,
AND EVEN A MAJOR PART OF OUR RESEARCH FOCUS IS IN THIS
AREA AS WELL.
>> IT HAS TWO ASPECTS TO IT.
ONE IS TO BEGIN TO MANAGE AND CARE FOR SOME
OF THE CHALLENGES THAT WE ARE SEEING OUR CHILDREN FACE
AS THEY GET INTO THEIR SCHOOL AGE,
TEENAGE AND ADULT YEARS.
>> THERE ARE ENDOCRINOLOGIC ISSUES THAT MAY SHOW UP,
SOMETIMES GASTROINTESTINAL ISSUES THAT SHOW UP.
SO IT REALLY DOES REQUIRE BUILDING TEAMS THAT CAN
MANAGE THESE PROBLEMS AT EVERY STAGE THROUGHOUT THESE
PATIENTS' LIVES.
>> THE SECOND ROLE OF THE SINGLE VENTRICLE
SURVIVORSHIP PROGRAM IS IN FACT TO FUNCTION AS
A PROGRAM THAT CAN CLINICALLY SCREEN PATIENTS WHO HAVE
MADE IT THROUGH SURGICAL RECONSTRUCTION.
BECAUSE WE DON'T YET FULLY UNDERSTAND THE EXTENT
OF SOME OF THE CHALLENGES THAT THESE CHILDREN ARE GOING
TO FACE, WE THINK IT'S NOW IMPORTANT TO TRY AND HEAD
OFF SOME OF THE UNEXPECTED AND SOME OF THE UNKNOWNS
AND BEGIN TO TEST AND LOOK AT DIFFERENT ORGAN SYSTEMS
AFTER THE FONTAN OPERATION.
>> STOSH WILL BE FOLLOWED IN CHOP'S PROGRAMS WELL
INTO HIS SCHOOL YEARS.