A Roadmap for Childhood And beyond - Advancing care for single ventricle heart defects - 8 of 12

>> 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.