Tetralogy of Fallot - Outcomes - The children's hospital of Philadelphia - 5 of 5

>> ROBERT COMES BACK ONCE A YEAR FOR FOLLOW-UP NOW. WE USUALLY HAVE OUR ANNUAL ECHOCARDIOGRAMS, AND HE'S ON NO MEDICATION, AND HE HAS NO RESTRICTIONS. AND HE'S JUST AN ACTIVE LITTLE BOY. >> WE RECENTLY LOOKED AT A SERIES OF A HUNDRED CONSECUTIVE CHILDREN AT CHOP, HAVING ELECTIVE TETRALOGY REPAIR BETWEEN--AT UNDER 6 MONTHS OF AGE, WHICH MEANS THEY'VE BEEN OUT OF THE HOSPITAL AND THEY CAME BACK ELECTIVELY FOR THEIR OPERATION. AND EVERY ONE OF THOSE CHILDREN SURVIVED THE OPERATION. NOW, THAT DOESN'T MEAN THE MORTALITY IS ZERO. IT MEANS SOME OF THOSE CHILDREN WERE VERY SICK. BUT IT DOES MEAN THAT SURVIVAL FOR STRAIGHTFORWARD TETRALOGY SHOULD BE EXCELLENT. AND THEN THE LONG-TERM SURVIVAL ALSO APPEARS TO BE VERY, VERY GOOD. >> THE VAST MAJORITY OF CHILDREN WITH TETRALOGY OF FALLOT WILL HAVE WHAT IS ESSENTIALLY A NORMAL LIFE. >> BY CLOSING THE HOLE AND RELIEVING THE OUTFLOW TRACT OBSTRUCTION, ONE IS RECREATING A SITUATION THAT'S RELATIVELY CLOSE TO THE NORMAL HEART. HOWEVER, BECAUSE OF THE INITIAL ELEMENT OF NARROWING IN THE RIGHT VENTRICULAR OUTFLOW TRACT AND THE NEED TO ENLARGE THE NARROWING, THERE CAN BE LEAKAGE OF THE PULMONARY VALVE. >> AND WHILE THAT IS VERY WELL TOLERATED, THERE ARE SOME PEOPLE, AS THEY GET INTO ADULTHOOD, WHERE THE AMOUNT OF THAT LEAKAGE CAUSES THE RIGHT SIDE OF THE HEART TO ENLARGE AND THEY NEED TO HAVE AN ARTIFICIAL VALVE PUT IN ON THE RIGHT SIDE OF THE HEART. SO THERE IS SOME RISK OF NEEDING ADDITIONAL SURGERY AFTER THESE REPAIRS. >> THERE ARE SOME PATIENTS WHO CONTINUE TO HAVE SOME EVIDENCE FOR RESIDUAL NARROWING EVEN AFTER INITIAL RELIEF OF THE PULMONARY STENOSIS. IN A SMALL PERCENTAGE OF PATIENTS, THERE CAN BE DIFFICULTIES AND PROBLEMS WITH NARROWING THAT OCCURS DOWNSTREAM OF THE PULMONARY ARTERY IN THE VESSELS WITHIN THE LUNG ITSELF. AND THOSE NARROWINGS CAN OFTENTIMES BE TREATED WITH CATHETER-TYPE TECHNIQUES, OR SOMETIMES THEY MAY EVEN REQUIRE PLACEMENT OF A STENT THROUGH A CATHETER. >> IN ADDITION, PATIENTS WITH TETRALOGY OF FALLOT REPAIR MAY HAVE A HIGHER RISK FOR RHYTHM PROBLEMS. >> I HAVE A SISTER THAT IS SIX YEARS YOUNGER THAN I, AND SHE WAS BORN WITH TETRALOGY. SHE WAS OPERATED ON AT 15 MONTHS, AND SHE--SHE HERSELF NEEDED A PACEMAKER. >> THE USE OF MEDICATION AND THE REQUIREMENT FOR PACEMAKERS HAS BEEN AN ISSUE FOR OLDER PATIENTS AFTER TETRALOGY OF FALLOT REPAIR. OUR HOPE IS THAT IN THE CURRENT ERA OF TECHNOLOGIC ADVANCES THAT THIS WILL BE LESS OF AN ISSUE FOR PATIENTS AS THEY GET OLDER IN THE FUTURE. >> HER HEART DISEASE WAS A LITTLE BIT MORE THAN ROBERT'S. AND GROWING UP KNOWING WHAT A NORMAL LIFE SHE HAD, I KNEW THAT HE WOULD BE OKAY. >> SO REPAIR OF TETRALOGY OF FALLOT CAN RESULT IN A NORMAL QUALITY OF LIFE, AND IN THE VAST MAJORITY OF THESE PATIENTS, THERE IS VERY LITTLE RESIDUAL PROBLEM OR ISSUE THAT THEY NEED TO DEAL WITH. CERTAINLY, THESE PATIENTS NEED TO BE FOLLOWED BY A CARDIOLOGIST, AND THEY NEED TO BE SEEN AND EVALUATED AT REGULAR INTERVALS. >> BUT IN TERMS OF THE ABILITY TO DO THINGS AND TO, YOU KNOW, HAVE CHILDREN OF YOUR OWN AND GROW UP AND BE EMPLOYED, PEOPLE WITH TETRALOGY OF FALLOT DO EXTREMELY WELL. AND THERE ARE MANY ADULTS NOW WITH CONGENITAL HEART DISEASE. IN FACT, 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. >> ROBERT, HE'S 9 YEARS OLD NOW. HE IS VERY ACTIVE. HE PLAYS BASEBALL. HE PLAYS SOCCER. HE RIDES HIS BIKE. HE ALWAYS WANTS TO BE OUTSIDE. ROBERT IS LOVABLE. HE'S FUNNY. HE'S A GREAT KID. >> 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 4 OR 5 YEARS OLD. >> AND REALLY SEE THAT THEY'RE JUST LIKE ANY OTHER KID. >> 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.