>> 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.