JEN, OVER TO YOU.
THANK YOU VERY MUCH.
RICHARD.
SO EACH YEAR CONGENITAL HEART
DEFECT AFFECTS 40,000 CHILDREN
ACCORDING TO THE CENTERS FOR
DISEASE CONTROL.
THEY ARE THE MOST COMMON BIRTH
DEFECTS.
JOINING ME NOW THIS MORNING IS
JENNIFER KILLINGSWORTH, SHE WAS
BORN WITH A CONGENITAL HEART
CONDITION.
THANK YOU FOR BEING HERE.
LET'S GO THROUGH YOUR STORY
FIRST, BACK WHEN YOU WERE
DIAGNOSED WITH THIS IS REALLY
BEFORE THE THEY STARTED TO DOING
SURGERIES ON LITTLE, TINY
BABIES, YOUR THREE WEEKS OLD.
CORRECT.
HOW DID YOUR MOTHER
RECOGNIZE SOMETHING WAS WRONG
ENOUGH TO RUSH YOU THE HOSPITAL
AND FOR THEM TO FIGURE OUT WHAT
WAS HAPPENING?
SHE WAS ACTUALLY GIVE MEG A
BATH AND I TURNED BLUE WHICH IS
A COMMON SYMPTOM.
AND TOOK ME TO THE PEDIATRICIAN
AND HE SAID, IT ISETH EAR CLOT
OR HAS SOMETHING SIGNIFICANTLY
WRONG WITH HER HEART AND SEND --
SENT US TO THE HOSPITAL AND THAT
WAS OUR FIRST EXPERIENCE WITH
PEDIAT FRICK CARDIOLOGISTS.
WE WERE CHATTING DURING THE
BREAK.
YOU STILL SEE A PEDIATRIC
CARDIOLOGIST BECAUSE OF WHAT
HAPPENED TO YOU MANY YEARS AGO.
I WANT TO BRING IN THE DOCTOR.
CAN YOU DESCRIBE FOR OUR VIEWERS
WHO DON'T HAVE CHILDREN YET FOR
EXAMPLE, OR CHIN WHO DON'T HAVE
THIS.
WHAT IS A CONGENITAL HEART
DEFECT.
IT OCCURS BEFORE A CHILD IS
BORN AS THEY'RE DEVELOPING,
GETTING READ I DO GROW, COME OUT
INTO THE WORLD.
THAT EARLY PHASE OF HOW THE
HEART FORMS DOESN'T GO THROUGH
ALL THE PROPER STEPS EITHER SOME
OF THE CHAMBERS DON'T LINE UP
NORMALLY OR A VALVE DOESN'T FORM
OR SOMETIMES THERE ARE HOLES IN
BETWEEN THE DIFFERENT CHAMBERS
THAT DON'T COMPLETELY CLOSE UP
NORMALLY, IT CAN BE DETECTED AT
VARIOUSIGESTA, SOMETIMES BEFORE
CHILDREN ARE BORN THE OBSEAT
TRICK ASSESSMENT IS USED TO
SCREEN FOR MAJOR DEFECTS.
A LOT OF THESE ARE DETECTED
BEFORE CHILDREN ARE BORN.
TECHNOLOGY HAS IMPROVED.
THROUGH SONOGRAMS.
OB VISIT AND SONOGRAM VISITS
ARE EXTREMELY IMPORTANT.
SMALL EDEFECTS ARE AFTER
CHILDREN ARE BORN, WITH MURMURS
OR GOING HOME FROM THE HOSPITAL
NOW.
MANY NEWBORN NEWS NURSERIES,
NICUS ARE DOING SCREENING TO
DETECT SOME OF THESE OTHER HEART
DISEASES SIMILAR TO JENNIFER'S
BEFORE CHILDREN LEAVE THE
HOSPITAL.
THAT HAS BECOME A STANDARD
PRACTICE.
THIS CAN BE LIFE THREATENING
ALSO IF NOT CAUGHT.
WALK US THROUGH YOUR LIFE.
I KNOW WE HAVE PHOTOS OF YOU
THROUGH VARIOUSIGESTAS.
THIS WAS BY NO MEANS AN EASY
FIX.
YOU HAD TO WAIT UNTIL YOU WERE
18 MONTHS BEFORE THEY COULD
REALLY DO ANY KIND OF SURGICAL
PROCEDURE.
AND YOU HAD ISSUES THROUGHOUT
WHEN YOU WERE 7 AND ALSO AT HIGH
SCHOOL.
JUST LIKE YOU SAID, I WAITED
UNTIL ALMOST 18 MONTHS AND WE
WENT TO SHANS GAINESVILLE AND
YOU KNOW, I DIDN'T REALLY
APPRECIATE THAT THERE WAS A
DIFFERENCE SO MUCH OTHER THAN
PROCEDURES ALONG THE WAY AND
PROCEDURE AT 7 AND AGAIN THE
SUMMER BEFORE MY SOPHOMORE YEAR
AGAIN AND UNTIL CLOAJ, I WAS
HAVING TROUBLE I NAVIGATING THE
BUILDINGS THERE.
AND WENT FOR PEDIATRIC
CARDIOLOGY AND IT WAS TIME FOR
THAT VALVE TO BE REPLACED AGAIN.
YOU HAVE A DEFIBRILLATOR
THAT HAS BEEN IMPLANTED.
YOU LOOK HEALTHY, NO ONE WOULD
KNOW LOOKING AT YOU.
JO.
NO ONE WOULD KNOW.
Bruce: LET'S.
Jennifer: LET'S TALK ABOUT
THE WARNING SIGNS.
THE IMPORTANT THING TO KNOW,
THROUGH ROUTINE CHECKUP WES HAVE
WE CAN STAY AHEAD OF DETECTING
WHEN THERE MIGHT BE TIME FOR
VALVE REPLACEMENTS OR IF THERE
ARE OTHER ADDITIONAL LATE
COMPLICATIONS, USE OF EKGs
ALSO 24-HOUR MONITORS OR
DIFFERENT KEEPS OF MONITORING
SYSTEMS CAN HELP US DETECT LATE
COMPLICATIONS LIKE ABNORMAL
HEART RELATIONSHIPS.
IT IS A LIFELONG DISEASE FOR
MANY.
AND SO IT IS THIS ROUTINE
FOLLOW-UP AND MONITORING THAT
HELPS US TO KNOW IF ADDITIONAL
SURGERY IS NEEDED OR IF WE NEED
THE SURVEILLANCE FOR LATE
COMPLICATIONS.
WHICH IS WHY IT IS SO
IMPORTANT THAT PARENTS OF NEW
CHILDREN AND NEWBORNS YOU HAVE
TO PAY SUCH CLOSE ATTENTION AND
ANY SMALL THING TURNING BLUE A
BIG RED FLAG, MAKE SURE YOUR
PEDIATRICIAN IS MADE AWARE OF
IT.
THANK YOU FOR BEING HERE AND THE
REASON WE'RE HAVING HERE IS
RAISING AWARENESS ABOUT CONSJENG
E GENITAL HEART DISEASE WHICH IS
WHY THERE IS A WALK TOMORROW.
AT THE UNF, REGISTRATION BEGINS
AL 8:00 WITH THE WALK AT 9 A.M
WHEN YOU'RE ENCOUNTERING ANY
KIND OF ILLNESS OR DISEASE OR
CONDITION, RAISING MONEY IS SO
IMPORTANT HELPING FIND WAYS TO
TREAT THOSE CONDITIONS WHICH IS
WHY WALKS LIKE THIS ARE SO
IMPORTANT, WHICH IS WHY WE'RE
URGING YOU TO REGISTER BY GOING
TO CONGENITAL HEARTWALK.ORG AND
WE'LL POST A LINK TO THAT WEB