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♪♪
>> FOR MOST OF HUMAN HISTORY THE FETUS HAS BEEN REALLY SHROUDED
IN MYSTERY AND MULTIPLE LAYERS OF THE MATERNAL ABDOMEN
OBSCURING ANYTHING THAT WAS WRONG WITH THE FETUS.
>> WITH THE EMERGENCE OF PRENATAL DIAGNOSTIC TECHNIQUES,
PARTICULARLY WITH THE ADVENT OF MATERNAL-FETAL ULTRASOUND,
WE COULD VIEW INTO THE WOMB FOR THE FIRST TIME.
>> WE COULD SEE THINGS WE'D NEVER SEEN BEFORE AND,
AS THOSE FETUSES WERE FOLLOWED, IT BECAME MORE CLEAR WHAT MAY
OR MAY NOT HAPPEN TO THEM.
>> THERE WERE A CERTAIN CATEGORY OF BIRTH DEFECTS THAT WERE,
FOR THE MOST PART, LETHAL.
WHERE, WHEN THE BABY WAS BORN, WE WERE TOO LATE TO DO ANYTHING
ABOUT IT.
>> THAT WAS REALLY THE IMPETUS TO TRY TO KNOCK ON THE DOOR SOONER.
>> PERHAPS WE CAN TREAT THIS NEW GROUP OF HIGHLY-SELECTED UNBORN
PATIENTS WHO HAVE SEVERE DISEASES THAT ARE PROGRESSIVE
DURING THE PREGNANCY.
MAYBE WE COULD TREAT THEM BEFORE BIRTH AND THAT WAS A VERY
RADICAL AND CONTROVERSIAL CONCEPT.
>> AT 20 WEEKS I HAD THE LEVEL II ULTRASOUND,
AND EVERYTHING WAS FINE.
ABOUT FIVE WEEKS LATER, I WENT FOR A REGULAR CHECKUP WITH MY OB,
AND HE SAID, "YOU KNOW, YOU'RE MEASURING A COUPLE WEEKS
AHEAD OF SCHEDULE.
LET'S JUST GET AN ULTRASOUND AND JUST MAKE SURE EVERYTHING'S
GOING OKAY."
AND THAT'S WHEN WE FOUND OUT THAT I WAS CARRYING A VERY,
VERY SICK BABY.
>> I THINK ABOUT FETAL SURGERY WORK BEING PRESENTED AT NATIONAL,
INTERNATIONAL MEETINGS AND ESSENTIALLY BEING LAUGHED
OUT OF THE ROOM.
>> MOST PEOPLE THOUGHT WE WERE CRAZY BECAUSE THERE HAD TO BE
AT LEAST 100 REASONS WHY YOU COULDN'T OPERATE ON A FETUS.
>> THERE WAS ALSO A LOT OF SKEPTICISM ABOUT WHETHER OR NOT
THIS WAS REALLY BENEFICIAL.
>> THAT'S FREQUENTLY THE CASE WITH SOMETHING THAT'S NEW,
AND IT WAS OUR OBLIGATION TO NOT ONLY CONVINCE THE WORLD,
CONVINCE OURSELVES, BUT ALL THAT WORK HAD TO BE DONE PRIOR
TO STARTING IT CLINICALLY.
>> WE HAD TO KNOW THAT, IF WE OFFERED ANYTHING BEFORE BIRTH,
IT HAD TO BE SAFE FOR MOM.
>> WE HAD TO GO INTO THE EXPERIMENTAL LABORATORY AND WORK
PRINCIPALLY WITH FETAL SHEEP TO DEVELOP THE ANIMAL MODELS
AND THE TECHNIQUES THAT WE HOPED SOME DAY COULD
BE USED CLINICALLY.
>> WE SHOWED THAT THOSE ANATOMIC ABNORMALITIES CAUSE THE SAME
SORT OF ORGAN DAMAGE THAT WAS SEEN THE HUMAN FETUSES,
AND WE SHOWED IN THE ANIMAL MODEL AGAIN THAT IT COULD BE
CORRECTED BEFORE BIRTH.
>> THEN WE HAD TO APPLY THIS CAUTIOUSLY IN THE CLINICAL
REALM, ISOLATED CASES, BEING BRUTALLY HONEST WITH THE FAMILIES
ABOUT WHAT WE COULD AND COULD NOT DO,
WHAT OUR HOPES WERE, AND WHAT OUR FEARS WERE.
>> AND PEOPLE BEGAN TO BELIEVE-- OH, IN CERTAIN SELECT INSTANCES
IT'S NOT CRAZY TO OPERATE ON THE BABY BEFORE THEY'RE BORN.
>> WHEN THEY TOLD US WHAT FETAL SURGERY MEANT,
IT WAS VERY SURREAL.
IT WAS SOMETHING OUT OF A SCI-FI MOVIE.
>> WE SAT DOWN WITH THE DOCTORS, AND THEY GAVE US THEIR
CONCLUSIONS ON WHAT THEY BELIEVED ADDISON'S CONDITION
WAS THAT SHE HAD A MEDIASTINAL TERATOMA,
WHICH IS A LARGE TUMOR IN HER CHEST THAT HAD COMPACTED HER
HEART AND HER LUNGS.
SO SHE ACTUALLY WAS IN HEART FAILURE.
WE WERE TOLD IT WAS A 50-50 CHANCE OF SURVIVAL THROUGH
THE SURGERY, AND WE FELT THAT WAS ENOUGH TO PROCEED.
>> WE SPENT A LOT OF TIME TALKING ABOUT THE RISKS
AND THE BENEFITS AND THE FACT THAT WE HAD FAILURES
AS WELL AS SUCCESSES.
>> THEY COULDN'T HAVE BEEN MORE PROFESSIONAL AND CARING
IN MAKING US FEEL LIKE WE WERE MAKING THE RIGHT DECISION.
AND NO MATTER WHAT DECISION WE MADE,
THEY WOULD HAVE BEEN FULLY SUPPORTIVE OF.
>> THE CENTER FOR FETAL DIAGNOSIS AND TREATMENT AT CHOP
IS ONE OF A HANDFUL OF CENTERS THROUGHOUT THE UNITED STATES
AND, IN FACT, THE WORLD AND UNDOUBTEDLY THE LARGEST.
>> CHOP WAS REALLY THE IDEAL PLACE TO DEVELOP A CENTER.
>> CHOP IS AN UNBELIEVABLE PLACE,
SO THERE'S LAYERS AND LAYERS OF EXPERTISE.
>> WHAT WE KNOW AND ARE ABLE TO TELL FAMILIES BECAUSE WE'VE
LIVED IT IS AN AMAZING RESOURCE FOR FAMILIES AND,
WITH THE OPENING OF THE GARBOSE FAMILY SPECIAL DELIVERY UNIT,
WE HAVE CONTINUALLY IMPROVED THE OUTCOME OF MOTHER AND BABY.
>> THE SDU AT CHOP IS THE FIRST OF ITS KIND,
WHERE YOU DELIVER THE FETUS IN A CHILDREN'S HOSPITAL,
WHERE ALL OF THIS SERVICES THAT THAT FETUS NEEDS
ARE IMMEDIATELY AVAILABLE.
>> DR. ADZICK DESCRIBED SOME OF THE EARLY PROCEDURES TO US AND
HOW MUCH IT HAD CHANGED AND JUST FROM WHERE HE WAS AND WHERE HE
HAD COME TO WHEN HE OPERATED ON ADDISON WAS AN AMAZING CHANGE,
AN AMAZING IMPROVEMENT.
AND I EXPECT IT TO CONTINUE.
♪♪
>> BABIES ARE STILL DYING.
WE DON'T UNDERSTAND ENOUGH.
BUT OUR LAB HERE IS ENTIRELY FOCUSED ON LEARNING EVERYTHING
WE POSSIBLY CAN ABOUT THE MYSTERIES OF THE FETUS.
THERE IS INCREDIBLE RESEARCH ENDEAVOR THAT IS ALWAYS KNOCKING
ON THE NEXT DOOR.
>> FROM MATERNAL SAFETY, IMAGING TECHNIQUES,
TO OPEN FETAL SURGERY, TO NOW MINIMALLY INVASIVE FETAL SURGERY,
AND ULTIMATELY TO STEM CELL AND GENE THERAPY.
>> IN THE NEXT FIVE YEARS, WE'LL BE TREATING A CHILD WITH SICKLE
CELL DISEASE IN UTERO WITH A SINGLE INJECTION OF CELLS.
>> WE'RE GOING TO SEE KIDS WHO HAD DIAGNOSES THAT THERE
WAS NO HOPE FOR.
WE'RE GOING TO SEE THESE KIDS ACTUALLY SURVIVING AND LIVING
GREAT LIVES BECAUSE OF THE INTERVENTIONS THAT THEY'RE DOING
AND BECAUSE OF THE RESEARCH THAT THEY'RE DOING.
>> WE SEE TEENAGERS NOW, WHEN BEFORE WE SAW FETUSES.
AND THAT WORK WOULD NOT HAVE BEEN POSSIBLE WITHOUT
THE SUPPORT FROM DONORS.
>> PHILANTHROPY IS AN OPPORTUNITY TO HAVE A TREMENDOUS IMPACT.
>> AND WHAT BETTER THING TO FUND THAN BABIES?
I MEAN, BECAUSE YOU'RE FUNDING A CURE FOR A LIFETIME.
>> TRULY THEY ARE SAVING LIVES AND MAKING FAMILIES WHOLE
AND HAPPY.
>> THE ULTIMATE PAYOFF IS SEEING MOM COME BACK WITH HER CHILD
AND HOW NORMAL THEY ARE AND HOW ACTIVE THEY ARE AND HOW
SMART THEY ARE.
>> ADDISON IS EVERYTHING A THREE-YEAR-OLD LITTLE GIRL
SHOULD BE.
SHE IS NOSY.
SHE DOESN'T LISTEN.
SHE SMILES.
SHE'S HAPPY.
SHE LIKES WEARING HER DRESSES.
>> ADDISON IS A DELIGHT.
PEOPLE SAY TO ME, "SHE'S SO HAPPY."
AND SHE HAS JUST GOT SUCH A BRIGHT LOVE OF LIFE.
>> AND YOU WATCH HER GROW, AND YOU WATCH HER SMILE,
AND YOU WATCH HOW SHE CHANGES, AND HOW SHE'S CONQUERED
THE OBSTACLES IN HER WAY, AND YOU'RE AMAZED.
>> WHEN SHE WAS BORN AND SO SICK,
I NEVER WOULD HAVE IMAGINED THAT SHE WOULD BE DOING AS WELL AS
SHE IS TODAY.
AND, IF THE CENTER FOR FETAL DIAGNOSIS AND TREATMENT
WAS NOT THERE OR IF WE WERE NOT MADE AWARE OF IT,
ADDISON WOULD NOT BE HERE TODAY.
>> PEOPLE THAT KNOW HER, THEY LOOK AT HER
AND THEY CAN'T BELIEVE IT.
AND ALL YOU CAN DO IS YOU SIT THERE AND YOU SAY,
"LOOK AT HER NOW."
>> LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> LOOK AT ME NOW. LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> HELLO.
>> SAY LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> SAY HOORAY.
>> YAY.
>> LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> SEE ME NOW.
>> LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> LOOK AT ME NOW.
>> SAY BYE.
>> BYE.