♪♪
>> 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.
