>> WE HAD OUR TWIN GIRLS MARCH 29TH.
AND THEY'RE NOW FIVE YEARS OLD AND LUCKILY VERY HEALTHY
AND BEAUTIFUL.
>> THEIR BIRTHDAY WAS IN THE END OF MARCH
AND THEY'RE GOING TO GRADUATE FROM PRESCHOOL IN JUNE.
THEY PLAYED SOCCER FOR THE FIRST TIME THIS YEAR.
TO SEE THEM OUT THERE RUNNING AROUND IN THE SOCCER
FIELD OR TO NOT BE RUNNING AROUND,
TO BE STANDING AND PICKING DAISIES WHILE THE BALL'S
GOING BY, IT'S NICE TO JUST SEE SWEET LITTLE GIRLS HAPPY.
>> FIVE, TEN YEARS AGO WE HAD NOWHERE NEAR
THE POSITIVE RESULTS THAT WE HAVE TODAY.
WE HAD NOWHERE NEAR THE UNDERSTANDING
THAT WE HAVE TODAY.
AND IN ESSENCE, WE'VE TAKEN WHAT HAS BEEN FOR MOST SETS
OF TWINS A LETHAL DISEASE, WE'VE MADE IT MANAGEABLE,
AND WE'VE HAD TREMENDOUS SUCCESS IN CREATING SURVIVORS.
AND THAT'S INCREDIBLY GRATIFYING.
>> A PROFOUNDLY REMARKABLE CHARACTERISTIC
IS THE DEDICATION OF THE CENTER TOWARDS THE CARE OF FAMILIES
AFFECTED BY TWIN-TWIN TRANSFUSION SYNDROME.
>> A LOT OF OUR KNOWLEDGE HAS JUST IN THIS AREA HAS
ONLY COME IN THE LAST FEW YEARS OF STUDYING,
YOU KNOW, INJECTION STUDIES OF PLACENTAS.
>> WE COLLABORATE WITH OUR REFERRING PHYSICIANS AS WELL
AS OUR FAMILIES TO HAVE THE PLACENTAS RETURNED TO US
FOR FORMAL PATHOLOGIC EXAMINATION.
PART OF THAT IS SO THAT WE CAN GAIN A DEEPER
APPRECIATION FOR THE MECHANISMS THAT ARE INVOLVED
IN TWIN-TWIN TRANSFUSION SYNDROME.
>> IT BECOMES CERTAINLY A CHALLENGE FOR US TO TRY
TO RECOGNIZE WHAT'S GOING ON AND THE BEST THERAPY
TO TREAT THESE, TO GIVE THESE FAMILIES THE BEST
OUTCOME POSSIBLE.
>> WE OFFER OUR PATIENTS THAT UNDERGO SELECTIVE LASER
THE OPPORTUNITY TO RETURN FOR AN EXTENSIVE
NEURODEVELOPMENTAL AS WELL AS NEONATAL CARDIAC
EVALUATION.
>> THIS IS TRUE TRANSLATIONAL MEDICINE
IN THAT WE ARE LEARNING FROM OUR EXPERIENCE IN MANAGING
THESE PATIENTS AND WHAT WE LEARN IS VERY QUICKLY
CONVERTED INTO CHANGES IN HOW WE MAKE
MANAGEMENT DECISIONS.
>> THERE'S A HUGE DEBT THAT WE OWE TO THESE FAMILIES.
THEY HELP US TO ADVANCE THE SCIENTIFIC PURPOSE THAT
WE'RE HERE FOR. THEY HELP US TO ADVANCE FETAL TREATMENT,
AND IN ADDITION THEY PROVIDE--THEY'RE THE LIFE
OF THE CENTER.
>> EVERY SINGLE FAMILY'S CONTRIBUTION INCREASES
THE LIKELIHOOD OF FUTURE FAMILIES HAVING BETTER
OUTCOMES.
>> THEY JUST BRING SUCH JOY AND SUCH COMMITMENT TO THIS
EXPERIENCE EVEN IF THEY'RE DEALING WITH A SITUATION
THAT'S LESS THAN OPTIMAL.
>> BY ALLOWING US TO CARE FOR THEIR PREGNANCY,
CARE FOR THEIR CHILDREN, IT'S PROBABLY THE PRINCIPLE
REASON THAT WE'RE ABLE TO MAKE PROGRESS.
>> IN MANY CASES, THE FAMILIES AND THE PATIENTS
TEACH US.
>> WE LEARN SO MUCH FROM WATCHING THEM.
>> EVERY FAMILY THAT WE TAKE CARE OF ADDS TO THAT
EDUCATION, ADDS TO THAT LEARNING.
>> THE OTHER VALUABLE CONTRIBUTION IS THAT WE GET
FEEDBACK FROM THEM.
>> ABSOLUTELY THE BEST IDEAS COME FROM FAMILIES.
AND THEY'VE BEEN THROUGH IT AND THEY'VE HAD A CHANCE
TO REFLECT AND THEY GIVE US FEEDBACK THAT HELPS US
CHANGE AND IMPROVE THE PROGRAM FOR THE BETTER.
>> THEY ALWAYS PROVIDE ME WITH A SENSE OF HOPE.
>> I FEEL HONORED TO BE PART OF THESE--
THE LIVES OF OUR FAMILIES.
>> I THINK FAMILIES GET A SENSE FOR THAT,
HOW SPECIAL THEY ARE TO US.
>> WE ARE HERE TO PROVIDE MEDICAL CARE,
BUT REALLY THE FAMILIES ARE HERE TO TEACH US WHAT WE
DON'T KNOW, WHAT WE DON'T UNDERSTAND,
FOR FUTURE GENERATIONS OF CHILDREN WITH THESE PROBLEMS.