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>> THE PULMONARY HYPOPLASIA PROGRAM, OR PHP FOR SHORT,
IS A MULTIDISCIPLINARY GROUP THAT PROVIDES LONG-TERM
FOLLOW-UP AND CARE FOR BABIES WITH CONDITIONS
THAT CAUSE SMALL LUNGS.
THE BEST EXAMPLE ARE BABIES WITH DIAPHRAGMATIC HERNIA.
>> THE TEAM INCLUDES NEURODEVELOPMENTAL ASSESSMENTS,
PULMONARY, CARDIOLOGY, GASTROENTEROLOGY, SURGICAL,
AND THEN THE FAMILY FUNCTIONINGS.
>> --ALL BROUGHT TO THE BABY AND THE FAMILY IN ONE LOCATION.
SO THAT'S VERY IMPORTANT BECAUSE MANY OF THESE BABIES,
WE'VE LEARNED, CAN HAVE LONG-TERM ISSUES THAT REQUIRE
THAT SORT OF COMPREHENSIVE, SYSTEMATIC CARE.
>> THIS AREA RIGHT HERE, YOU'LL SEE IT MOVES.
THAT'S WHERE WE'RE GOING TO LOOK AND SEE IF IT LEAKS A LITTLE
BIT, BECAUSE IT'S THE ONE THING THAT ALLOWS US TO CHECK THE
PRESSURE IN THE RIGHT HEART.
>> I THINK IT'S VERY IMPORTANT TO HAVE THE CARDIOLOGIST
INVOLVED FROM THE GET GO.
THEY ASSESS THE BABIES ON A LONGITUDINAL BASIS,
SO FROM THE TIME WHEN THEY FIRST COME, AND THEN,
YOU KNOW, AGAIN DURING THEIR ACUTE CARE,
AND THEN BEFORE THEY LEAVE AS A BASELINE AND THEN ALSO
IN FOLLOW-UP.
IN DAYS GONE BY WE USED TO SAY "IF THEY SURVIVED,
THEN THEY WERE PRETTY GOOD."
BUT NOW MORE AND MORE BABIES ARE SURVIVING BECAUSE TECHNOLOGY HAS
INCREASED AND SO THERE IS A WIDER RANGE OF POSSIBILITIES.
AND SO WE THINK IT'S VERY, VERY IMPORTANT TO TRACK THAT.
>> HI, SWEET EMILY.
HAS IT REALLY BEEN A YEAR?
>> THE SPECIALISTS ARE THE SAME AS THE ACUTE CARE SETTING
AND SO THEY KNOW THE INFANTS REALLY WELL.
AND WHAT THEY CAN DO IS PUT EVERYTHING TOGETHER
AND SUMMARIZE IT AND HELP THE PEDIATRICIAN OR HELP
THE PHYSICIANS THAT AREN'T CHOP - BASED CONTINUE ON
WITH THEIR CARE.
>> THERE IS A CHANCE FOR A RECURRENCE WITH A GORE-TEX
PATCH IN PLACE SO THAT NEEDS TO BE FOLLOWED.
ONE NEEDS TO ALSO FOLLOW CHEST WALL DEVELOPMENT BECAUSE THAT
COULD BE RESTRICTED BY A PATCH.
ONE NEEDS TO FOLLOW FOR THE POSSIBLE DEVELOPMENT
OF CURVATURE OF THE SPINE, SCOLIOSIS--
FOR PECTUS DEFORMITIES, DEPRESSION OF THE BREASTBONE,
THINGS OF THAT SORT HAVE BEEN SEEN FROM TIME TO TIME IN
CHILDREN THAT HAVE A GORE-TEX PATCH.
IT'S CLEAR THAT BABIES THAT HAVE BARELY ENOUGH LUNG TO SURVIVE
AND BARELY ENOUGH ADEQUATE PULMONARY CIRCULATION TO SURVIVE
CAN HAVE REMARKABLE COMPENSATORY LUNG GROWTH THEREAFTER.
>> ONCE THE HERNIA IS REDUCED, THE SPACE THAT'S CREATED
IN THE CHEST ALLOWS THE LUNGS TO GROW AND DEVELOP.
AND OUR LUNGS CAN GROW IN CHILDHOOD UP TO 8 OR 9 YEARS
OF AGE.
>> ALL THOSE THINGS GO INTO WHAT WE CAN EDUCATE FAMILIES ABOUT
WHEN THEY HAVE THIS PRENATAL DIAGNOSIS.
SO WE CONSIDER IT A HUGE RESPONSIBILITY TO FIGURE IT OUT.