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Long-term Outcomes of Children with LUTO and LUTO Research (9 of 9)

Long-term Outcomes of Children with LUTO and LUTO Research (9 of 9)


>>ONE OF THE KEY
ISSUES FOR FAMILIES IS, OK, IF WE HAVE A
SUCCESSFUL SHUNT AND WE’RE ABLE TO DRAIN THE BLADDER IN
THE URINARY TRACT SO THAT, YOU KNOW, WE GET GOOD
LUNG GROWTH FOR PULMONARY FUNCTION AFTER BIRTH, HOW DO THESE
KIDS DO AFTER THEY’RE BORN?>>WHAT WAS RECOGNIZED IN
SOME OF THESE BOYS THAT HAD VALVES IS THAT THEY REALLY
DIDN’T HAVE THE ABILITY OR THE AWARENESS THAT
THEIR BLADDER WAS FULL.>>SIXTY PERCENT OF THESE KIDS
THAT WERE TREATED IN UTERO WERE ABLE TO SPONTANEOUSLY
VOID ON THEIR OWN AND THE REST OF THEM EITHER REQUIRED
OCCASIONAL USE OF THE CATHETER TO COMPLETELY EMPTY
THE BLADDER OR THEY WERE CATHETER DEPENDENT.>>LONG-TERM OUTCOME STUDIES
THAT WE HAVE DONE HAVE SHOWN THAT MOST OF THOSE CHILDREN
THAT WERE PRENATALLY TREATED HAVE ACCEPTABLE
RENAL FUNCTION BUT, 30 PERCENT ALSO HAVE
PROGRESSED TO RENAL TRANSPLANT.>>THESE ARE CHILDREN THAT
DON’T HAVE NORMAL URINARY TRACTS AND WILL ALWAYS BE
AT RISK OF FURTHER KIDNEY INJURY EITHER BECAUSE OF
REFLUX OR BECAUSE THEY’RE MUCH, MUCH MORE AT RISK AND
SUSCEPTIBLE TO INFECTIONS.>>THERE ARE CHANGES THAT
CAN OCCUR OVER TIME THAT UNLESS YOU’RE REALLY
TRACKING THEM AND FOLLOWING THEM, YOU MAY NOT RECOGNIZE
WHICH CAN THEN ULTIMATELY LEAD TO DAMAGE
TO THE KIDNEYS.>>HE’S AT INCREASED LEVEL
OF HURTING HIS KIDNEYS IF HE GETS INFECTIONS. HE IS ON AN ANTIBIOTIC.>>THESE BABIES MAY REQUIRE
LONG-TERM FOLLOW-UP FOR THEIR KIDNEY FUNCTION. USUALLY RESPIRATORY ISSUES
ARE MORE BLACK AND WHITE AT THE TIME OF BIRTH.>>HALF OF THEM HAVE SOME
TYPE OF RESPIRATORY SYMPTOMS LONG TERM, LOW
INCIDENCE OF ASTHMA. MOST OF THEM HAVE A HIGHER
FREQUENCY OF REACTIVE AIRWAY DISEASE. SO THEY GET COLDS AND UPPER
RESPIRATORY INFECTIONS MORE OFTEN AND COMMONLY
THAN OTHER KIDS.>>WHILE THAT CERTAINLY
CAN BE A CHALLENGING TIME, MOST FAMILIES AND MOST
CHILDREN WILL REPORT TO US THAT THEY’RE DOING WELL
AND THEY’RE ADJUSTING AND DEALING WITH THE
CHALLENGES OF DAILY LIFE.>>MICHAEL NOW
IS 18 MONTHS OLD. HE IS RUNNING,
NO LONGER WALKS, HE JUST RUNS.>>IF YOU LOOKED AT HIM
TODAY, YOU WOULDN’T KNOW ON THE SURFACE THAT THERE’S
ANYTHING WRONG WITH THE KID. I MEAN, HE EATS LIKE A TANK.>>HE’S JUST A
CRAZY, HIGH-ENERGY BOY. HE’S REALLY INDEPENDENT,
BUT CONTINUES TO BE VERY, VERY HAPPY. SO TO HAVE BEEN ABLE TO GO
THROUGH THIS REALLY CRITICAL SITUATION AND COME OUT ON
THE OTHER SIDE AS HEALTHY AS HE IS, HE’S
JUST SO FORTUNATE.>>WE NOW HAVE A WHOLE
COHORT OF WHAT WERE UNBORN PATIENTS WITH A PREVIOUSLY,
COMPLETELY FATAL DIAGNOSIS WHO HAVE BEEN HELPED BY
WHAT WE AND OTHERS HAVE DONE BEFORE BIRTH.>>THE NATURAL HISTORY
OF LOWER URINARY TRACT OBSTRUCTIONS IS
QUITE DIVERSE.>>WE CONTINUE TO LEARN AND
NOW I THINK WE HAVE A MUCH BETTER
PERSPECTIVE ON THINGS, UNDERSTANDING WHAT HAPPENS
IN TERMS OF HOW THE KIDNEYS ARE DEVELOPING, WHAT
HAPPENS TO THE LUNGS.>>FOR LOWER URINARY
TRACT OBSTRUCTION, WE CAN SELECT WHICH FETUSES
WILL BENEFIT AND WE CAN HELP THEM IN MOST CIRCUMSTANCES.>>THERE ARE LOWER URINARY
TRACT OBSTRUCTIONS THAT ARE ASSOCIATED WITH NORMAL
AMNIOTIC FLUID VOLUME, MAYBE DUE TO AN
INCOMPLETE OBSTRUCTION, AND THOSE AT THIS POINT ARE
NOT CANDIDATES FOR IN UTERO INTERVENTION.>>SO ONE OF THE STUDIES
THAT’S PRESENTLY UNDERWAY, IS TO LOOK AT THE NATURAL
HISTORY OF THE OUTCOMES IN THESE CHILDREN THAT HAVE
OBSTRUCTED UROPATHIES BUT HAVE NORMAL AMNIOTIC FLUID
VOLUME TO DETERMINE WHETHER THERE MIGHT BE BENEFITS FOR
INTERVENING IN THOSE CASES AS WELL.>>A CLINICAL EFFORT AT THE
CURRENT TIME IS TO ATTEMPT BEFORE BIRTH TO DIRECTLY
TREAT POSTERIOR URETHRAL VALVES.>>FETAL CYSTOSCOPY WHERE WE
CAN ACTUALLY LOOK INSIDE THE BLADDER, TRY TO IDENTIFY THE
SOURCE OF THE OBSTRUCTION AND POTENTIALLY TREAT IT,
AND THEN NOT HAVE TO LEAVE A SHUNT IN PLACE AFTERWARDS.>>I THINK THE FUTURE IS
BRIGHT FOR FAMILIES WITH THIS DISORDER.>>THE FAMILIES THAT THE
CENTER FOR FETAL DIAGNOSIS AND TREATMENT REALLY SERVE
AS THE INSPIRATION FOR EACH AND EVERY ONE OF US.>>THAT’S WHAT IT’S
REALLY ALL ABOUT. IT’S ABOUT THE AMAZING
FAMILIES THAT TEACH US WHAT WE NEED TO KNOW TO OFFER
HOPE FOR FUTURE GENERATIONS.

1 thought on “Long-term Outcomes of Children with LUTO and LUTO Research (9 of 9)

  1. I have an appointment with CHOP on July 3rd, 2017 because my baby has this exact condition. I'm praying for a positive outcome.

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