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>> YES, GOOD MORNING; THIS IS STEFANIE KASPERSKI.
I'M ONE OF THE COORDINATORS HERE AT THE CENTER FOR FETAL
DIAGNOSIS AND TREATMENT.
I UNDERSTAND THAT YOU HAVE SOME QUESTIONS.
>> BEFORE A FAMILY EVEN ARRIVES, WE HAVE REVIEWED THEIR PRENATAL
RECORDS AND HAVE SET UP A COMPREHENSIVE EVALUATION THAT
WILL OCCUR IN ONE DAY SO THAT BY THE END OF THE DAY,
THEY'LL HAVE THE ANSWERS THEY NEED TO MAKE THE BEST DECISION
THEY CAN FOR THEIR PREGNANCY.
>> YOU WANT ANSWERS, AND YOU WANT ANSWERS RIGHT AWAY
SO THAT YOU CAN START FEELING LIKE YOU HAVE,
YOU KNOW, A HANDLE ON THE SITUATION.
>> THE DIAGNOSIS CAN BE TRICKY, PARTICULARLY IN THE EARLY -
TO MID - GESTATION.
>> MISDIAGNOSIS CAN OCCUR WITH ANY FETAL DIAGNOSIS AND,
BECAUSE OF THAT, WHENEVER WE'RE REFERRED A PATIENT,
WE ALWAYS REEVALUATE THAT PATIENT WITH OUR OWN IMAGING.
>> --WHICH INCLUDES MATERNAL FETAL ULTRASOUND,
VERY DETAILED, LOOKING AT THE CHARACTERISTICS OF THE TERATOMA
AND ALSO TO MAKE CERTAIN THAT THERE IS NOTHING ELSE WRONG,
AN ULTRA-FAST FETAL MRI, WHICH IS ANOTHER WAY OF GETTING
ANATOMIC INFORMATION, AND THE THIRD CRUCIAL TEST IS A FETAL
ECHOCARDIOGRAM, A LOOK AT THE FETAL HEART JUST TO LOOK
AT FETAL HEART PERFORMANCE IN PARTICULAR.
>> IT WAS ACTUALLY STRANGELY COMFORTING AND MEDITATIVE GOING
THROUGH THE TESTS BECAUSE YOU FELT LIKE THIS PROCESS WAS
STARTING TO HAPPEN AND THAT AT THE END OF THE DAY YOU WERE
GOING TO KNOW SOMETHING.
>> WE THINK IT'S EXTREMELY IMPORTANT FOR THE MOTHER TO HAVE
AT LEAST THE ULTRASOUND, THE MRI AND THE ECHOCARDIOGRAM
DONE IN ONE DAY, ONE AFTER THE NEXT, MEET WITH OUR
GENETIC COUNSELORS, OUR ADVANCED PRACTICE NURSES,
HAVE SOME FINANCIAL COUNSELING, IF NEED BE, AND THEN TO MEET
WITH THE TEAM AT THE END OF THE DAY SO WE CAN REVIEW
THE FINDINGS AND GO THROUGH OUR RECOMMENDATIONS.
>> NO ONE WAS GOING TO TELL ME, "EVERYTHING'S GOING TO BE ALL
RIGHT," BECAUSE THEY COULDN'T TELL ME THAT.
AND NO ONE WAS GOING TO SAY "THIS IS HOW WE THINK THE
TERATOMA'S GOING TO GROW--" BECAUSE THEY COULDN'T TELL
ME THAT.
THEY COULD SAY, "THIS IS HOW WE HOPE IT'S GOING TO BE,
AND WE'RE GOING TO KEEP MONITORING IT.
AND IF IT CONTINUES IN THIS VEIN,
THIS IS WHAT WILL PROBABLY HAPPEN."
BUT, YOU KNOW, AT THAT POINT IN TIME THERE WERE A LOT OF "IFS"
AND A LOT OF QUESTION MARKS.
>> A MAJOR FOCUS OF OUR PROGRAM IS TO PROVIDE EDUCATION
OF FAMILIES.
>> MY QUESTIONS WERE ANSWERED, AND I FELT LIKE WE COULD MOVE
FORWARD AND START MAKING DECISIONS.
AND I ALSO FELT LIKE I NEEDED TO HEAR A VERY SOBERING DIAGNOSIS,
AND I NEEDED TO HEAR WHAT COULD HAPPEN.
>> IT'S VERY IMPORTANT TO US THAT FAMILIES LEAVE HERE KNOWING
WHAT THEIR DIAGNOSIS IS AND HOW BEST TO TAKE CARE OF THEM
THE REST OF THE PREGNANCY.