Tip:
Highlight text to annotate it
X
>> THERE IS NOTHING MORE DIFFICULT FOR A FAMILY
TO COPE WITH THAN THE UNKNOWN.
AND IF THEY ARE FACED WITH A SITUATION THAT IS VERY
NEBULOUS, THAT CAN GO EITHER WAY WITHOUT GOOD
UNDERSTANDING OF WHAT THE POSSIBILITIES ARE,
THE FAMILY WILL HAVE A MUCH MORE DIFFICULT TIME COPING
AND MAKING A DECISION.
>> GIVING PARENTS A SENSE OF CONTROL IS VITAL,
BUT IT'S REALLY VERY DIFFICULT TO DO.
>> WHEN YOU THINK ABOUT IT, IF YOU'RE A MOM IN ST. LOUIS
AND YOU GO TO SEE THE OBSTETRICIAN TO FIND OUT HOW
THE FETUS LOOKS, WHETHER YOU'RE GOING TO HAVE A BOY
OR A GIRL, AND YOU'RE TOLD THAT THE BABY
HAS A DEVASTATING BIRTH DEFECT, I MEAN,
THAT'S A BIG LOAD.
THEN TO BE TOLD, WELL, YOU NEED TO GO TO PHILADELPHIA
TO BE ASSESSED AND POSSIBLY RECEIVE FETAL THERAPY.
I MEAN, YOU CAN IMAGINE WHAT THAT'S LIKE
FOR THE FAMILIES.
>> ONE OF THE VITAL THINGS ABOUT THIS CENTER IS THAT WE
HAVE THE TIME AND THE DESIRE TO REALLY PROVIDE EVERY
DETAIL OF INFORMATION THAT WE CAN FOR FAMILIES SO THAT
THEY HAVE THE ENTIRE PICTURE OF WHAT THEY'RE DEALING WITH,
WHAT THE DIAGNOSIS IS, WHAT THE PROGNOSIS IS,
WHAT OPTIONS ARE AVAILABLE FOR THEM FOR TREATMENT,
AND THEN WHAT THE COMPLICATIONS AND RISKS
OF THOSE TREATMENTS COULD BE, AND WHAT THE POTENTIAL
OUTCOMES WILL BE.
>> WE TRY AND CRAFT THINGS SO THAT THE FAMILIES' NEEDS
ARE MET.
>> TO LOOK AT ANY BARRIERS THAT MIGHT EXIST IN TERMS
OF THEIR ABILITY TO MAKE A DECISION ABOUT WHICH
PROCEDURE OR IF ANY PROCEDURE TO HAVE
AND WHAT MIGHT BE THE BEST FOR THEM.
>> EACH INDIVIDUAL FAMILY NEEDS TO MAKE A DECISION ON
ITS OWN AS TO WHAT WORKS BEST FOR THEM.
DO THEY PROCEED WITH A PROCEDURE?
DO THEY TERMINATE A PREGNANCY?
WHICH FOR SOME FAMILIES THAT MAY BE THE OPTION.
DO THEY STAY HERE IN PHILADELPHIA?
DO THEY GO HOME TO THEIR REFERRING PHYSICIAN
IN THEIR HOMETOWN?
>> THE DECISION THAT'S BEST FOR ONE FAMILY MAY BE
COMPLETELY DIFFERENT THAN A DECISION THAT IS MADE
BY ANOTHER FAMILY IN THE EXACT SAME SITUATION.
>> SO IT'S REALLY OUR JOB TO EXPLAIN WHAT THE OPTIONS ARE
IN A WAY SO THAT THEY CAN MAKE THE BEST CHOICES
FOR THEMSELVES AND THEIR FAMILY.