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>> HAVING EVERYONE HERE ON THE TEAM HERE AS A SUPPORT
SYSTEM TO HOLD YOU UP IS SO CRITICAL BECAUSE FROM
THE BEGINNING, WE FELT LIKE WE WERE A TEAM.
CERTAINLY, BY NO MEANS ARE WE DOCTORS OR NURSES
OR MEDICAL PROFESSIONALS, BUT THEY TOOK EVERY EFFORT,
EVERYONE ON OUR TEAM, TO MAKE US UNDERSTAND,
IN OUR OWN LANGUAGE, WHAT WE WERE GOING THROUGH
AND TO MAKE US FEEL LIKE WE WERE A PART OF ALL DECISIONS.
>> WHAT WE'RE TRYING TO DO IS TO EDUCATE THEM ABOUT
THE DIAGNOSIS AND PREPARE THEM FOR WHAT THEIR LIFE
AND THEIR CHILD'S LIFE IS GOING TO LOOK LIKE,
NOT ONLY IN THE SHORT TERM BUT IN THE LONGTERM,
SO THAT SOME OF THOSE FEARS AND ANXIETIES OF THE UNKNOWN
WE CAN PUT AWAY FOR THEM.
WE WANT TO TALK ABOUT EPIDURALS.
WE WANT TO TALK ABOUT PAIN MANAGEMENT IN LABOR.
WE WANT TO TALK ABOUT, YOU KNOW,
FOOTPRINTS AT BIRTH.
WE WANT TO TALK ABOUT WEIGHT.
WE WANT TO TALK ABOUT ALL OF THINGS THAT EVERY OTHER MOM
AND DAD TALK ABOUT AND TRY TO TAKE AWAY THE FEAR
AND THE ANXIETY OF THE UNKNOWN RELATED TO THE DIAGNOSIS
IN THE BABY.
>> SO WHAT MAKES THE SPECIAL DELIVERY UNIT UNIQUE
IS THAT WE ARE TREATING ADULTS WITHIN A PEDIATRIC
INSTITUTION.
SO THE UNIT ITSELF IS VERY CALMING;
IT'S VERY WARM.
THE COLORS ARE PICKED ON PURPOSE TO HELP FAMILIES
FEEL AT PEACE WHEN WE COME TO DELIVER SO THAT THEIR
EXPERIENCE OF CHILDBIRTH BRINGS JOY AND SECURITY
AND COMFORT, DESPITE THE CIRCUMSTANCES OF HAVING
A BABY WITH A FETAL ANOMALY.
THE ROOMS IN THE SPECIAL DELIVERY UNIT ARE ABLE
TO ACCOMMODATE FAMILY MEMBERS TO BE ABLE TO VISIT.
THEY'RE ABLE TO HAVE SIBLINGS THAT COME INTO
THE ROOM TO SPEND TIME WITH THEIR PARENTS,
AND THAT REALLY HELPS FAMILIES STAY TOGETHER
DURING A REALLY DIFFICULT TIME.
>> IT'S A HUGE BENEFIT FOR MOTHERS AND FATHERS TO BE
ABLE TO BE GEOGRAPHICALLY CLOSE TO THEIR BABIES.
>> AS A PEDIATRIC SURGEON, I OFTEN RECEIVE PATIENTS
FROM OTHER HOSPITALS.
>> AND INVARIABLY, THERE'S SEPARATION BETWEEN THE BABY
AND THE MOTHER.
THE FATHER CAN GO BACK AND FORTH;
THE MOTHER IS USUALLY STUCK AT THE REFERRING HOSPITAL
FOR A DAY OR MORE.
>> I WAS INCREDULOUS THAT I COULDN'T DELIVER
AT THE CHILDREN'S HOSPITAL AND THAT THERE WOULD BE
TWO TEAMS OF DOCTORS--
>> IT DOESN'T MATTER WHETHER YOU'RE A BUILDING AWAY
OR FIVE STATES AWAY.
YOU'RE SEPARATED FROM THE BABY.
>> AND I THINK THAT'S AN AWFUL EXPERIENCE
FOR PARENTS.
AND ONE OF THE REAL ADVANTAGES OF THE SDU
IS THAT YOU'RE HERE WITH THE BABY.
>> OPTIMAL CARE INVOLVES THE PARENTS BEING ABLE
TO PARTICIPATE FROM MINUTE ONE.
>> BECAUSE OF WHAT WE DO AND THE VERY SPECIALIZED NATURE
OF IT, UNFORTUNATELY MANY OF OUR FAMILIES ARE FACED
WITH MAKING VERY DIFFICULT DECISIONS.
>> WE WEREN'T SURE WHETHER EMILY WAS GOING
TO SURVIVE BIRTH.
AND SHE LIVED FOR THREE DAYS,
AND WE GOT TO HOLD HER, AND WE GOT TO SPEND TIME
WITH HER.
AND IT WAS A VERY, VERY SPECIAL TIME.
>> THE PAIN, YOU KNOW, OF IMPENDING LOSS
BECAUSE I HAD THE DIAGNOSIS WAS SO PROFOUND.
>> SOMETIMES FAMILIES COME INTO THE CENTER,
AND THEY RECEIVE A DIAGNOSIS THAT MAY BE NOT VIABLE
WITH LIFE.
AND SO THAT'S WHEN OUR PERINATAL PALLIATIVE CARE
AND BEREAVEMENT PROGRAM STEPS IN TO HELP SUPPORT
FAMILIES WITH DECISION MAKING AROUND HOW THEY WISH
THAT BIRTH TO OCCUR.
>> WE WANT THEM TO FACE THE BIRTH OR HOWEVER MUCH TIME
THEY'RE ABLE TO SPEND WITH THEIR SON OR DAUGHTER
WITH DIGNITY AND APPRECIATE THAT TIME,
WHETHER IT'S THEIR TIME THAT THEY GET TO SPEND TOGETHER
WHILE THE BABY IS STILL ON THE INSIDE OR IF IT'S A FEW
SHORT MINUTES THAT THE BABY IS WITH US HERE
IN THE SPECIAL DELIVERY UNIT.
>> SO HELPING FAMILIES BEING ABLE TO LET GO,
BEING ABLE TO HAVE FAMILIES HAVE CLOSURE AND HELP THEM
AT THE TIME OF WITHDRAWAL IS ALSO REALLY CRITICAL
TO THE CARE THAT WE PROVIDE.