>> ANY FETUS THAT IS
DIAGNOSED WITH CONGENITAL
HEART DISEASE, WE FOLLOW THEM
AT LEAST EVERY FOUR WEEKS.
>> WE HAVE FAMILIES RETURN
FOR FREQUENT EVALUATION
IN A SERIAL MANNER,
USING FETAL IMAGING,
AND THAT'S AN OPPORTUNITY
TO COMMUNICATE BACK
TO THE PATIENT BUT ALSO
AN OPPORTUNITY FOR US
TO PROVIDE UPDATES TO
OTHER MEMBERS OF THE TEAM
AS WE GO FORWARD.
>> WE CAME EACH
MONTH FOR AN ULTRASOUND.
DR. RYCHIK PERSONALLY
CAME IN AND MET WITH US
EACH TIME.
>> THROUGH THE COURSE OF SERIAL
FETAL ECHOCARDIOGRAPHY,
WE'RE ABLE TO FOLLOW
THAT FETUS' HEART
TO SEE HOW IT'S DEVELOPING,
WHAT CHANGES ARE HAPPENING,
BECAUSE THIS IS A
VERY DYNAMIC PERIOD.
>> EVERY PICTURE IS A
NEW STORY WHAT THE BABY
TRY TO TELL ME.
>> THINGS CHANGE DURING
THE COURSE OF A PREGNANCY.
AS A BABY GROWS,
THINGS CHANGE.
NOT ONLY DO THE LEGS
AND ABDOMEN AND BRAIN
FORTUNATELY GROW, BUT
THE HEART CAN CHANGE.
AND WE WANT TO KNOW AS CLOSE
TO DELIVERY WHAT TO EXPECT,
HOW THIS HEART IS
GOING TO FUNCTION.
>> WE WANT FAMILIES TO HAVE
AN OPPORTUNITY TO LEARN AS
MUCH AS THEY CAN ABOUT THE
BABY'S HEART AND THE DEFECT
AND WHAT THE PLAN FOR
MANAGEMENT IS GOING TO BE.
AND WE FIND THAT WE'RE ABLE
TO BUILD ON OUR DISCUSSIONS
EVERY TIME WE SEE A FAMILY.
>> WE WENT FROM A
HUGE, POWERFUL,
YOU KNOW,
DIAGNOSIS TO A PLAN.
>> FAMILIES WILL
MEET WITH THE SURGEON.
THEY'LL MEET
WITH INTENSIVISTS.
>> THE FAMILIES ALSO CAN
TOUR THROUGH THE ICU SO THEY
HAVE AN IDEA OF WHERE
THE BABY IS GOING TO COME.
AND IF THEY'D LIKE,
THEY CAN MEET WITH ANY
OF THE PRACTITIONERS WHO WILL
BE TAKING CARE OF THE BABY.
>> SO BY THESE LAST
VISITS, THESE FAMILIES,
THEY REALLY COME
TO KNOW US WELL.
WE KNOW THEM WELL.
WE KNOW THE OTHER THINGS
THAT THEY'RE DEALING WITH,
OTHER CHILDREN,
TRAVEL, THINGS LIKE THIS,
AND WE MAKE IT AS
EASY AS WE CAN.
>> SOME FAMILIES ARE
REALLY WORRIED ABOUT
THE SURGERY ITSELF.
SOME FAMILIES ARE WORRIED
ABOUT IS THE BABY GOING TO
BE ABLE TO EAT BY ITSELF,
OR IS IT GOING TO NEED
A FEEDING TUBE?
SOME FAMILIES
ARE WORRIED ABOUT,
YOU KNOW, THE
3-YEAR-OLD SIBLING,
HOW IS THAT
CHILD GOING TO DO?
SOME FAMILIES ARE WORRIED
ABOUT THE LOGISTICS
OF GETTING BACK HOME.
SO EVERYBODY HAS GOT
DIFFERENT CONCERNS,
AND WE HAVE PEOPLE TO
HELP WITH ALL THAT STUFF.
>> WE HAVE A SOCIAL WORKER
THAT WORKS SPECIFICALLY--
WHO'S DEDICATED TO THE
FETAL HEART PROGRAM,
AND SHE'S ABLE TO MEET
WITH FAMILIES BEFORE
DELIVERY OF THE BABY,
BUT SHE'S GOING TO BE AN
IMPORTANT PERSON
TO THEM IN THE ICU.
SO THAT'S
CONTINUITY OF CARE.
>> IT'S IMPORTANT FOR OTHER
SIBLINGS TO BE BROUGHT INTO
THE CIRCLE OF KNOWLEDGE,
AND THAT'S WHERE CHILD LIFE
SPECIALISTS COME INTO PLAY.
>> TO MAKE THEM FEEL
IMPORTANT AND KNOW HOW THEY
CAN HELP CONTRIBUTE TO THE
BABY GETTING WELL AND MAKE
SURE THAT THEY DO OK
THROUGH THIS ENTIRE PROCESS
WITH THE FAMILY.
>> WE DO PROVIDE A LOT OF
SUPPORT FOR THE MOTHERS WHO
WANT TO PROVIDE BREAST MILK.
>> A LOT OF MOMS
COME TO US THINKING,
"I'M JUST NOT GOING TO
BE ABLE TO BREASTFEED
MY BABY."
THAT'S ABSOLUTELY NOT TRUE.
>> NOT ONLY ARE THE NURSES
AT THE BEDSIDE VERY FACILE
AND EDUCATED IN THIS,
BUT THERE'S ALSO A WHOLE
LACTATION SUPPORT SYSTEM.
>> WE HAVE A LACTATION
SPECIALIST THAT'S GOING TO
WORK WITH THOSE MOTHERS,
AND THEN THAT LACTATION
SPECIALIST WILL WORK WITH
THE MOTHER AFTER THE BABY
IS BORN IN THE ICU.
SO AGAIN, IT'S THAT
CONTINUITY OF CARE.
>> THE EXPERIENCE
WAS UNBELIEVABLE.
WE FELT AS THOUGH WE COULD
CALL ANYBODY HERE AT ANY
POINT TO GET INFORMATION,
ASK ANY KIND OF QUESTION.
>> WE WANT TO BE ABLE TO
CREATE A SITUATION WHERE
AS MUCH INFORMATION
CAN BE CONVEYED,
KNOWLEDGE CAN
BE TRANSMITTED,
AND THE HANDS OF THESE
FAMILIES HELD AS THEY GO
THROUGH THIS PROCESS.
