Portraits of Life, Love & Legacy Through Pediatric Palliative Care


♪ ♪ ♪ ♪ IN THIS FILM, THE STORY OF PEDIATRIC PALLIATIVE CARE WILL BE TOLD BY SEVEN FAMILIES: THE BISHOPS, THE BEATTYS, THE PEREZES, THE WISNIEWSKIS, THE RABERS, THE HICKMANS, AND HOPFES. THESE FAMILIES REPRESENT SOME OF THE DIVERSITY OF PALLIATIVE CARE. CHILDREN OF DIFFERENT AGES, DIFFERENT DIAGNOSES AND CIRCUMSTANCES. THEY OPEN THEIR HEARTS TO SHARE THEIR REALITIES OF THEIR LIVES, THEIR STRUGGLES, AND THEIR JOYS. PERSPECTIVES ARE ALSO SHARED BY TEAM MEMBERS OF THE HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER AT AKRON CHILDREN’S HOSPITAL. CAREGIVERS OF MANY DIFFERENT DISCIPLINES DISCUSS THEIR RELATIONSHIPS WITH THE SEVEN FAMILIES AND THE ROLES THEY PLAY IN THEIR CARE. IF YOU HAD TO DISTILL IT INTO ONE SENTENCE, PEDIATRIC PALLIATIVE CARE IS REALLY ABOUT AMELIORATING SUFFERING. THEY’RE LIKE A WARM BLANKET AROUND YOUR BABY. NO MATTER WHAT YOUR BABY IS GOING THROUGH, THEY ARE, THEY ARE THERE SURROUNDING THAT CHILD AND EVERY CHILD IS TREATED
LIKE AN INDIVIDUAL. WE SEE CHILDREN WHO HAVE A LOT OF NEEDS IN THEIR LIFE THAT OTHER CHILDREN AREN’T GOING TO HAVE, SO TO PALLIATE FOR THEM MEANS SOMETHING
DIFFERENT FOR EVERY CHILD. IT’S TO EASE THE BURDENS, AND
THAT’S WHAT WE’RE THERE FOR. WE’RE NOT ONLY THERE TO
EASE THE MEDICAL BURDENS; WE’RE THERE TO EASE THE SOCIAL BURDENS, THE FINANCIAL BURDENS, THE EMOTIONAL AND SPIRITUAL BURDENS. WE FREQUENTLY LIKEN WHAT WE DO TO A PALETTE OF CARE. (Sarah Friebert, MD)
A PALETTE, AN ARTIST’S PALETTE WITH ALL OF ITS DIFFERENT
COLORS ON IT REALLY REPRESENTS ALL OF
THE DIFFERENT FACETS OR DISCIPLINES OR
SUBSPECIALTIES THAT WE BRING TOGETHER
TO THE CARE OF A CHILD WITH A LIFE-THREATENING
CONDITION. EVERY FAMILY USES DIFFERENT
PARTS OF OUR TEAM DIFFERENTLY, AND THEY MAKE
THEIR OWN PICTURE. SO THEY MIGHT USE A LOT
OF THE MEDICAL PIECE AND MAYBE JUST A LITTLE BIT
OF THE SPIRITUAL PIECE. OR THEY MAY USE A LOT OF
THE SOCIAL WORKER PIECE AND THE PSYCHOSOCIAL TEAM AND JUST A LITTLE BIT
OF THE MEDICAL TEAM. AND SO EACH PICTURE IS
DIFFERENT AND THAT’S, WE’RE ALL HERE FOR THEM
ON A TRAY AND THEY GET TO PICK
WHAT THEY WANT. PEDIATRIC PALLIATIVE CARE BEGINS AT THE TIME OF INITIAL DIAGNOSIS OF A LIFE-THREATENING OR SERIOUS ILLNESS, AND CONTINUES THROUGHOUT THE JOURNEY TO CURE OR TO DEATH AND BEREAVEMENT, IF THAT OCCURS. PALLIATIVE CARE INVOLVES BOTH COMFORT-ORIENTED AND CARE-DIRECTED THERAPY, IN WHICH PROVIDERS PARTNER WITH FAMILIES TO HELP THEM NAVIGATE A COMPLEX HEALTH CARE SYSTEM, AND MAKE THE BEST POSSIBLE DECISIONS ABOUT THEIR CHILDREN’S CARE. PALLIATIVE CARE IS
MY GO TO TEAM. YOU KNOW, YOU’RE NOT
JUST A NUMBER; YOU MEAN SOMETHING TO THEM. THEY’RE CARING FOR
OUR CHILD AND FOR US AND HELPING US LIVE LIFE
EVERY DAY THE BEST THAT WE CAN. JUST WHEN YOU THINK THAT
THEY’VE DONE EVERYTHING THAT THEY COULD DO AND THAT THEY HAVE
SERVICED YOU IN EVERY WAY, THEY GO ABOVE AND BEYOND AND DO SOMETHING THAT
YOU JUST CAN’T BELIEVE. PALLIATIVE CARE IS
A DISCIPLINE, IT’S A MEDICAL SPECIALTY. IT IS BOARD CERTIFIED. NURSING HAS SPECIAL
CERTIFICATIONS, DOCS HAVE SPECIAL TESTS
THEY HAVE TO TAKE AND NOW HAVE TO
HAVE FELLOWSHIPS, SO IT IS AS A SUBSPECIALTY
AS PULMONARY. BUT WHAT WE DO IS SO INTIMATE
THAT FAMILIES HAVE TO LET US INTO PIECES AND PARTS
OF THEIR LIVES THAT NOBODY BUT OTHER
FAMILY MEMBERS GET TO SEE, AND THAT SACRED
RELATIONSHIP AND AGREEMENT THAT WE MAKE WITH THIS FAMILY
THAT WE ARE GOING TO BE YOUR PALLIATIVE CARE
PROFESSIONAL AND WALK THIS JOURNEY WITH YOU IS
UNIQUE IN MEDICINE. MORGAN BISHOP WAS BORN INTO A LOVING FAMILY. HER FATHER KENAN, HER MOTHER DENICA AND HER BIG SISTER SKYLAR DIDN’T SUSPECT ANYTHING WAS WRONG WHEN MORGAN WAS BORN A CALM, PEACEFUL BABY. GENETIC AND NEUROMUSCULAR TESTING BROUGHT BACK A DIAGNOSIS OF SPINAL MUSCULAR ATROPHY TYPE I, A FATAL ILLNESS. CHILDREN WITH SMA TYPE I HAVE GENERALIZED MUSCLE WEAKNESS. MOST IMPORTANTLY, THEY HAVE TROUBLE EATING AND BREATHING ON THEIR OWN. AFTER MISTAKENLY RECEIVING NORMAL TEST RESULTS AND BREATHING A GREAT SIGH OF RELIEF, HER FAMILY WAS DEVASTATED TO LEARN THAT INDEED MORGAN HAD SMA TYPE I, WOULD NEVER WALK OR TALK, AND MIGHT NOT EVEN LIVE ‘TIL HER SECOND BIRTHDAY. PALLIATIVE CARE WAS CONSULTED DURING THE HOSPITAL VISIT IN WHICH SHE WAS DIAGNOSED TO PROVIDE SUPPORT TO THE FAMILY IN THE WAKE OF THE DIAGNOSIS AND TO ASSIST THE FAMILY AS THEY BEGAN THEIR JOURNEY THROUGH THE HEALTHCARE SYSTEM. MY WORLD WAS SHATTERED. AND SO… I’M IN A HOSPITAL ROOM, AND, I’M JUST SO ANGRY, AND JUST CRYING AND
YELLING AND SCREAMING, HOW COULD THIS HAPPEN? AND AT THAT POINT I DIDN’T WANT TO
HEAR FROM ANYBODY. I WAS DONE, I WAS DONE
WITH THE HOSPITAL, I WAS DONE WITH EVERYBODY. IT WAS JUST, YOU DON’T KNOW
WHAT YOU’RE DOING. I THINK THAT IT’S VERY DIFFICULT FOR THAT FIRST DOCTOR OR FIRST NURSE WHO HAS TO TELL A FAMILY A DIAGNOSIS. WE HAVE TO FIRST OF ALL
JUST RECOGNIZE THAT, SO IF YOU’RE THE FIRST PERSON, IT’S LIKE, OKAY,
WHAT AM I GOING TO SAY? I’M GOING TO BE CAREFUL
ABOUT WHAT I SAY AND A LOT OF TIMES
IT’S GOING TO BE JUST A BEGINNING PART
OF THE STORY. THE COMMUNICATION ON
MY PART WAS CLOSED. I WASN’T REALLY TRYING
TO TALK WITH ANYONE, AND THE NICEST WOMAN
CAME INTO OUR ROOM, AND THIS WAS DR. FRIEBERT. I THINK SOMETIMES WE HAVE
THE OPPORTUNITY TO MEET FAMILIES WHEN THEY ARE
IN THE THROES OF THEIR WORST NIGHTMARE, AND OFTENTIMES THAT’S
ACCOMPANIED BY ANGER FOR VARIOUS REASONS, AND ONE OF THE THINGS THAT
WE REALLY STRIVE TO DO IS TO BE PRESENT WITH FAMILIES AND FOR THEM TO
FEEL SAFE TO FEEL THAT AND EXPRESS IT
WITHOUT JUDGMENT. AND I SAID, PALLIATIVE CARE? WHAT IS THIS, BABY HOSPICE? AND YOU KNOW, WHEN YOU
THINK HOSPICE, YOU THINK MORPHINE DEATH. PEOPLE MESH HOSPICE AND
PALLIATIVE CARE AND DON’T SEE THAT DIVISION
BETWEEN HOSPICE CARE, WHICH IS INCREDIBLY IMPORTANT, AND NOT HOSPICE
PALLIATIVE CARE. SO I THINK THAT’S REALLY
THE NUMBER ONE MYTH THAT WE FACE IS THAT WHEN
YOU HEAR THE WORD PALLIATIVE IT’S A SECRET CODE WORD
FOR HOSPICE, WHICH IS A SECRET CODE WORD
FOR LOSS OF HOPE, GIVING UP, ABANDONING – ALL THOSE SORTS OF
NEGATIVE THINGS. AND DR. FRIEBERT AND HER TEAM, THEY WERE ABLE TO SKILLFULLY,
MASTERFULLY… YEP. WORK AROUND
OUR ATTITUDES AND OUR PRECONCEIVED
NOTIONS TO BECOME THE BEST,
BEST FRIENDS, BEST ADVOCATES THAT WE COULD HAVE
EVER ASKED FOR. TYLER BEATTY HAD A NORMAL BIRTH AND LIVED THE LIFE OF A TYPICAL CHILD WITH HIS FATHER CHRIS AND HIS MOTHER CARA FOR HIS FIRST THREE YEARS, UNTIL THEY LEARNED HE HAD A TUMOR IN HIS HEAD THE SIZE OF A SOFTBALL. HE WOULD HAVE DIED WITHOUT SURGERY, BUT DUE TO THE TUMOR SIZE AND LOCATION IN THE BRAIN, TYLER WOULD NEVER BE THE SAME. DAMAGE TO THE BRAIN WAS INEVITABLE, AND THERE WOULD BE NUMEROUS SIDE EFFECTS FROM THE SURGERY, PRIMARILY ARISING FROM DAMAGE TO THE HYPOTHALAMUS, THE PART OF THE BRAIN THAT CONTROLS BODY TEMPERATURE, HUNGER, THIRST, FATIGUE, AND SLEEP CYCLES. PALLIATIVE CARE WAS CONSULTED SOON AFTER SURGERY TO PROVIDE SUPPORT, ASSIST WITH PAIN AND SYMPTOM MANAGEMENT, AND TO COORDINATE HIS CARE. WE CAME IN THE HOSPITAL WITH
OUR THREE-AND-A-HALF-YEAR-OLD NORMAL, TYPICAL CHILD, AND
WE’RE LEAVING THE HOSPITAL INTO THIS WORLD OF COMPLETELY
UNKNOWN THAT, WE WERE SO LOST AS PARENTS, BUT JUST AS, WE WERE SO OVERWHELMED WE DIDN’T KNOW WHAT THE FUTURE WAS GOING TO BRING, AS HE COULDN’T EVEN
HOLD HIS HEAD UP. AND SO HERE YOU HAVE YOUR THREE-AND-A-HALF-YEAR-OLD
CHILD WHO WAS RUNNING AND LAUGHING AND PLAYING AND NOW SIX MONTHS LATER
ALMOST LIKE A BABY AGAIN. WHEN TYLER WAS FIRST DIAGNOSED
I WAS JUST VERY NUMB. I THINK EVERYBODY WAS IN A LITTLE BIT
OF DENIAL ABOUT, OH, HE’S GOING TO BE FINE. THEY’LL GET THE TUMOR,
HE’LL BE FINE. AND NOT REALIZING THAT IT’S JUST A COMPLETELY
DIFFERENT EXPERIENCE AFTER THAT DAY, AND YOU HAVE, LIKE
IN MY MIND, WE HAVE JUNE 21ST AND THEN
JUNE 22ND OF ’04. IT IS A GRIEVING PROCESS BECAUSE WHEN YOU
HAVE SOMETHING THAT CATASTROPHIC
HAPPEN TO YOU, YOU GRIEVE FOR THE CHILD AND THE THINGS THAT
WILL NEVER HAPPEN. I KNOW FOR ME THAT’S,
AS A MOM, I THINK THAT’S WHAT’S
BEEN SO HARD IS KNOWING TYLER WON’T GO TO COLLEGE,
AND HE WON’T GET MARRIED, AND HE WON’T HAVE KIDS, AND DEALING WITH THAT IS
HARD, BUT THEY HELP. YOU KNOW, HAVING
DR. GERAK ON THE TEAM HAS HELPED IMMENSELY
TO JUST BE ABLE TO WALK THROUGH THIS AND
TALK THROUGH IT, AND SOMETIMES JUST TO HAVE A SAFE PLACE
TO GO AND SAY, THIS JUST REALLY SUCKS
AND I HATE IT. I FIND WITH A LOT OF FAMILIES, YOU KNOW, BUT CARA’S FAMILY IS INDICATIVE OF, THEY CAN BE IN SUSPENDED ANIMATION FOR A LONG TIME. YOU KNOW, SOMETIMES IT’S A SHORT TIME, COUPLE DAYS, OR COUPLE WEEKS DURING THE MIDDLE
OF THE TRAUMA, OR AS THE CHILDREN ARE HEALING,
AND SOMETIMES FOR YEARS, AND I THINK IT’S VERY HARD
FOR FAMILIES AND PATIENTS TO LIVE IN THE PRESENT,
AND LIVE LIFE FULLY WHILE MAKING SENSE
OUT OF THE PAST AND KNOWING THAT THE FUTURE MAY
OR MAY NOT BE GUARANTEED. (Cara) THEY ALWAYS ASK, LIKE, WHEN WE
SEE DR. FRIEBERT OR DR. CATHY, HOW ARE YOU, TYLER? AND HOW ARE YOU GUYS? AND ARE YOU THINKING
ABOUT GOING ON VACATION AS A FAMILY THIS SUMMER? AND THERE ISN’T A TIME
THAT DOESN’T GO BY WHERE THEY DON’T LOOK AT US AS
A WHOLE AND MAKE SURE THAT EACH ONE OF US IS OKAY,
NOT JUST TYLER, BECAUSE THEY SEE US AS
A THREE…PUZZLE ALMOST, LIKE THERE’S TYLER, CHRIS
AND CARA, AND IN ORDER TO MAKE EVERYBODY OKAY,
WE ALL HAVE TO BE OKAY. IT’S ABOUT
FAMILY-CENTERED CARE. IT’S NOT JUST ABOUT THE PATIENT
AND THE PARENT, IT’S ABOUT THE SIBLINGS,
IT’S ABOUT THE GRANDPARENTS, IT’S ABOUT THE AUNTS
AND UNCLES, IT’S ABOUT THE COMMUNITY THAT THE CHILD LIVES IN, SO WHEN I SAY FAMILY-CENTERED I MEAN THE ENTIRE FAMILY, INCLUDING THE PETS. THERE’S A FINE BALANCE BETWEEN
RECOGNIZING THAT PARENTS ARE THEIR CHILDREN’S
BEST ADVOCATES AND KNOW THEIR CHILDREN BEST AND PUTTING TOO MUCH
RESPONSIBILITY ON THEM THEREFORE,
TO MAKE DECISIONS. SO SOMEWHERE IN THE MIDDLE
IS PARTNERSHIP. KATHARINE PEREZ WAS WELCOMED INTO THE WORLD BY HER MOTHER VIANETT, HER FATHER SALVADOR, AND HER BIG BROTHERS CARLOS AND ANTHONY. KATHARINE WAS BORN WITH A BRAIN MALFORMATION RESULTING IN A SEVERE SEIZURE DISORDER. SHE IS DEVELOPMENTALLY DELAYED AND HAS SERIOUS MEDICAL PROBLEMS. BECAUSE SHE CANNOT EAT ORALLY, SHE HAS A FEEDING TUBE. DUE TO HER CHRONIC RESPIRATORY FAILURE, SHE HAS A TRACHEOSTOMY AND A HOME VENTILATOR. IN SPITE OF ALL THESE SPECIAL NEEDS, HER FAMILY IS NOW, AND HAS ALWAYS BEEN, COMMITTED TO CARING FOR HER AT HOME. PALLIATIVE CARE WAS CONSULTED SOON AFTER KATHARINE’S BIRTH WHEN IT WAS DETERMINED KATHERINE’S BRAIN DISORDER AND SEIZURES WOULD BE DIFFICULT TO MANAGE. THEY WERE CONSULTED TO PROVIDE SUPPORT, BUT WERE ALSO ASKED TO HELP DETERMINE THE FAMILY’S HOPES AND GOALS FOR KATHARINE, AND TO PREPARE THEM FOR DIFFICULT DECISIONS THAT WERE FORTHCOMING. THEY SPOKE SOME ENGLISH BUT WE REALLY HAD A CONCERN ABOUT THE LANGUAGE BARRIER BEING A HINDRANCE TO FULL UNDERSTANDING, SO THERE WERE SEVERAL
MEETINGS WITH AN INTERPRETER JUST TO MAKE SURE THAT THEY
REALLY UNDERSTOOD WELL WHERE THINGS WERE
WITH HER CONDITION AND WHAT DID THAT MEAN
IN THE BIGGER PICTURE AND LONGER-TERM FOR
HER QUALITY OF LIFE. [speaking Spanish] (Marlene Hardy-Gomez) IT WAS SO CLEAR TO ME
WHEN I HEARD FROM THEM THAT WHATEVER THEY NEEDED TO DO
TO CARE FOR THEIR DAUGHTER IT WAS VERY MUCH THAT’S
WHAT THEY WERE GOING TO DO NO MATTER HOW HARD IT WAS AND SO FROM THERE ON IT WAS,
OKAY, WHAT DO WE NEED TO DO TO HELP AND SUPPORT THEM
THE BEST WAY THAT WE CAN AND MAKE THAT HAPPEN? BECAUSE THAT WAS THE RIGHT
DECISION FOR THEM. KASSIE RABER IS AN ELEVEN-YEAR-OLD GIRL WHO LIVES AT HOME WITH HER MOTHER TINA AND HER TWO BROTHERS DYLAN AND JASON. KASSIE WAS DIAGNOSED AT BIRTH WITH CONGENITAL CYTOMEGALOVIRUS. IN OTHER WORDS SHE HAD BEEN INFECTED WITH THIS VIRUS PRIOR TO HER BIRTH. AS A RESULT SHE HAS CEREBRAL PALSY, INTELLECTUAL DISABILITY AND HYDROCEPHALUS (THAT’S INCREASED FLUID IN HER BRAIN). THE PALLIATIVE CARE TEAM MET KASSIE WHEN SHE WAS THREE YEARS OLD, AFTER MULTIPLE ADMISSIONS FOR PNEUMONIA AND A PROLONGED STAY IN THE INTENSIVE CARE UNIT. AT THAT TIME HER FAMILY FELT STRONGLY THAT THEY DID NOT WANT HER TO HAVE A TRACHEOSTOMY OR A VENTILATOR. BUT WHEN KASSIE’S CHRONIC RESPIRATORY FAILURE BECAME INCREASINGLY LIFE-THREATENING HER FAMILY CHANGED THEIR MINDS AND OPTED FOR THE TRACHEOTOMY AND VENTILATOR. KASSIE HAS A LOT OF PERSONALITY ONCE YOU GET TO KNOW HER. SHE’S NOT EASY TO UNDERSTAND IF YOU’RE A STRANGER
COMING OFF THE STREET, BUT SHE IS ORNERY
ONCE YOU GET TO KNOW HER. SHE IS A SPOILED LITTLE
PRINCESS. WE HAVE TWENTY HOURS OF NURSING
IN OUR HOUSE A DAY AND WE HAVE NO PRIVATE LIFE
BUT THAT’S JUST HOW IT IS. A TYPICAL DAY OF
CARING FOR KASSIE, SHE HAS A LOT OF TREATMENTS. SHE GETS VEST THERAPY,
SHE GETS A LOT OF MEDS. BASICALLY EVERY TWO HOURS THERE’S A MEDICINE
TO BE GIVEN TO HER. SHE GETS SUCTIONED A LOT
THROUGH HER TRACH. SHE GETS TWO PAINS EVERY
FOUR HOURS. SHE’S A VERY BUSY LITTLE GIRL. KASSIE IS NOT HOUSEBOUND. IF WE WANT TO TAKE
A FAMILY OUTING, WE TAKE CASSIE WITH US. KASSIE IS VERY MUCH
A PART OF OUR FAMILY. WE TAKE HER
EVERYWHERE WITH US. IF WE GO TO THE ZOO
KASSIE GOES TO THE ZOO. WE WENT TO MYRTLE BEACH. KASSIE WENT TO MYRTLE BEACH
WITH US, AND WE DIDN’T TAKE A NURSE. KASSIE WENT WITH US. IT’S JUST OUR FAMILY. THE BAGGAGE THAT COMES
WITH KASSIE, USUALLY WE END UP WITH ABOUT
TWO OR THREE DIAPER BAGS, A VENTILATOR,
A SUCTION MACHINE. IF IT’S A DAY OUTING,
THAT’S OUR DAY OUTING. IF WE’RE TAKING VACATION,
WE END UP RENTING A U-HAUL. SHE’S A BIG PART OF OUR FAMILY
AND I THINK IF ANYTHING EVER HAPPENED TO HER
THERE’D BE A LOT MISSING. ADDISON WISNIEWSKI IS AN ELEVEN-YEAR-OLD GIRL WITH A SPARKLING SMILE AND PERSONALITY TO MATCH. SHE LIVES AT HOME WITH HER MOTHER ANDREA, HER FATHER JOHN, AND HER EIGHT-YEAR-OLD SISTER HARPER. SHE WAS BORN WITH A GENETIC BONE DISORDER CALLED OSTEOGENESIS IMPERFECTA TYPE IV, OR OI, WHICH IS SOMETIMES REFERRED TO AS BRITTLE BONE DISEASE. OI TYPICALLY RESULTS IN BONES FRACTURING EASILY, BONE DEFORMITY, SHORT STATURE, AND THE POSSIBILITY OF EARLY HEARING LOSS. ALTHOUGH ADDISON WAS DIAGNOSED AT AN EARLY AGE, THE PALLIATIVE CARE TEAM FIRST MET THE FAMILY WHEN ADDISON WAS NINE YEARS OLD TO HELP WITH PAIN MANAGEMENT AS A RESULT OF HER MULTIPLE FRACTURES. EVERY DAY OF MY LIFE I HAVE
A LOT OF PAIN AND I KIND OF JUST HAVE TO DEAL WITH IT BECAUSE REALLY, LIKE, I HAVE TO GO ON AND HAVE A GREAT DAY. I BREAK REALLY EASILY, SO IF I GET A LITTLE COUGH I CAN BREAK MY RIBS. IF I SNEEZE TOO HARD I’LL BREAK MY RIBS. SO IF I HAVE A BROKEN BONE
IT’S HARD A LOT OF TIMES BECAUSE I’M IN A LOT OF PAIN. SOMETIMES IF WE’RE
PLAYING SOMETHING, OR WE’RE DOING
SOMETHING TOGETHER AND SHE’S LIKE, HER BONES, LIKE HER, OR SHE’S NOT FEELING
WELL, SHE HAS TO GO IN AND THAT JUST KIND OF
MAKES IT HARDER. THE THING WITH ADDIE
IS THAT THERE’S, ANY MOMENT ANYTHING CAN
CHANGE AT ANY GIVEN MOMENT. THE DAY COULD BE GOING REALLY
WELL AND THEN ALL OF A SUDDEN ONE LITTLE WRONG MOVEMENT
AND SHE HAS A FRACTURE. I’VE BROKEN PROBABLY
OVER A HUNDRED BONES AND UHM, I’VE BROKEN MY FEMURS,
I BREAK RIBS A LOT. I’VE BROKEN ARMS,
ANKLES, FEET- – PRETTY MUCH ANYTHING YOU
CAN THINK OF, I’VE BROKEN. MY MOM’S FRIEND SUGGESTED
PALLIATIVE CARE BECAUSE SHE THOUGHT THAT THEY
COULD REALLY HELP ME WITH MY EVERYDAY BONE PAIN. AND WHEN I FIRST MET
PALLIATIVE CARE, I TALKED TO DR. HIRSH, AND THEY’VE BEEN HELPING ME
WITH MY PAIN EVER SINCE THEN. RECENTLY ADDIE’S BEEN
DEALING WITH A LOT OF PAIN, MORE THAN HER NORMAL, SO THEY ASSISTED US WITH SOME
MEDICATIONS THAT ARE REALLY HELPING HER LIVE A MORE
NORMAL LIFE. THIS IS THE BEST
SHE’S FELT IN YEARS. WE’RE ALL JUST REALLY
THRILLED, HUH, ADD? BECAUSE SHE’S BEEN REALLY, REALLY NOT
FEELING GOOD. COULDN’T EVEN GO TO SCHOOL, AND SO
THE LAST COUPLE OF… YOU’RE NOT SUPPOSED
TO CRY. I’M SORRY. (Sarah Friebert, MD)PAIN AND SYMPTOM MANAGEMENT ARE CORE TO PEDIATRIC PALLIATIVE CARE AND PALLIATIVE CARE IN GENERAL. IF YOU HAVE A CHILD
WHO’S IN PAIN OR SUFFERING FROM
ANOTHER SYMPTOM, ALL THE OTHER DIMENSIONS OF
CARE ARE SECONDARY TO THAT. WHAT DOES SHE DO TO, LIKE,
EXHIBIT PAIN? HOW DOES SHE SHOW YOU
SHE’S IN PAIN? SHE JUST, I MEAN, SHE’LL CRY. SHE’LL START BITING HERSELF. SHE SEEMS AGITATED. SHE’S HAD SOME
INCREASED PAIN. I USED EXTRA MORPHINE. DID USE THE INHALED
MORPHINE, TOO, TO KIND OF RELAX
HER AIRWAY? YEAH. IT’S ABOUT IMPECCABLE
ASSESSMENT AND MANAGEMENT OF SYMPTOMS SO THAT PAIN AND
SUFFERING IS TREATED IN THE MOST UP-TO-DATE,
EVIDENCE-BASED WAY THAT WE HAVE AVAILABLE. I MEAN, DEFINITELY WE’RE
A PHONE CALL OR A VISIT AWAY. SO WE, YOU KNOW,
IF YOU CALL US, WE CAN TELL YOU WHAT TO DO
TO MANAGE HER SYMPTOMS, AND TALK YOU THROUGH IT
ON THE PHONE, AND COME OUT IF WE NEED TO. ANYTHING ELSE,
PAIN MANAGEMENT WISE, THAT WE DIDN’T TALK ABOUT
THAT COULD BE IMPORTANT FOR FAMILIES TO KNOW? IF YOU HAVE A CHILD
THAT’S REALLY SICK, THE BEST THING IS TO DO
THE PAIN MANAGEMENT, AND ALLOW FOR
THE MEDICATIONS BECAUSE THE KIDS GO
THROUGH ENOUGH. MORE THAN LIKELY, IF THEIR
LIVES ARE GOING TO BE SHORT, THEY NEED THAT MEDICATION TO
HELP THEM ENJOY THEMSELVES, AND ENJOY THEIR FAMILIES, INSTEAD OF CONSTANTLY
BEING, HURTING, SO I THINK IT’S IMPORTANT. [Vianett Perez speaking Spanish] WHEN A CHILD IS BORN INTO A FAMILY WITH A DISABILITY OR CHRONIC OR COMPLEX ILLNESS, IT DOESN’T JUST HAPPEN TO THE CHILD, AND IT DOESN’T JUST
HAPPEN TO THE PARENTS – IT ALSO HAPPENS
TO THE SIBLINGS, WHICH WE OFTEN CALL
THE INVISIBLE CHILD. AND THEY KIND OF GET LOST
IN THE SHUFFLE. MY ROLE IS TO TRADITIONALLY SUPPORT THE SIBLINGS, TO PREPARE THEM FOR WHAT’S TO COME IN THE FUTURE OF THEIR SIBLING’S CHRONIC ILLNESS. I WORRY THAT MY MOM
AND DAD ARE SAD. SOMETIMES I EVEN WORRY THAT
MOLLY WILL NEVER COME HOME. DO YOU EVER THINK THAT WHEN
KASSIE GOES TO THE HOSPITAL, THAT SOMETIMES SHE MIGHT NOT
COME BACK HOME? YEAH. YEAH. SO HOW ELSE IS KASSIE DIFFERENT FROM
JASON AND DYLAN? WHEN SHE IS SEVENTY
YEARS OLD. WHEN SHE IS
SEVENTY YEARS OLD, WHAT’S GOING TO HAPPEN WHEN SHE’S
SEVENTY YEARS OLD? SHE WILL JUST
STAY LIKE A GIRL. YOU THINK SHE’S GOING TO
ALWAYS STAY LIKE A GIRL? YEAH. [Vianett Perez speaking Spanish] I THINK THAT’S ALSO
A PART OF MY ROLE IS HELPING THEM FIND
A NEW NORMAL. FIRST YOU HAVE TO
ADDRESS WHAT WAS LOST. I DON’T LIKE THE FACT THAT
MOM AND DAD AREN’T RIGHT AT MY BECK AND CALL
LIKE THEY USED TO BE. I DON’T LIKE THE FACT THAT
NOW WE HAVE TO SPEND SO MUCH TIME AWAY GOING TO
HOSPITALS AND DOCTOR VISITS, BUT FINDING A NEW NORMAL
FOR THE SIBLINGS WOULD BE SOMETHING AS SIMPLE AS FINDING ACTIVITIES
FOR THEM TO DO, WAYS THAT THEY CAN
HELP FEEL A PART OF THAT CIRCUMSTANCE, FEEL A PART OF
THEIR SIBLING’S CARE. SHOW KASSIE. SHOW HER IN
HER WHEELCHAIR. THERE YOU GO. SEE? LOOK, YOU’RE HERE. I THINK SHE LIKES IT. SHE’S SMILING. YEP. OH, GOOD JOB. THE BOYS ARE PRETTY GOOD. THE BOYS UNDERSTAND. THEY’LL COME UP AND
CUDDLE NEXT TO HER IN BED AT NIGHT
IN HER ROOM. THEY LOVE THEIR SISTER. SINCE TYLER’S ORIGINAL DIAGNOSIS AND BRAIN SURGERY, HE HAS BEEN ADMITTED TO THE HOSPITAL DOZENS OF TIMES RELATED TO HIS BRAIN TUMOR AND A COMPLEX WEB OF INTERRELATED COMPLICATIONS. (Cara Beatty) WE ARE UNDER PALLIATIVE CARE
BECAUSE TYLER IS COMPLEX, AND I THINK THE HARD THING IS,
IT’S NOT ALWAYS WHAT IT IS. LIKE, TYLER KIND OF WRITES
HIS OWN BOOK AND I THINK THAT THAT’S A LOT OF TIMES HOW CHILDREN
OF PALLIATIVE CARE ARE. IT’S NOT BY THE BOOK. THEY’VE WRITTEN
THEIR OWN BOOK. HIS PROBLEM LIST WAS PROBABLY A PAGE LONG. HIS MEDICATION LIST WAS TWO PAGES LONG, IF NOT MORE. AND A LOT OF PROVIDERS WERE VERY AFRAID OF
TAKING CARE OF HIM. CHILDREN AND FAMILIES
ARE BOUNCING AMONG MANY SITES OF CARE. THEIR HOMECARE PROVIDERS ARE
COMING TO THEM IN THEIR HOMES, THEY GO TO THEIR PRIMARY CARE
PROVIDERS IN THEIR COMMUNITY. THEY GO TO TWELVE, THIRTEEN,
TWENTY SUBSPECIALISTS FOR EVERY LITTLE SYMPTOM OR
DISEASE ISSUE THEY HAVE. THEY ARE IN AND OUT
OF THE HOSPITAL, IN AND OUT OF
THE EMERGENCY ROOM, SO THAT’S WHAT
FRAGMENTATION IS, IS THAT KIND OF PIECEMEAL CARE THAT OCCURS IN ALL OF THOSE DIFFERENT SITES. WHEN THAT HAPPENS IT BECOMES THE RESPONSIBILITY OF
THE FAMILY TO BE THE COHESION, TO BE THE GLUE THAT
REMEMBERS EVERYTHING THAT HAS GONE ON
WITH THEIR CHILD, THAT CAN COMMUNICATE
WHAT HAPPENED FROM THIS VISIT TO THAT VISIT, TO THIS SUBSPECIALIST
TO THAT SUBSPECIALIST. SO FAMILIES VERY QUICKLY
TURN INTO BEING THEIR CHILD’S FULL-TIME
CASE MANAGER. THE PROCEDURE THAT PALLIATIVE CARE DOES IS CONVERSATION AND COMMUNICATION. AND REALLY, THE SYSTEM OF
PEDIATRIC PALLIATIVE CARE AND THE MEDICAL HOME MODEL
IS DESIGNED TO BRIDGE THOSE TRANSITION
POINTS OF ENTRY. IF YOU LOOK AT WHERE A CHILD
ENTERS A HEALTHCARE SYSTEM, HOW CAN WE COALESCE
THAT INFORMATION? SO IT’S BRIDGING,
IT’S COMMUNICATION, AND IT’S DOING THAT IN
A WAY THAT THE FAMILY DOESN’T FEEL RESPONSIBLE
FOR THE DETAILS. THEY HAVE ENOUGH TO
WORRY ABOUT. THEY FIGHT AS
HARD AS WE DO AND I JUST REALLY FELT,
AS SICK AS HE WAS, THEY NEVER GAVE UP ON TYLER. THEY, THEY SAW WHO HE WAS
AND WHO HE COULD BE AND WITH DIGNITY
AND RESPECT, THEY FOUGHT FOR HIM JUST AS MUCH AS
CHRIS AND I WOULD, AND THEY HELPED US GET TO
A POINT WHERE WE ARE TODAY. READY, CATCH IT. GOOD JOB! OOO! (Catherine Kelly-Langen)
HE HAS BEEN AMAZING. HE’S BEEN PROGRESSIVELY
IMPROVING THROUGH THERAPY. HE’S BEEN BACK AT SCHOOL INTO
A REGULAR CLASSROOM. TALKS… GOT YELLED AT AT SCHOOL
FOR TALKING TOO MUCH. I SAID THAT TO SOMEONE AND THEY SAID, I DIDN’T EVEN
KNOW HE TALKED, YOU KNOW. YES, HE TALKS TOO MUCH
APPARENTLY. AND YOU KNOW, GOING TO
CHURCH AND STANDING UP IN THE MIDDLE OF CHURCH
SAYING, AMEN! (Cara Beatty) I WHOLEHEARTEDLY BELIEVE THAT
WITHOUT THEM IN TYLER’S CARE OUR STORY WOULD BE
DETRIMENTALLY DIFFERENT. I JUST ALMOST,
WHEN I SEE DR. FRIEBERT, I ALWAYS JUST GIVE HER
A HUG BECAUSE… SHE LITERALLY SAVED
TYLER’S LIFE. HER AND THE WHOLE TEAM. LARRY HICKMAN AND HIS EX-WIFE KARI HAVE THREE DAUGHTERS, KAYLA, KRISTA, AND KENDRA; AND THREE SONS, GRANT, GARRETT, AND KENT. ALL THREE OF THE BOYS WERE DIAGNOSED WITH A RARE DISORDER CALLED SANFILIPPO SYNDROME. AT BIRTH THE CHILD APPEARS NORMAL, AND THEN SLOWLY ACQUIRES DEVELOPMENTAL DISABILITIES. AS THE DISEASE PROGRESSES, THE CHILD DEVELOPS MORE BEHAVIORAL PROBLEMS, INCLUDING HYPERACTIVITY, DESTRUCTIVE AND AGGRESSIVE BEHAVIOR, AND SLEEP DISTURBANCE, PRESENTING SIGNIFICANT CHALLENGES TO CAREGIVERS. IN THE FINAL PHASE OF THE DISEASE, THE CHILD BECOMES INCREASINGLY IMMOBILE AND UNRESPONSIVE, DEVELOPS SEIZURES, AND HAS DIFFICULTY SWALLOWING. THERE IS NO CURE AND CHILDREN WITH SANFILIPPO SYNDROME TYPICALLY DO NOT LIVE BEYOND THEIR TEENAGE YEARS. THE HICKMANS CARED FOR THESE THREE BOYS ON THEIR OWN UNTIL LARRY AND HIS WIFE KARI GOT DIVORCED SEVERAL YEARS AGO. MY WIFE AND I ARE NO LONGER MARRIED. I HOLD NO JUDGMENT ON THAT BECAUSE MY WIFE WAS
A WONDERFUL MOTHER, AND WHILE I WORKED
AT SCHOOL AS AN ADMINISTRATOR
IN EDUCATION, SHE CARED FOR
THE FAMILY AT HOME. BUT SHE HAD SEVENTEEN, SIXTEEN YEARS WITH
GRANT AT HOME, AND THEN I WOULD COME
HOME AT NIGHT AND, I’LL BE HONEST, THE TIME
I WAS AT HOME WAS ROUGH, SO I DON’T KNOW HOW SHE DID
TWENTY-FOUR HOURS. AND WE LACKED SERVICES,
WE LACKED CARE AT THAT TIME, SO SHE WAS DOING
MOST OF IT HERSELF. THE PALLIATIVE CARE TEAM BECAME INVOLVED AT A TIME WHEN LARRY WAS STRUGGLING TO HANDLE THE PRESSURES OF WORK AND CARING FOR HIS CHILDREN ON HIS OWN. I WORK A LOT WITH BUILDING A RELATIONSHIP WITH A CHILD AND FAMILY AND ASSESSING WHAT THEY NEED, AND COMING UP KIND OF WITH A PLAN, ESPECIALLY A NEW PATIENT, ON HOW WE CAN HELP. THE PALLIATIVE CARE TEAM AT AKRON CHILDREN’S HOSPITAL WILL DO ALMOST ANYTHING TO MAKE THE LIVES OF A PATIENT AND FAMILY EASIER. IN THE CASE OF THE HICKMAN FAMILY THE TEAM PROVIDED SUBSPECIALTY MEDICAL EXPERTISE, ASSUMED THE ROLE OF CARE COORDINATION, AND HELPED THE HICKMANS GAIN ACCESS TO PHYSICAL THERAPY AND THE APPROPRIATE ADAPTIVE EQUIPMENT FOR THE THREE BOYS. MY PASSION IS TO HELP PEOPLE BREAK THROUGH THE SYSTEM AND BARRIERS AND TO BE ABLE TO LIVE LIFE
WITHOUT ALL THESE OTHER CUMBERSOME THINGS
THAT YOU DIDN’T SIGN UP FOR. THE TEAM ALSO HELPED THE HICKMANS GAIN ACCESS TO LEGAL SERVICES TO PETITION THE STATE FOR ADDITIONAL NURSING HOURS, WHICH THEY DESPERATELY NEEDED. BETWEEN DENISE AND
THE PALLIATIVE CARE TEAM THEY WERE ABLE TO
WORK WITH ME TO SAY THE RIGHT THINGS AND
WRITE THE RIGHT THINGS IN ORDER TO GET ADDITIONAL
STATE SERVICES FOR THE BOYS. AND THAT TOOK THE REALM OF
AN APPEAL PROCESS AND WE TESTIFIED IN THE APPEAL
PROCESS AS A TEAM, ME AND DR. FRIEBERT, AND EVENTUALLY
THE CASE WAS WON. WE’LL GET IN THERE
IN THE TRENCHES WITH THE FAMILIES. ♪ I THINK IT WAS JUST
THE ASSURANCE OF KNOWING THAT HERSELF OR SOMEONE ELSE WAS
ALWAYS JUST A PHONE CALL AWAY. WE’D BE AT THE HOUSE AND HAVE
A CONCERN AND WE’D CALL. WE MIGHT NEED TO HAVE
HER MEDS CHANGED. THEY’D BE ABLE TO CALL
IN A PRESCRIPTION. THEY’D COME OUT AND THEY DO
CHECKUPS, AND CHECK INS. ENDLESS PHONE CALLS
TO THEM ALL THE TIME FOR PROBABLY TWO YEARS. [speaking Spanish] MORGAN ALSO HAD JUST A HOST OF HEALTHCARE
PROFESSIONALS. SHE HAD TO HAVE
RESPIRATORY THERAPISTS. SHE HAD TO SEE
THE PULMONOLOGIST. SHE HAD TO SEE
THE NEUROLOGIST, PHYSICAL THERAPIST,
OCCUPATIONAL THERAPIST. SHE DID AQUATIC THERAPY SO WE WERE WORKING WITH
A LOT OF DIFFERENT PEOPLE WHERE PALLIATIVE CARE
WAS OUR HOME BASE AND THAT’S HOW WE CONNECTED EVERYBODY. EVERYONE WAS ABLE TO GET THE SAME INFORMATION BECAUSE PALLIATIVE CARE WAS DOING THAT FOR US. BECAUSE ANY ONE SPECIALIST MAY BE PHENOMENAL BUT THEY ARE REALLY PAYING ATTENTION TO THE HEART. THEY ARE REALLY PAYING ATTENTION TO THE LUNGS, OR THE PAIN, AND THEY LITERALLY ARE
NOT LOOKING AT THE WHOLE PERSON OR
THE WHOLE SYSTEM. THEY REALLY COULD LOOK OUTSIDE OF THE BOX AND SEE HIM AS A PERSON AND NOT JUST AS A DIAGNOSIS. (Sarah Friebert, MD)
THEY ARE HAVING CONVERSATIONS WITH THEIR SPIRITUAL
CARE PROVIDERS. THE CHILD LIFE SPECIALIST
IS ELICITING SOME OF WHAT THE CHILD’S VISION IS
OF HIS OR HER LIFE. THE HOME CARE NURSE IS
HEARING OR SEEING THINGS. THE SOCIAL WORKER IS
PICKING UP ON THINGS, AND WE’RE PUTTING
THAT ALL INTO THAT TRANSDISCIPLINARY
SOUP IN A WAY THAT GETS MISSED WHEN
THE DECISIONS ARE MADE ONLY BASED ON WHAT HAPPENS IN
A TEN MINUTE OFFICE VISIT OR AN ACUTE-CARE STAY
IN THE PICU WHEN THE CHILD IS AT
HER WORST, AS OPPOSED TO CALM
DECISION-MAKING OR CONVERSATION ON AN ONGOING
BASIS OVER A LONG TERM WHERE YOU ARE REALLY ASSESSING
THE WHOLE NEEDS OF THE FAMILY. AND I THINK THAT’S WHAT
PALLIATIVE CARE BRINGS. PALLIATIVE CARE ENCOMPASSES ALL OF THE DOMAINS OF CARE THAT RELIEVE SUFFERING FOR THE WHOLE PERSON AND FAMILY, AND AN INTEGRAL PART OF THE ILLNESS JOURNEY CENTERS AROUND THE SPIRITUAL DOMAIN THROUGH WHICH FAMILIES FIND MEANING, CREATE LEGACY, AND DEVELOP A RELATIONSHIP WITH THE TRANSCENDENT. SERVING AS CHAPLAIN ON THE PEDIATRIC PALLIATIVE CARE TEAM IS A WONDERFUL PRIVILEGE BECAUSE I GET TO SIT WITH
PATIENTS AND FAMILIES AND I GET TO ENGAGE THEM
IN TALKING ABOUT WHAT BRINGS THEIR LIFE
MEANING AND PURPOSE. KAREN’S BEEN VERY SWEET. I’VE HAD HER IN THERE
A COUPLE OF TIMES WHEN KASSIE’S BEEN VERY SICK
AND PRAYING WITH HER HAS MADE ME FEEL REALLY,
UHM, FULFILLED. I ALWAYS BELIEVED IN GOD
BEFORE BUT WITH KASSIE, MY FAITH HAS DEFINITELY
GOTTEN A LOT STRONGER. I TALK TO GOD A LOT AND
I ALWAYS LIKE TO HAVE THAT SECOND PERSON THERE, YOU KNOW,
JUST MAYBE TALK TO, LIKE, WHAT’S HEAVEN LIKE, OR WHAT WOULD HAPPEN
IF SHE WOULD PASS? WHAT WOULD THINGS
BE LIKE FOR HER? YOU KNOW, JUST THE LITTLE,
MAYBE SOMETHING THAT WOULD BE STUPID TO SOMEBODY
ELSE BUT IS VERY BIG TO ME. GRANT HICKMAN, THE OLDEST OF THE THREE BOYS, DIED RECENTLY AT THE AGE OF NINETEEN. THE PALLIATIVE CARE TEAM HELPED THE HICKMANS WITH DIFFICULT DECISIONS AT THE END OF LIFE. MY OLDEST SON
PASSED IN DECEMBER AND WE HAD MIXED VIEWS WITHIN THE FAMILY AS FAR AS WHAT WE SHOULD DO PRIOR TO THAT, THE COUPLE WEEKS LEADING UP TO HIS DEATH, AND WE HAD A LOT OF ETHICAL ISSUES THAT WE WERE STRUGGLING WITH. BOTH DENISE THE SOCIAL WORKER
AND DR. FRIEBERT CAME TO OUR HOUSE
SEVERAL TIMES AND I REMEMBER THEM
COMING IN JEANS AND I REMEMBER THEM SITTING
DOWN IN OUR LIVING ROOM AND I THINK THE STYLE OF
CONCERN AND LEADERSHIP THAT THEY GAVE US WAS
SO IMPORTANT BECAUSE WE DIDN’T
KNOW WHAT TO DO. WE HAD NEVER WENT THROUGH
THE DEATH AND DYING PROCESS, UHM, AND WE WANTED TO
HOLD ON BUT WE DIDN’T, WE DIDN’T KNOW WHAT
WAS BEST FOR GRANT. AND THEY,
WITHOUT ANY JUDGMENT OR WITHOUT ANY REAL
DIRECT DIRECTNESS, THEY WALKED US THROUGH
ALL THE CHOICES AND THEY ALLOWED US TO MAKE THOSE
CHOICES WITH DIGNITY FOR GRANT AND TO THIS DAY, I JUST APPRECIATE THE WAY
THEY WORKED WITH US. (Sarah Friebert, MD) OUR CHALLENGE AS
A PALLIATIVE CARE TEAM WAS FIRST AND FOREMOST TO
FIGURE OUT WHAT WAS IN GRANT’S BEST INTEREST
AND SUPPORT THAT, AND SECONDLY, TO FIND
A WAY THAT ALL SEVEN OF THESE PEOPLE WOULD BE
ABLE TO CONTINUE TO LIVE AFTER GRANT DIED, AND FEEL
OKAY ABOUT WHAT HAPPENED. IF THIS ISN’T HANDLED WELL YOU’VE GOT SEVEN LIVES THAT
WILL BE FOREVER CHANGED. NOW, THEY’RE GOING TO BE
FOREVER CHANGED ANYWAY, NO QUESTION, BUT IF YOU’RE LEFT
WITH RESIDUAL GUILT OR ANGER OR CONFUSION OR WHATEVER, IT JUST MAKES IT THEN
THAT MANY TIMES WORSE. SO OUR CHARGE,
IF YOU WILL, WAS TO TRY TO
MEDIATE A SOLUTION THAT PRESERVED
GRANT’S DIGNITY AND QUALITY OF LIFE TO
THE BEST OF OUR ABILITY AND REALLY WAS IN
HIS BEST INTEREST, BUT ALSO ALLOWED EACH OF
THOSE FAMILY MEMBERS TO GET THERE IN THE WAY
THAT THEY COULD. THEY WERE ABLE TO ALMOST
NEGOTIATE THE FAMILY DECISIONS INTO A GROUP CONSENSUS THAT
EVERYBODY COULD LIVE WITH. WE STILL, SIX MONTHS LATER,
ARE VERY COMFORTABLE WITH THE WAY WE WERE COUNSELED
AND THE WAY IT ENDED UP. WHEN SHAUNIE HOPFE GAVE BIRTH TO HER SON NOAH SHE WAS A SINGLE MOTHER OF TWO DAUGHTERS NAMED JOI AND TRINIDI AND A SON NAMED NIKO. NOAH WAS BORN WITH A RARE FORM OF TRISOMY 13, A GENETIC DISORDER THAT CAUSED HIM TO HAVE NUMEROUS MEDICAL PROBLEMS AND PHYSICAL DEFORMITIES. HE HAD APNEIC EVENTS WHERE HE WOULD STOP BREATHING AND TURN BLUE AND OFTEN NEEDED RESUSCITATION. HE DIED IN THE HOSPITAL AT SIX MONTHS OF AGE AFTER ONE OF THESE EPISODES. THE TWO TIMES WHEN HE STOPPED BREATHING I CRIED AND I TOLD HIM DON’T LEAVE ME AND HE WOULD START TO BREATHE AGAIN BUT SLOWER, AND THEY TOLD ME THAT
HE’S JUST WAITING FOR ME TO LET HIM GO, SO THAT THIRD TIME
I DIDN’T ASK HIM AND I JUST CRIED
AND HOLD HIM AND WAS ROCKING HIM AND
HE DIDN’T COME BACK ON. AND I FELT HIM STOP
BREATHING FIRST, AND THEN I FELT
HIS HEART STOP. AND THEN THE DOCTOR SAID
THAT HE WAS GONE. AND AT THAT POINT LIKE, NOBODY COULD GIVE ME
ANYTHING UNLESS IT WAS
GIVING ME NOAH BACK. YOU KNOW, BUT THEY MADE SURE
THAT DURING HIS LAST MOMENTS I HAD EVERYTHING I NEEDED
TO BE COMFORTABLE AND THAT HE HAD
EVERYTHING HE NEEDED. IT’S A HUGE PRIVILEGE TO BE ABLE TO, UHM, TO BE PART OF ANY CHILD’S END-OF-LIFE
THAT I’M WITNESS TO. IT IS AN AMAZINGLY EMOTIONAL
AND SPIRITUAL AND PASSIONATE MOMENT THAT
SOMETIMES IS AWFUL BUT IT’S HAPPENING, WE CAN’T DO ANYTHING
ABOUT IT HAPPENING SO WE MAY AS WELL BE THERE AND RECOGNIZE THE PRIVILEGE
FOR WHAT IT IS. IT’S A PASSAGE. I LOOKED IN MORGAN’S EYES… AND I SAID, THANK YOU, MORGAN, AND I RUBBED HER HAND
ON MY FACE, AND I KISSED HER. AND I SAID, I LOVE YOU SO MUCH,
YOU’RE SO BEAUTIFUL. AND YOU TEACH MOMMY SO MUCH,
AND I THANK YOU. YOU ARE THE BEST THING
IN THE WHOLE WORLD. AND I JUST KEPT SAYING,
I LOVE YOU SO MUCH. IT WAS A WONDERFUL EXPERIENCE
OF THE WHOLE FAMILY BEING TOGETHER AND
WATCHING HIM DIE PEACEFULLY, AND PALLIATIVE CARE
ALLOWING THE WHOLE PROCESS TO BE DONE WITH GREAT DIGNITY, ALLOWING US TO ALL
EXPERIENCE DEATH IN A WONDERFUL WAY. I REMEMBER, WE’RE VERY,
UHM, SPIRITUAL, AND IN HIS LAST DAYS, YOU KNOW,
WE SANG AND WE WORSHIPPED AND WE PRAISED, AND WE WATCHED HIM
GO QUIETLY. AND I DON’T BELIEVE
HE HAD ANY PAIN. I JUST BELIEVE HE JUST
WENT WITH PEACE. THE DEATH OF A CHILD DOES NOT END THE FAMILY’S RELATIONSHIP WITH PALLIATIVE CARE. THEY HAVE ONLY COMPLETED PART OF THE JOURNEY, AND AS THEY GO THROUGH THEIR GRIEVING PROCESS, BEREAVEMENT SPECIALISTS ARE AVAILABLE TO COUNSEL THE SURVIVING LOVED ONES THROUGH ONE-ON-ONE INTERACTION AND VARIOUS PROGRAMS ORGANIZED FOR INDIVIDUALS WHO HAVE EXPERIENCED A LOSS. ONE SUCH EXAMPLE IS THE GOOD MORNING PROGRAM, A GRIEF GROUP FOR CHILDREN AND TEENAGERS WHO ARE COPING WITH THE LOSS OF A LOVED ONE, BE IT A PARENT, GRANDPARENT, SIBLING OR ANYONE ELSE WHO PLAYED A SPECIAL ROLE IN THEIR LIFE. WELCOME TO SAND TRAY PLAY. TONIGHT I’M GOING TO ASK YOU TO BUILD YOUR WORLD. AND WHEN YOU’RE READY TAKE YOUR HEART-SHAPED BOX AND NOTICE THE MINIATURES
ALL AROUND THE ROOM. AND YOUR HEART’S GOING TO
RESONATE TO SOME OF THOSE MINIATURES, EITHER
POSITIVELY OR NEGATIVELY, AND THOSE ARE THE ONES
YOU WILL PUT IN YOUR BOX. LET YOUR HEART CHOOSE
THE MINIATURES THAT YOU WILL USE TO
BUILD YOUR WORLD. AND SINCE WE’RE MISSING SOMEONE
SPECIAL IN OUR LIVES, I’M GOING TO ASK THAT AS YOU
BUILD YOUR WORLD TONIGHT, YOU INCLUDE YOUR SPECIAL
PERSON IN YOUR WORLD, AND JUST LET
THE WORLD EMERGE FROM YOUR HEART
WITHOUT THINKING. (girl)
THIS IS MY BIG BROTHER. THIS IS HIS FAVORITE ANIMAL. (Carol Stanley)
THAT’S HIS FAVORITE ANIMAL. (girl)YEAH, AND I PUT THE CLOWN
BECAUSE HE WAS A BIG JOKESTER. HE ALWAYS PULLED PRANKS
AND CRACKED JOKES. THIS REPRESENTS THE PAIN THAT
I FELT WHEN HE PASSED AWAY. I REMEMBER THE TIME BECAUSE THERE’S NOT
A LOT OF TIME WHEN SOMEBODY’S DYING, SO I PUT THAT THERE. AND I PUT THE BLACK HEART
BECAUSE THAT’S HOW MY HEART FEELS. YOUR HEART FEELS BLACK. UH-HMM. WE KNOW IT DOESN’T END JUST WITH THE DEATH OF THE CHILD, IT’S GOING TO BE A FABRIC OF THEIR LIFE FOR THE REST OF THEIR LIVES, SO WE PARTICULARLY TRY TO
FOCUS ON THAT FIRST YEAR, YEAR AND A HALF AFTER THEY DIE TO KEEP IN CLOSE
CONTACT WITH THEM. PHONE CALLS, E-MAILS, DIFFERENT PROGRAMS THAT
WE OFFER ARE AVAILABLE. THEY ASKED ME, YOU KNOW, HOW IS IT GOING, YOU KNOW, HOW AM I DEALING WITH IT? AND I EXPRESSED TO THEM
THAT THE KIDS WAS ONE OF MY MAIN CONCERNS AND THEY JUMPED RIGHT IN. SAID, THIS IS THE PROGRAMS
WE HAVE, YOU KNOW, WE CAN SIGN THEM UP. THAT WAS A VERY GOOD THING,
ESPECIALLY, AT SCHOOL, THE KIDS BECAME, HEY, THAT’S THE GIRL WITH
THE BROTHER THAT DIED. BUT IN THIS PROGRAM
THEY HAD OTHER PEOPLE, OTHER LITTLE PEOPLE THAT
WAS DEALING WITH THE SAME THINGS THEY WAS, SO THEN THEY FELT LIKE
THEY’RE NOT ALONE. THEY HAD THE KIDS
DRAW PICTURES TO EXPRESS THEIR EMOTIONS. A LOT OF TIMES LITTLE KIDS,
THEY CAN’T, THEY DON’T KNOW
WHAT WORDS TO USE. AND WHAT WE FIND IS THAT PEOPLE
THAT CAN EXPRESS THESE THINGS AND FIND HEALTHY WAYS TO
EXPRESS THESE FEELINGS AND REACTIONS ARE GOING TO BE MORE
HEALTHY OVER THE LONG RUN. (Shaunie Hopfe)
NIKO, HE’S STILL, HE HAS DREAMS ABOUT NOAH. UHM, ONE NIGHT
HE WAS LAUGHING BUT I THOUGHT HE WAS CRYING, LIKE UNCONTROLLABLY
CRYING, LIKE SOBBING, BUT THEN I SAID, NIKO, NIKO. I SHOOK HIM AND WOKE HIM UP
AND I NOTICED HE WAS LAUGHING, AND HE SAID, MOMMY, STOP,
I’M PLAYING WITH NOAH. AND THAT REALLY SHOCKED ME. THAT REALLY SHOCKED ME
BECAUSE THAT WAS NOT AT ALL WHAT I EXPECTED, BUT IT’S STILL COMFORTING,
YOU KNOW, AND TO KNOW THAT EVEN THOUGH NOAH’S PASSED, NIKO IS STILL HAVING
A RELATIONSHIP WITH HIM. I THINK WHEN YOU HAVE
A FAMILY THAT’S GRIEVING YOU WANT TO BE AS OPEN AS
POSSIBLE TO REALIZING THAT THERE’S GOING TO BE
REACTIONS OF ALL TYPES AND YOU DON’T WANT TO
HAVE IN YOUR MIND ANY KIND OF PRECONCEIVED
NOTION OF WHAT IT SHOULD LOOK LIKE, BECAUSE IT’S NOT
GOING TO LOOK LIKE THAT. IT’S GOING TO BE UNIQUE
FOR THAT FAMILY. PEOPLE WHO ARE EXPERIENCED
WITH GRIEF, THEY KIND OF, THEY HAVE SOMETHING DIFFERENT
TO BRING THAN PEOPLE WHO LOVE YOU, BECAUSE
PEOPLE WHO LOVE YOU ALSO DON’T WANT TO HURT YOU. I THINK BEREAVEMENT SPECIALISTS
AREN’T AFRAID OF GRIEF. THEY DON’T TIPTOE AROUND. WHEN THEY ASK YOU
HOW YOU’RE DOING, THEY MEAN HOW ARE YOU IN
THE GRIEVING PROCESS? AND THEY ASK THE RIGHT
POINTED QUESTIONS. I’M ALWAYS FREE TO REMEMBER
MORGAN AND FREE TO TALK ABOUT HER AND PART OF MY,
MY GRIEVING PROCESS IS, WHEN PEOPLE ASK HOW
MANY KIDS I HAVE, AND I ALWAYS SAY,
WELL, I HAVE TWO, AND I MAKE SURE TO SAY
BUT MORGAN DIED AND PEOPLE ARE ALWAYS AFRAID OR THEY FEEL BAD THAT
THEY ASKED ME THAT, BUT I LOVE IT BECAUSE
IT’S LIKE I STILL GET TO HAVE HER WITH ME. IT’S JUST A WAY OF
REMEMBERING HER, TO TELL PEOPLE HER STORY. IN PALLIATIVE CARE AS THE AMERICAN ACADEMY
OF PEDIATRICS SAYS, WE FOCUS ON ADDING LIFE
TO THE CHILD’S YEARS, NOT JUST ADDING YEARS
TO THE CHILD’S LIFE. YOU KNOW, THINGS CAN
ALWAYS HAPPEN AND THAT IS ONE OF THE THINGS
THAT DR. FRIEBERT AND THE TEAM REALLY FOCUS ON, LIKE, YOU COULD GO OUT AND GET
KILLED IN A CRAZY ACCIDENT BUT WOULD YOU NOT LIVE LIFE BECAUSE
YOU “MIGHT”? AND THAT’S REALLY
HELPED US WHEN WE WERE STRUGGLING THROUGH
THE REALLY HARD TIMES TO REALLY EMBRACE
WHO TYLER IS AND WHERE WE ARE NOW. (Shaunie Hopfe) I DIDN’T WANT WHATEVER TIME
NOAH HAD TO BE FILLED WITH SADNESS. I JUST WANTED HIM TO
HAVE A HAPPY LIFE HOWEVER LONG IT
WAS GOING TO BE. I MEAN, I REALLY VALUED
THE TIME WITH NOAH. PALLIATIVE CARE TOOK AWAY
A LOT OF THE STRESS OUT OF THE SITUATION AND DAY ONE,
THAT’S WHAT THEY TOLD ME, WE DON’T WANT YOU TO
STRESS ABOUT IT. WE JUST WANT YOU TO ENJOY
THE TIME WITH HIM. THEY ARE NOT HERE
BY ACCIDENT. THEY GOT HERE FOR A REASON. AND THEY ARE HERE
TO DO SOMETHING, AND IT IS SOMETIMES
ACCOMPLISHED IN MINUTES AND SOMETIMES
ACCOMPLISHED IN DAYS. BUT THOSE DAYS ARE AS
SACRED TO THOSE PARENTS AS THE YEARS ARE TO
ANY OTHER PARENT. I BELIEVE THAT THINGS
HAPPEN FOR A REASON. WE DON’T KNOW WHY, BUT I THINK SHE HIT IT
ON THE MARK WHEN SHE SAID
HE’S TOUCHING SO MANY LIVES. (Cara Beatty)
HE HAS TAUGHT ME SO MUCH, AND AS A PARENT, IT REALLY
SPEAKS TO YOUR HEART WHEN PEOPLE COME UP
TO YOU AND SAY, YOUR SON HAS TAUGHT ME
SO MUCH. I’M SO GRATEFUL THAT
I GOT TO MEET HIM. MY LIFE HAS BEEN ENRICHED BECAUSE SHE GIVES ME
UNCONDITIONAL LOVE. SHE IS ONE OF
THE BEST CUDDLERS. SHE, SHE LOVES YOU,
NO MATTER WHAT. (Larry Hickman) THE THINGS THAT YOU WOULD
STRIVE FOR NORMALLY IN MATERIALISM OR TRYING
TO GAIN POWER OR POSITION OR WHATEVER, JUST REALLY
KIND OF GO AWAY. THEY’RE NOT THAT
SIGNIFICANT IN LIFE, AND I THINK THAT IT’S MORE ABOUT LIVING LIFE TO ITS FULLEST AND LIVING LIFE FOR OTHER PEOPLE AND CHERISHING THE MOMENT
BECAUSE THE MOMENT WON’T LAST. WELL, I’VE LEARNED THAT,
DON’T LET LIFE GET YOU DOWN, AND LIVE LIFE TO THE FULLEST. [giggling] [Vianett Perez speaking Spanish] [Salvador Perez] [speaking Spanish] [Vianett Perez speaking Spanish] BECAUSE OF WHAT WE’VE
GONE THROUGH WITH MORGAN OUR PERSPECTIVE ON
LIFE HAS CHANGED. (DeNica Bishop) GOING THROUGH THIS PROCESS
WITH MORGAN, IT WAS LIKE, WATER STARTED
TO TASTE BETTER, AIR STARTED TO
SMELL BETTER. IT WAS LIKE A BRAND-NEW
CLARITY ON LIFE AND THINGS THAT WERE, THEY USED TO
SEEM SO BIG TO ME WERE NOW SMALL
IN COMPARISON. YOU CAN’T GET THAT
FROM ANYWHERE ELSE. YOU CAN’T READ IT
IN A BOOK. YOU CAN’T DREAM IT UP. YOU CAN ONLY GO THROUGH IT. THERE’S SO MUCH THAT YOU GAIN. THERE’S A FIGHT IN YOUR SPIRIT
THAT YOU GAIN THAT SAYS, NO MATTER WHAT WE FACE, WE HAVE A RESOLVE THAT SAYS
WE’RE GOING TO GET THROUGH IT. AND IT WOULDN’T HAVE BEEN THERE
IF MORGAN HADN’T, HADN’T SHOWN US. ♪ ♪ ♪ ♪

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