NTANN Been there Haven't Done That Emotional Empathy...Supporting NICU Parents

“Been there haven’t done that”:
Life and Death Through the Eyes
of NICU Families…Building
Emotional Empathy in Neonatal
Nurses
Terri L. Major-Kincade MD MPH
Pediatrix Medical Group North Dallas
Chair, Neonatal Palliative Care Team
THR Plano
Neonatologist, Angel Unaware
Neonatal Hospice
NTANN Meeting
THR Dallas
4-19-16

Disclosures
• Dr. Major-Kincade speaks fast normally and is not on
medication
• Dr. Major-Kincade may become emotional during a
portion of this talk please feel free to share Kleenex
• Dr. Major-Kincade loves her job and considers it a
privilege and a blessing to care for babies and their
families
• Dr. Major-Kincade has two healthy children who are the
products of normal pregnancies
• Dr. Major-Kincade has experienced no pregnancy losses

Objectives
• To highlight key themes for NICU families and
families of infants with life threatening chronic
illness through parent narratives
• To identify biases of health care providers when
counseling NICU families
• To summarize parents wishes for difficult
decision making
• To provide an interactive exercise to facilitate
emotional empathy with families

Audience Poll: What is your NICU History
• 1. Are you a parent?
2. Have you experienced neonatal/pregnancy
loss?
• 3. Have you personally cared for a child with
special needs?
• 4. Have you cared for a patient who died in the
NICU?
• 5. Have you seen NICU graduates who did better
or worse than you believed they would?

Parent Narratives
• Current Problems Pediatric and Adolescent Health Care April
2011
• 12 Parent Narrative from parents of Children with Life-
Threatening Chronic Illness and Lethal Anomalies
• Values
• Judgements
• Choices
• Regrets

Key Themes for Parents
•Perspective
•Cherishing the moment
•Transitioning to a new role
•What really matters/Honoring
Choices
•Fear (Holding your breath)
• Regrets/Guilt

WhoWould WantA ChildLikeThat?
• “A person who is connected”
• “A person who wants to learn about love”
• “A person who wants to know about self-sacrifice”
• “A person who wants to face hell and heaven right
here, right now”
• “Someone strong who wants to learn about
weakness”
• “Someone weak who wants to learn about
strength”
• “A person who wants to change the whole world”
• “A person who wants to change one child’s world”

“Who would want a child like that?”
ClaireRoy,BAMA
• A parent wants a child like that!
• And they want EVERY chance to do their job well
• They deserve EVERY support that it takes to
bring that child's life to fruition, that child’s gifts
to the world into which “that child” chose to
enter
• WHO ARE YOU TO QUESTION THE LIFE OF A
CHILD LIKE THAT????

“Waiting with Gabriel”
AmyKuelbeck
• Getting the News
• Being Punched in the
stomach
• Being Hit by a truck
• World is crashing in
• “Falling backward, as
though the tiled
concrete floor, the
clay underground, all
the subterranean
layers of rock were
simply and
soundlessly parting
to let me through to
some other
dimension”

Waiting with Gabriel
AmyKuelbeck
• What followed was an
extraordinary journey of
grief, joy, and love as we
waited with Gabriel,
simultaneously preparing
for our son's birth and for
his death.
• Despite some wrenchingly
aggressive surgical options
no one could give our son a
good heart.
• “So we sat out to give him
a good life.”

AmyKuelbeck
• People are astonished—
and perhaps horrified—
that I walked around
pregnant for 3 ½ mos
carrying a baby I knew
would die.
• It would have cut Gabriel’s
natural life short for no
good reason.
• It would not have been a
shortcut through grief
• Some must have thought
we should get on with our
lives..but for that time
being with GABRIEL was
our life

AmyKuelbeck
• Yes Gabriel was going
FIRST live….
• Our overriding wish was
that our son Gabriel’s
birth and short life be
filled only with comfort
and love…and it was.

“ShaleBug”
TanisMiller
• Before my son passed away, I always
said that his birthday was the scariest
day of my life.
• “Why isn’t it crying?” I screeched not
even knowing if it was a boy or a girl
or a monkey I just gave birth to.
• “What’s going on? What’s wrong?” I
shrieked?” My voice rising to near
hysteria.
• That’s when I caught the first
glimpse of my baby, my boy. His skin
was purple and his feet were
deformed, pointing in the wrong
direction as though they were on
backwards.
• At that moment in time, that exact
moment, life as I knew it stopped.

“ShaleBug”
TanisMiller
• “He’s missing a large
portion of his brain”
• “He has kidney
problems”
• “He won’t make it”
• “He may make it”
• “It doesn’t look good”
• “He won’t be normal”
• “He has a palsy of
some sort”
• Here’s a hint:
• “When theorizing
what is the matter
with a newborn while
his mother is in the
room waiting to push
out her placenta, you
should speak quietly.
• We mom's are
listening, panicking
and wishing we never
watched episodes of
House!”

“ShaleBug”
TanisMiller
• “I watched as Lyle
caressed my son gently
and whispered unknown
words to him” It felt like
a balm to my worried
soul to watch this man
sweep in and effortlessly
take charge.”
• Within 10 minutes he
told us everything he
believed our son would
never accomplish.
• I wanted to gut punch
him the way he had just
done to me.

“ShaleBug”
TanisMiller
• “After sizing me up, Lyle sat
me down and stopped telling
me what Shale couldn’t do
and started telling me what
he would do.
• He told me Shale would be
the best thing that ever
happened to me
• He was right
• He offered hope where we
saw none and told us Shale
would be a blessing tothe
world and he was right.
• He told us to listen to our son.
If we loved Shale enough,
Shale would be enough. And
he was right.

“ShaleBug”
TanisMiller
• “I look back now and it doesn’t feel scary any more. Not
much does after watching your child die to be honest.”
• January 4 is not just my beautiful boys birthday
• It’s the day his father and I became the people we are
today
• It’s the day I realized that doctors are human and
hospitals don’t have to be scary
• It was the day we became parents to a handicapped
child and learned how to love wholly and
unconditionally.
• It’s the day we became the forever parents to the
bright blue eye boy we called Shale

“Underweight on My Chest”
JeanSetrakianMD
• My son was born at 28wks
though he threatened to be
born at 25 wks
• I considered it my duty as a
physician to demedicalize
the situation
• Nurses welcomed us into
the unit daily with
laboratory reports even
though we told them that
although we were
physicians we had no desire
to know lab results..we
only wanted to know if he
was okay

“Underweighton My Chest”
JeanSetrakianMD
• ..And then there was the Kangaroo..those moments I dreaded the most
• With my shirt unbuttoned I had to hold the position until my son appeared
all connected to IV’s, electrodes, etc. on my chest..whose every hair I felt
bristle up as I forced myself out of a sense of duty to press the misshapen
skull to my chest
• A gesture I felt was sexual and awkward against my male body
• And then the apneas would start..maybe he was uncomfortable too
• I would leave the unit with a feeling of loss, a feeling of foreboding, a
shaking inside and out, of one shaken and utterly threatened in his
deepest self

“Suddenly I was a Them”
FeliciaCohnPhD
• Suddenly I was a “them”
• The moment that should have been the most
joyous in my life became the most tragic
• In the shift from health care professional to
mother of a critically ill newborn, I learned
things that redefined my life and my
professional identity

FeliciaCohnPhD
• Never before had the “us vs. them” divide been
so clear
• I had worked in the “us "role for year and it wsa
comfortable. Health care professionals were
powerful, authoritative and knowledgeable
• Families, I knew were supposed to be vulnerable,
dependent, and fragile.
• I was a “them” I tried to draw on all that I had
learned and taught in my role as a bioethicist.
• My experience provided little solace.

FeliciaCohnPhD
• From this experience I have come to
understand the world of the patient and the
limits of empathy
• What doe it really mean
• Nature of questions posed to families
• Informed consent?
• Allocation of health resources?

FeliciaCohnPhD
• As medical professionals we pose questions to parents that
now seem incomprehensibly unfair
• As I was struggling to deal with the incredible stresses and
uncertainties of my baby's illness..I could not also deal with
decisions about whether to let her die.
• These questions weren’t just hard..they were impossible
• Was I really being asked to make decision when the medical
recommendations seemed so clear?
• In my stressed exhausted, post partum state, I do not know
that I could have claimed to be a reasonable person

“Pepperoni Pizza and Sex”
AnneJanvier
• “Are you telling me
that my son is dying? “
said Gabriel’s mother.
She was 19 and had
delivered him at home
at 27 wks
• She and her husband
never left his bedside
• On DOL 3 He sustained
a pulmonary
hemorrhage and a
Grade 4 bleed
• Primary Nurse:
“Mom is in denial, she
treats him like a doll. She
keeps saying he is
soooooooooooooo
cuuuute!”

AnneJanvier
• Physician/NNP: Tries
to explain statistics
about Grade IV bleeds
Parents:
• Can we love him ??
• Will he love us?sinc
• Will he have a
capacity for joy?Will
• Will he be able to
have sex
• Will he be able to
make pizza?

AnneJanvier
• Gabriel’s young parents were teaching me
something.
• We had seriously misjudged this couple.
• Faced with the same challenges I would have
problem take Gabriel with his broken cortex off
his HFOV so he could die peacefully
• I would have told myself I was doing it for him, in
his best interest, that I was not selfish, that I
loved him enough to say goodbye.

AnneJanvier
ll Gabriel’s parents
wantedFParents:
• For their child to
love them
be able to enjoy
sex
be able to put
pepperoni on a
pizza
• Health care providers:
• Good and rewarding
career
• Healthy family
• High IQ
• An intelligent husband
with a good sense of
humor
• Comfortable home for
my three healthy kids
• Sports, yoga, good food,
• Traveling, many books,
writing papers,
restaurants and theater

“Being There”
MarthaMontello,PhD
• Will was born at 23wks and 1day. His twin Sam
was born 3 days later. Sam died a day and a half
after he was born.
• As my daughter absorbed what had
happened..she began to envision her life
now..wondering how she would raise a disabled
child
• I promised as any mother would that I would be
there

“Being There”
MarthaMontello,PhD
• Every trip from my midwest
home to the hospital on the
east coast, hidden in my
suitcase I brought a black dress.
Was I keeping this dress the way
I sometimes carry an umbrella?
If I have an umbrella it won’t
rain. When Sam died I had been
there with nothing black.
• While Will was so sick, a deep
quiet , completely unfamiliar
sorrow descended on me, my
life felt suspended
• Even now years later I cannot
shake the catastrophic thinking.
• Finally Will went home and I
threw the black dress in the
trash

Being There
MarthaMontello,PhD
• Many of the stories that parents write about
NICU experiences are litanies of terror, anger,
and sadness
• Ours certainly has its share of all three
• But at it's heart it’s a success story
• A story of medicine doing everything it could and
succeeding
• A child who should have died, lived.

Choosing the Road Less Traveled”
BarbaraFarlow.BE,MBA
• It has been 5 years since
the summer of our
daughter’s 80-day life
• Prenatal screening
revealed Trisomy 13 and
we planned to lover her
cunconditionally. Jd
• Our love for our other
children did not correlate
with their abilities
• We loved them simply
because they were our
children

“Choosing the Road Less Traveled”
BarbaraFarlow.BEng,MBA
• Late one night a doctor
wanted to know why we
wanted a disabled child to
live..why we wanted her to
suffer
• I said…That’s MY daughter
and WE LOVE HER!”
• Annie arrived home to a
driveway full of encouraging
chalk messages including
• “ Annie kicks butt”
• Annie knew she was loved.
• Her first smile was pure
magic

Key Themes for Parents
•Perspective
•Cherishing the moment
•Transitioning to a new role
•What really matters/Honoring
Choices
•Fear (Holding your breath)
• Guilt/Regrets

“Something is Not Right”
VickiForman
• In the first days and weeks
after our son Evan was born,
at 23 wks weighing only 1
pound we heard the phrase,
“We’re waiting for him to
declare himself “..a lot.
• Until Evan’s birth I had never
encountered a situation that I
could not fix or abandon
• Finally there was the essential
NOT KNOWING what Evan’s
course would be

“Something is Not Right”
VickiForman
• I was convinced that by missing the signs and
symptoms of preterm labor..I was to blame. Stupid I
told myself…Stupid.. Stupid.
• “Today I read that fetal cells migrate to the mother’s
brain and live there for up to 27 years.
• This is why we blame ourselves as mothers, because
the cells are there: to tell us there is risk and danger,
to help us prevent tragedy.
• Because I didn’t listen to the cells, or myself, I had
altered my family and now our lives forever.

GET OVER IT
• I almost burst out
laughing if someone tells
me to get over it. How
would they feel if I told
them to stop loving their
child? It just isn't that
easy is it? If someone
tells you to "Get over it"
what they are really
trying to say to you is
"Your grief is making me
feel uncomfortable". You
know what... I am pretty
sure they will survive :)
Don't ever stop loving.

How can we better communicate
support/connect with our
families…what is EMPATHY?

EmotionalEmpathyCase Examples
•Family with new micropreemie who is
now stable comes to NICU to visit the
infant the NICU RN offers mom the
opportunity to kangaroo care but
mother refuses and begins to cry
•What themes are at play?
•How can you support the family?

Emotional Empathy Case Examples
• A family with a feeder and grower in the
Special Care Nursery arrives to do a feed.
They are 10 minutes late and the feed has
been started. The family becomes very
angry…which seems out of proportion to
the event.
• What themes are at play
• How can you diffuse the situation?

• An infant is stable in the newborn nursery. Mother is
exclusively BF and family has requested no pacifiers. The
infant had a card on the isolette that said not pacifiers
the previous day but today he does not have one. During
the morning assessments infant was very irritable and
given a pacifier briefly. When he returns to the parent’s
room the pacifier is in the bed and mother becomes
upset. Later the infant refuses to BF which adds to
mother’s frustration.
• What themes are at play
• How do your respond

• You are taking care of a surviving twin who is now 6
weeks old and doing well. Today the infant was
transitioned off the respirator to CPAP but instead of
being happy the family is anxious, upset, and tearful.
• What themes are at play?
• How can you help the family?

• An extremely preterm infant in the NICU has been on the
oscillator for 1 week needing a high amount of oxygen. The
family has not yet been able to hold him. Today the infant had
an ultrasound which revealed a grade IV bleed on the left. The
medical team has called a parent conference to speak with
family about withdrawing care because the infant is suffering.
The family becomes very upset and wants to know why the
team believes they are letting their child suffer?
• How do you address support/this family?

• A former 26 weeker is now 34 weeks old and working on feeds.
The infant has a history of BPD, NEC and a Grade III IVH. She
currently has an osteomy. She is having lots of trouble nippling
and may require g-tube. When the mother visits she is always
happy and talking about her plans for the infant and her other
siblings. When the medical team talks to her about the IVH risk
for cerebral palsy, likelihood of gtube and prolonged stay due to
high oxygen requirement mother always says my baby will be
fine. Now mother is not visiting as often and staff is frustrated
that she is in denial, that she put this baby through all of this and
now she is not coming.
• How can we support this mother?

Emotional Empathy Foundation
• Honest and complete information
• Ready access to staff
• Communication and care coordination
• Emotional expression and support by staff
• Preservation of the integrity of the parent-child
relationship
• Faith
Meyer, et al; Pediatrics, 2006

COMMUNICATING : HOPE
• H onesty
• O pportunities and Options
• P lan and Purpose
• E xpectations

PREEMIE VOICES
• https://vimeo.com/1
11486911
• http://Saigalpreemie
voices.com

About Matters
By: Mattie Stepanek
What really matters
is choosing.
What really matters
Is not merely
Being aware or
Knowing about or
Considering attentively.
What really matters
Is choosing.
What really matters
Is choosing
With a clear and gentle heart
In all matters.

Final Thoughts
• Remember perspective,
perspective,
perspective
• Ask yourself what
themes are at play
• Ask what is there
biggest concern today
right now
• Remember
HOPE..especially
options!

NTANN Been there Haven't Done That Emotional Empathy...Supporting NICU Parents

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