Transcript Slide 1

Multiple Birth Loss:
Helping Parents Heal
Elizabeth A. Pector
Amy Hodge
Pam Chay
synspectrum.com/articles.html
March 4, 2005
March of Dimes
Perinatal Conference
Multiple fast facts
• Incidence
– Twins occur 1/89 unassisted pregnancies; now 3% of U.S.
babies are multiples
– Of triplet+/high order multiples (HOMs): 40% are from
ovulation drugs, 40% ART, 20% spontaneous
– Fertility: 8% pregnancies after Clomid, 18% after Pergonal.
– 22-29% after ART are twins, 3.8% of ART pregnancies are
HOMs
• Dizygotic (DZ, fraternal)
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2/3 of all multiples
More common after fertility treatment
Always 2 placentas (which sometimes fuse)
DZ twins “run in families;” one mom may have multiple
multiples
– Outlook better for DZ than MZ after intrauterine demise
March 4, 2005
March of Dimes
Perinatal Conference
Multiple fast facts
• Monozygotic (MZ, identical):
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Spontaneously 1 in 250-300 pregnancies
Occur 3-20x more often with fertility treatment
1/3 of all multiples: “always” same sex (rare XO/XY)
Placenta/amniotic sac combinations:
• Dichorionic-Diamniotic DCDA 2 placentas & sacs (30%)
• Monochorionic-Diamniotic MCDA 1 plac., 2 sacs (65-69%)
• Monochorionic-Monoamniotic MCMA shared placenta & sac
(1-5%, includes conjoined, TRAP)
– TTTS in 15% of monochorionic pregnancies
– After MC intrauterine demise: 20-25% neurodevelopmental
problems, 25% death of remaining fetus due to placenta
cross-circulation
March 4, 2005
March of Dimes
Perinatal Conference
Multiple fast facts:
Twinning Mechanisms
65-69%
MCDA
1-5%
MCMA
30%
DCDA
1/3 Identical 2/3 Fraternal
Diagram: Dorland’s Medical Dictionary
March 4, 2005
From: Bioethics.gov
March of Dimes
Perinatal Conference
Multiple fast facts
• MZ and DZ multiples may coexist in
triplet+ pregnancies
• Same sex, 2 placentas…
test
zygosity!
March 4, 2005
March of Dimes
Perinatal Conference
Multifaceted loss
• Parents lose not only their child/children, but:
– A unique parenting opportunity
• Status of being parents of starting number of multiples
• Challenge and joy of helping multiples grow:
– as individuals
– in a unique sibling relationship with each other
• Some lose any chance to raise a family
• Losses occur more often among multiples than
among singletons. Loss may follow infertility,
high-risk pregnancy, or long NICU stay
March 4, 2005
March of Dimes
Perinatal Conference
Multifaceted loss
• Multiple realities:
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Medical, ethical, logistical dilemmas
Different problems in different fetuses/neonates
2 losses at different times
2 or more survivors
• Multiple added losses:
– Infertility, prematurity, NICU, disability
– Sometimes: marriage, financial, mental/physical
health
March 4, 2005
March of Dimes
Perinatal Conference
Multifaceted loss: scenarios
• First trimester:
– Complete miscarriage
– Vanishing twin/triplet
– Multifetal pregnancy reduction (MFPR)
• Second to third trimester:
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Complete miscarriage or stillbirth
Intrauterine demise of one/some fetuses
Delayed interval delivery
Selective termination for anomaly/complication
Delivery before, or at limits of, viability
Intrapartum demise
March 4, 2005
March of Dimes
Perinatal Conference
Multifaceted loss: scenarios
• Neonatal and later
– Complications of prematurity or anomaly
– Sudden infant death syndrome
– Accidental death
• Situations with high risk of loss or disability
– Serious anomaly (more common in multiples, especially MZ;
usually discordant: not all affected.)
– Twin-to-twin transfusion (15% MC pregnancies)
– Monoamniotic, including Twin-Reversed Arterial Perfusion,
conjoined twins
– High-order multiples (triplets and more)
– Intrauterine death of a MC multiple
March 4, 2005
March of Dimes
Perinatal Conference
Factors that influence grief & mourning
• Personal, family, social:
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Personality and intrinsic coping abilities
Cultural and religious background
History of infertility or prior loss
Number of survivors (0,1,2+)
Multiples in the family or neighborhood
• Medical:
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Zygosity and gender of deceased & survivors
Cause and timing of loss
Controversial decisions
Consideration of malpractice suit
March 4, 2005
March of Dimes
Perinatal Conference
Grief vs. Depression
Grief
Depression
Focus on deceased.
Accepts warm support
Focus on self.
May not respond to support
Mood changes; angry, agitated, Mood stays down; low energy
restless.
and motivation.
Can care for self, others & daily Can’t care for self or others;
tasks; can concentrate & plan
can’t think, work, plan future
Gradually laughs, can enjoy
others, world, usual activities
Guilt in laughter, no pleasure,
hopeless, withdrawn
Acknowledges loss, meaning
Loss denied or meaningless
Adapted from Dyer, 2001; and Limbo & Wheeler, 1998.
March 4, 2005
March of Dimes
Perinatal Conference
Hope in all seasons of grief
March 4, 2005
March of Dimes
Perinatal Conference
First rules of helping
• Remember: Bereaved parents are individuals.
– Not all respond to loss in the same way.
– Feelings may include: numb, overwhelmed, shocked,
confused, ambivalent, relieved, hopeful, rejoicing,
despairing, searching for info & meaning.
– Greater risk of depression; but not all are depressed.
– A grieving parent wants information, but may need it
presented several times, in different ways, before
understanding.
• To understand bereaved parents and their needs:
– Ask appropriate, non-intrusive, questions.
– Offer available options; ask which seem most suitable.
– Ask specifically how you can help.
March 4, 2005
March of Dimes
Perinatal Conference
How to give bad news
• Environment
– In person, quiet room, support person present.
– Don’t leave mom alone/isolated, but allow needed privacy.
• Clear, direct terms
– “I’m so sorry, but your baby has died.”
– Show the absent heartbeat/fetal abnormality to both
parents.
• Address the partner
• Give the amount of information parents can handle
acutely
– They won’t retain many facts, but vividly remember how
they heard the news.
– Follow with detailed conference soon after.
• Expect emotions, shock, etc.
March 4, 2005
March of Dimes
Perinatal Conference
Loss of all multiples:
double distress, triple tragedy
• Grief more intense, and longer, than singleton
– Average 18 months to resolution (much variation)
– Loss all at once vs. one at a time
– Not a loss of a “group baby,” but individuals
– May not be able to get mementos of entire set when
losses occur over time
March 4, 2005
March of Dimes
Perinatal Conference
Loss of some multiples: bittersweet
• Grief just as intense, and longer, than loss of singleton.
– Up to 3-5 years before resolution.
• 2 survivors are not twins.
• Complications: joy and sorrow intertwined
– Reminders of the deceased in the living
• A minority have trouble attaching to survivors due to:
– fear, worry, reminders of loss, stress of NICU
• Suppressed or delayed grief
• Prematurity, special needs, grief & depression affect
breastfeeding, parenting
• Disenfranchised grief: caregivers, families, society don’t
understand.
• Loss may affect survivor medically.
March 4, 2005
March of Dimes
Perinatal Conference
Memories, mementos, support
• Time & photos with all multiples together, and each
alone.
– Photos with and without parents
– Consider photo with parents nicely dressed
• Matching mementos: name bands; footprints all together
on a card, + separate; ultrasounds, sketches
• Caregiver letters or attending memorials
• Followup calls: ? 3, 6, 12 months (with parent
permission)
March 4, 2005
March of Dimes
Perinatal Conference
Mementos
March 4, 2005
March of Dimes
Perinatal Conference
Shadow Dancer
"Shadow Dancer" was written 1/20/00 on the night of a lunar eclipse, to honor the twins’
3rd birthday and recalling Comet Hale-Bopp March-Apr ‘97.
Shadow Dancer
Bryan's light
Illuminates your energy.
Laughing Mirror
Grief eclipsed the joy
That you reflect to me.
Heaven's Wonder
Tiny infant's comet
Blazed across the sky.
Three years later
Loving Jared,
Still I miss my "Gemini."
March 4, 2005
March of Dimes
Perinatal Conference
Faith and Grace
Amy’s Story
When multiples interrelate in gestation
• Interrelation between multiples
observed in ultrasound studies
– 10-12 weeks – monochorionic twins
(identicals) respond to one another
– 13 weeks – dizygous twins
(fraternals) respond to co-twin
kicks
– 15 weeks – all multiples react to
stimulation by wombmates
– Implications for survivor grief
Twin to Twin
Transfusion Syndrome
From TTTS Foundation
Twin to Twin
Transfusion Syndrome
•Affects 10-15% of
monochorionic twins
•Shared placenta with
connecting blood vessels
•Donor Twin: anemia, heart
failure, IUGR, oligohydramnios
•Recipient Twin: heart failure,
kidney failure, polyhydramnios
•Maternal complications:
Clinical malnutrition, anemia,
hypoproteinemia
•Placental Laser Surgery is the
only treatment which cures
TTTS. Go to
www.TTTSMD.com
Grieving & Going Longer in pregnancy
• Initial shock
• Grief responses and prenatal health
• rest and diet
• fear and anxiety
• high risk becomes higher risk
• Support in bereaved pregnancy
• Integration of pregnancy resources with grief
resources: compassionate and realistic
information
• Acknowledge all babies
• Assume nothing
• Facilitating connections with helpful others
• Listen, listen, and listen!
Birth issues
• Birth Plan
– As much or as little medicinal pain control as necessary
– Encourage parents to hold and/or see departed twin, but
don’t insist
• Respect
– We cannot always control how a labor progresses, but we
can control how we care for mothers
– Silence can be oppressive / Inform parents of what is
happening
• Let the parents react first
• Collect remembrances of deceased child
• Photos:
– babies together, with/without parents
– each baby separately, with/without parents
Birth issues
• Time and space for hello and goodbye
• Placental analysis protocols / autopsy
• Immediate, competent breastfeeding
support
• Labor, delivery, recovery trauma
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Pain, fear, tension cycle
Location and tone of the birth
Staff responses
Where is the mother on the unit?
• Immediate grief support that dwindles
– Distraction of NICU makes mother
unreceptive to offers to “talk about it”
– Friends and family relieved that the ordeal is
“over”
Funeral planning
• If survivor is very ill,
some choose to wait
• There is no template
for infant burial, no
cultural pattern per se
• Cemetery regulations
• Quick decisions
• Family pressure
• Maternal recovery
Grief unacknowledged by caregivers and social circle
• Reconciling feelings of loss with others’
unwillingness/inability to acknowledge that
there was another baby
• The natural, reasonable, shifting forms of
grief are generally not tolerated by others
– Emotions: Am I crazy?/ Sleeplessness / Rage
– Temporary inability to “get back in the swing of
things”
– People always change the subject
– Injudicious offers of psychotropic drugs –
known and unknown impacts
Saying the wrong thing
Minimizing
Denial
Theological Conjecture
Shame & Blame
Medical Speculation
Half-hearted Help
Just Plain Mean
Not Getting the Facts
Helpful Consolation
Understanding
Acknowledging
Mentioning God
Support
Remembering the Medical Crisis
Real Help
Just Plain Nice
Getting the Facts
Homecoming and parenting
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Lack of maternal confidence
Seeing things
Grief affects milk supply
Inability to bond
Hypervigilance
A surviving twin is
a reminder and
a consolation
• Strangers’ questions
about pregnancy
and baby
•How many children
do you have?
• Joyful occasions are
bittersweet
Photo by Richard Marshall, St. Paul Pioneer Press, c2001
Contribution of doula
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Reassurance
Emotional Support
Physical Comfort
Assistance with information
Support that compliments medical
care
www.dona.org
Pam’s Story
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The Journey Begins
It’s twins…
it’s triplets!
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Shock/ denial
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Anxiety / depression / anger
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Bargaining/acceptance
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Adaptation
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Three babies! Is this a
fairytale?
Pregnancy
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Healthcare workers realize the potential reality of a
poor outcome
Helpful?
Stress level increased due to knowing all possible
outcomes
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Bargaining to continue working on a busy Labor and
Delivery unit
Too many contractions
Effaced cervix
Unable to work beginning at week 21
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Three Little Boys
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PPROM: Delivery at 27
weeks
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Baby A: Alex 515 grams;
IUGR, low AFI, not
expected to live
Baby B: Brendan 870
grams; IUGR
Baby C: Collin 770 grams;
IUGR
Breast Milk
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Benefits of preterm breast milk
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Staff can be very influential in
promoting breastfeeding
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Start mom pumping within 6 hours
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Provide both, verbal and written
instructions
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Offer immediate access to support,
and necessary equipment
Preemie and Breastfeeding
Resources
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“A Preemie Needs his Mother”
“Mothering Multiples”
Pump rental information
Follow with a visit from a breastfeeding specialist
 Providing breast milk is reassurance for mother
Avoid sabotaging mother’s goals
Multiples in the NICU
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20% of all multiples admitted to NICU
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¼ of twins
¾ of triplets and quads
Average length of stay
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Twins 18 days
Triplets 30 days
Quads 58 days
Families are in for the long haul!
Effects on the Family
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Emotional stress/ups and downs
Unknown survivability
Siblings may suffer
Jobs may be sacrificed
Look forward to going home
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Unknown long-term outcome
Many still require more care than a full-term baby
NICU: Sources of Stress
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Parents feel they are at the mercy of staff
Unfamiliar territory (Whose turf is it?)
Unfamiliar medical technology
Protocols can be confining – visitation
restrictions
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Shift change
Multidisciplinary Rounds
Help Families Cope
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Ease parents’ stress
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Family centered care
Assess visitation
policy
Orient to NICU
Address parental
emotions first
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Acknowledge parents
fears, concerns and
uncertainty
Communicate
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Assess parents’ knowledge level
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Do not assume parents who are medical
professionals understand NICU lingo
Do not assume parents are ignorant
Use sensitive comments
Staff can help create memories
Create Special Moments &
Memories
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Kangaroo care
Membership to 1000 gram
club
Seeing, holding and pictures
of all multiples
Notes to parents from babies
Babies wearing “real clothes”
Beginning the discharge
process
High Risk for Postpartum
Depression
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Infertility, loss
Breastfeeding challenges
Separation from babies
Traumatic or unexpected
birth experience
Lack of sleep
Both parents at high risk!
The Story Continues:
What is a bad day?
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Brendan having a “bad” day
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Increase in apnea episodes
Decrease O2 sats
Numerous lumbar punctures
Diagnosis
 Late-onset GBS meningitis
Alex diagnosed with GBS sepsis
Is Collin at risk?
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Treat prophylactically?
Rifampin for Collin
Unexpected Scenario
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During an unstable
situation…
 Notify parents ASAP
 Be honest about grim or
uncertain prognosis
Don’t create barriers by
keeping information
In the Last Moments
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During a code
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Remove visitors of other babies
Allow parents to choose whether they remain in
room
Allow parents opportunity to hold infant
Death of a baby
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It is absolutely acceptable for staff to cry with the
family
Grieving in NICU
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Parents must return to NICU
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Interrupted/delayed grief
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Want survivors home
Fish bowl phenomena
Other parents avoid contact
Distraction of NICU may make parents
unreceptive to offers to “talk about it”
Assess their comfort level
Fear for survivors health
Exaggerated emotions
Multiples everywhere
Treat Parents Gently
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Helpful
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Can staff move
survivor away from
intact sets
Discuss crib card label
Mention deceased
baby
Examine policies
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Listen to what is
important to parents
Support breastfeeding
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Hurtful
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Intact sets of multiples
Sabotaging breastfeeding
“I don’t want to remind
them of their loss”
Comments: “he is not a
twin; the other baby died”
Lack of resources on
multiple birth loss
Our Journey Continues
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Brendan home
Alex unstable,
transferred to CMH
Liver failure; needs a
transplant
Miraculous recovery
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ALEX COMES
HOME!!! after 131
days in the NICU
Professional Issues
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Supporting others through a life changing
experience
Do you have children?
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Need supportive co-workers
Self preservation
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How do I answer?
Raw emotions
Transfer out of L&D
Perfect job opportunity
Remembering
Labeling Survivors
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Two triplets are not twins
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Two quads are not twins
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How do the parents refer to the survivors?
Life goes on
Although my "fairy tale”
ending is forever
changed…
Cases
Consider challenges and solutions in these areas:
• Medical
• Ethical
• Logistical
• Grief support
• Health professional reaction
March 4, 2005
March of Dimes
Perinatal Conference
Take-home points
• Each bereaved parent and each loss are individual.
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Assume nothing.
Respect privacy. Some need to talk; others mourn privately.
Ask gentle questions. Listen and follow parents’ lead.
Offer condolences. Avoid platitudes and “quick fixes”.
• Grief is not the same as depression.
• Grief may last a long time.
– It may be suppressed/delayed.
– Remember anniversaries. Keep in touch.
• Grief is only part of the picture.
– Support NICU, prematurity, disability, & other concerns.
• Peer support and handouts are appreciated.
– Refer to local parents and to formal organizations.
– Consider starting NICU or grief support with trained volunteers.
• Caregivers grieve, too! Care for yourself; talk with peers.
March 4, 2005
March of Dimes
Perinatal Conference