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March of Dimes March of Dimes Perinatal ConferencePerinatal ConferenceMarch 4, 2005March 4, 2005
Multiple Birth Loss: Multiple Birth Loss: Helping Parents HealHelping Parents Heal
Elizabeth A. PectorElizabeth A. PectorAmy Hodge Amy Hodge Pam ChayPam Chay
synspectrum.com/articles.htmlsynspectrum.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)– 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):
– 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
Diagram: Dorland’s Medical Dictionary From: Bioethics.gov
1/3 Identical2/3 Fraternal
MCDA
MCMA
DCDA
65-69%
1-5%
30%
March 4, 2005 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:– 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:– 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:– 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:– 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, restless.
Mood stays down; low energy and motivation.
Can care for self, others & daily tasks; can concentrate & plan
Can’t care for self or others; 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
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
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 DancerBryan's light
Illuminates your energy.
Laughing MirrorGrief eclipsed the joy
That you reflect to me.
Heaven's WonderTiny infant's comet
Blazed across the sky.
Three years laterLoving Jared,
Still I miss my "Gemini."
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
•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
– 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
MinimizingDenialTheological ConjectureShame & BlameMedical SpeculationHalf-hearted HelpJust Plain MeanNot Getting the Facts
Helpful Consolation
UnderstandingAcknowledgingMentioning GodSupportRemembering the Medical CrisisReal HelpJust Plain NiceGetting the Facts
Homecoming and parenting
• 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
• Reassurance
• Emotional Support
• Physical Comfort
• Assistance with information
• Support that compliments medical care
www.dona.org
Pam’sPam’s StoryStory
The Journey BeginsThe Journey Begins
It’s twins… it’s triplets!It’s twins… it’s triplets! Shock/ denialShock/ denial
Anxiety / depression / angerAnxiety / depression / anger
Bargaining/acceptanceBargaining/acceptance
AdaptationAdaptation
Three babies! Is this a Three babies! Is this a fairytale?fairytale?
PregnancyPregnancy Healthcare workers realize the potential reality of a Healthcare workers realize the potential reality of a
poor outcomepoor outcomeHelpful?Helpful?Stress level increased due to knowing all Stress level increased due to knowing all
possible possible outcomesoutcomes
Bargaining to continue working on a busy Labor and Bargaining to continue working on a busy Labor and Delivery unitDelivery unit
Too many contractionsToo many contractionsEffaced cervixEffaced cervix
Unable to work beginning at week 21Unable to work beginning at week 21
Three Little BoysThree Little Boys
PPROM: Delivery at 27 PPROM: Delivery at 27 weeksweeks
Baby A: Alex 515 grams; Baby A: Alex 515 grams; IUGR, low AFI, not IUGR, low AFI, not expected to liveexpected to live
Baby B: Brendan 870 Baby B: Brendan 870 grams; IUGRgrams; IUGR
Baby C: Collin 770 grams; Baby C: Collin 770 grams; IUGRIUGR
Breast MilkBreast Milk Benefits of preterm breast milkBenefits of preterm breast milk
Staff can be very influential in promoting Staff can be very influential in promoting breastfeedingbreastfeeding
Start mom pumping within 6 hoursStart mom pumping within 6 hours
Provide both, verbal and written Provide both, verbal and written instructionsinstructions
Offer immediate access to support, and Offer immediate access to support, and necessary equipmentnecessary equipment
Preemie and Breastfeeding Preemie and Breastfeeding ResourcesResources
““A Preemie Needs his Mother”A Preemie Needs his Mother” ““Mothering Multiples”Mothering Multiples” Pump rental informationPump rental information Follow with a visit from a breastfeeding specialistFollow with a visit from a breastfeeding specialist
Providing breast milk is reassurance for mother Providing breast milk is reassurance for mother Avoid sabotaging mother’s goalsAvoid sabotaging mother’s goals
Multiples in the NICUMultiples in the NICU
20% of all multiples admitted to NICU20% of all multiples admitted to NICU ¼ of twins¼ of twins ¾ of triplets and quads¾ of triplets and quads
Average length of stayAverage length of stay Twins 18 daysTwins 18 days Triplets 30 daysTriplets 30 days Quads 58 daysQuads 58 days
Families are in for the long haul!Families are in for the long haul!
Effects on the FamilyEffects on the Family
Emotional stress/ups and downsEmotional stress/ups and downs Unknown survivabilityUnknown survivability Siblings may sufferSiblings may suffer Jobs may be sacrificedJobs may be sacrificed Look forward to going homeLook forward to going home
Unknown long-term outcomeUnknown long-term outcome Many still require more care than a full-term babyMany still require more care than a full-term baby
NICU: NICU: SSources of Stressources of Stress
Parents feel they are at the mercy of staffParents feel they are at the mercy of staff Unfamiliar territory (Whose turf is it?)Unfamiliar territory (Whose turf is it?) Unfamiliar medical technologyUnfamiliar medical technology Protocols can be confining – visitation Protocols can be confining – visitation
restrictionsrestrictions Shift changeShift change Multidisciplinary RoundsMultidisciplinary Rounds
Help Families CopeHelp Families Cope Ease parents’ stressEase parents’ stress
Family centered careFamily centered care Assess visitation Assess visitation
policypolicy Orient to NICUOrient to NICU Address parental Address parental
emotions firstemotions first Acknowledge parents Acknowledge parents
fears, concerns and fears, concerns and uncertaintyuncertainty
CommunicateCommunicate
Assess parents’ knowledge levelAssess parents’ knowledge level Do not assume parents who are medical Do not assume parents who are medical
professionals understand NICU lingoprofessionals understand NICU lingo Do not assume parents are ignorantDo not assume parents are ignorant
Use sensitive commentsUse sensitive comments Staff can help create memoriesStaff can help create memories
Create Special Moments & Create Special Moments & MemoriesMemories
Kangaroo careKangaroo care Membership to 1000 gram Membership to 1000 gram
clubclub Seeing, holding and pictures Seeing, holding and pictures
of all multiplesof all multiples Notes to parents from babiesNotes to parents from babies Babies wearing “real clothes”Babies wearing “real clothes” Beginning the discharge Beginning the discharge
processprocess
High Risk for Postpartum High Risk for Postpartum DepressionDepression
Infertility, lossInfertility, loss Breastfeeding challengesBreastfeeding challenges Separation from babiesSeparation from babies Traumatic or unexpected Traumatic or unexpected
birth experiencebirth experience Lack of sleepLack of sleep
Both parents at high risk!
The Story Continues: The Story Continues: What is a bad day?What is a bad day?
Brendan having a “bad” dayBrendan having a “bad” day Increase in apnea episodesIncrease in apnea episodes Decrease ODecrease O22 sats sats Numerous lumbar puncturesNumerous lumbar punctures DiagnosisDiagnosis
Late-onset GBS meningitisLate-onset GBS meningitis
Alex diagnosed with GBS sepsisAlex diagnosed with GBS sepsis Is Collin at risk?Is Collin at risk?
Treat prophylactically? Treat prophylactically? Rifampin for CollinRifampin for Collin
Unexpected ScenarioUnexpected Scenario
During an unstable During an unstable situation…situation… Notify parents ASAPNotify parents ASAP Be honest about grim or Be honest about grim or
uncertain prognosisuncertain prognosis
Don’t create barriers by Don’t create barriers by keeping informationkeeping information
In the Last MomentsIn the Last Moments
During a codeDuring a code Remove visitors of other babiesRemove visitors of other babies Allow parents to choose whether they remain in Allow parents to choose whether they remain in
roomroom Allow parents opportunity to hold infant Allow parents opportunity to hold infant Death of a babyDeath of a baby
It is absolutely acceptable for staff to cry with the It is absolutely acceptable for staff to cry with the familyfamily
Grieving in NICUGrieving in NICU Parents must return to NICUParents must return to NICU
Want survivors homeWant survivors home Fish bowl phenomenaFish bowl phenomena Other parents avoid contactOther parents avoid contact
Interrupted/delayed griefInterrupted/delayed grief Distraction of NICU may make parents Distraction of NICU may make parents
unreceptive to offers to “talk about it”unreceptive to offers to “talk about it” Assess their comfort levelAssess their comfort level
Fear for survivors healthFear for survivors health Exaggerated emotionsExaggerated emotions
Multiples everywhereMultiples everywhere
HelpfulHelpful Can staff move survivor Can staff move survivor
away from intact setsaway from intact sets Discuss crib card labelDiscuss crib card label Mention deceased babyMention deceased baby Examine policiesExamine policies
Listen to what is Listen to what is important to parentsimportant to parents
Support breastfeedingSupport breastfeeding
HurtfulHurtful Intact sets of multiplesIntact sets of multiples Sabotaging breastfeedingSabotaging breastfeeding ““I don’t want to remind I don’t want to remind
them of their loss”them of their loss” Comments: “he is not a Comments: “he is not a
twin; the other baby died”twin; the other baby died” Lack of resources on Lack of resources on
multiple birth lossmultiple birth loss
Treat Parents GentlyTreat Parents Gently
Our Journey ContinuesOur Journey Continues
Brendan homeBrendan home Alex unstable, Alex unstable,
transferred to CMHtransferred to CMH Liver failure; needs a Liver failure; needs a
transplant transplant Miraculous recoveryMiraculous recovery
ALEX COMES ALEX COMES HOME!!! HOME!!! after 131 after 131 days in the NICUdays in the NICU
Professional IssuesProfessional Issues
Supporting others through a life changing Supporting others through a life changing experienceexperience
Do you have children?Do you have children? How do I answer?How do I answer? Raw emotionsRaw emotions
Need supportive co-workersNeed supportive co-workers Self preservationSelf preservation
Transfer out of L&DTransfer out of L&D Perfect job opportunityPerfect job opportunity
Labeling SurvivorsLabeling Survivors
Two triplets are not twinsTwo triplets are not twins
Two quads are not twinsTwo quads are not twins
How do the parents refer to the survivors?How do the parents refer to the survivors?
Life goes onLife goes on
Although my "fairy tale” Although my "fairy tale” ending is forever ending is forever
changed…changed…
March 4, 2005March 4, 2005March of Dimes March of Dimes
Perinatal ConferencePerinatal Conference
CasesCases
Consider challenges and solutions in these areas:Consider challenges and solutions in these areas:
• MedicalMedical
• EthicalEthical
• LogisticalLogistical
• Grief support Grief support
• Health professional reactionHealth professional reaction
March 4, 2005March 4, 2005March of Dimes March of Dimes
Perinatal ConferencePerinatal Conference
Take-home pointsTake-home points• Each bereaved parent and each loss are individual.Each bereaved parent and each loss are individual.
– Assume nothing. Assume nothing. – Respect privacy. Some need to talk; others mourn privately.Respect privacy. Some need to talk; others mourn privately.– Ask gentle questions. Listen and follow parents’ lead.Ask gentle questions. Listen and follow parents’ lead.– Offer condolences. Avoid platitudes and “quick fixes”. Offer condolences. Avoid platitudes and “quick fixes”.
• Grief is not the same as depression.Grief is not the same as depression.• Grief may last a long time.Grief may last a long time.
– It may be suppressed/delayed. It may be suppressed/delayed. – Remember anniversaries. Keep in touch.Remember anniversaries. Keep in touch.
• Grief is only part of the picture.Grief is only part of the picture. – Support NICU, prematurity, disability, & other concerns.Support NICU, prematurity, disability, & other concerns.
• Peer support and handouts are appreciated.Peer support and handouts are appreciated.– Refer to local parents and to formal organizations.Refer to local parents and to formal organizations.– Consider starting NICU or grief support with trained volunteers.Consider starting NICU or grief support with trained volunteers.
• Caregivers grieve, too! Care for yourself; talk with peers.Caregivers grieve, too! Care for yourself; talk with peers.