march of dimes perinatal conference march 4, 2005 multiple birth loss: helping parents heal...

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

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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


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


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%


Multiple fast facts

• MZ and DZ multiples may coexist in triplet+ pregnancies

• Same sex, 2 placentas… test zygosity!


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


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


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


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


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


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.


Hope in all seasons of grief


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.


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.


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


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.


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)


Mementos


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."

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

– 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

RememberingRemembering

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.

march of dimes perinatal conference march 4, 2005 multiple birth loss: helping parents heal...

Documents

dz multiples

multiple multiples outlook

intrauterine demise

multiple birth loss

monochorionic pregnancies

art pregnancies

triplet pregnancies

mentalphysical health