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) – – – – 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 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: – – – – 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, 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 – – – – 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 • • • • • • 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’s Story The Journey Begins It’s twins… it’s triplets! Shock/ denial Anxiety / depression / anger Bargaining/acceptance Adaptation Three babies! Is this a fairytale? Pregnancy Healthcare workers realize the potential reality of a poor outcome Helpful? Stress level increased due to knowing all possible outcomes Bargaining to continue working on a busy Labor and Delivery unit Too many contractions Effaced cervix Unable to work beginning at week 21 Three Little Boys PPROM: Delivery at 27 weeks 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 Benefits of preterm breast milk Staff can be very influential in promoting breastfeeding Start mom pumping within 6 hours Provide both, verbal and written instructions Offer immediate access to support, and necessary equipment Preemie and Breastfeeding Resources “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 20% of all multiples admitted to NICU ¼ of twins ¾ of triplets and quads Average length of stay Twins 18 days Triplets 30 days Quads 58 days Families are in for the long haul! Effects on the Family Emotional stress/ups and downs Unknown survivability Siblings may suffer Jobs may be sacrificed Look forward to going home Unknown long-term outcome Many still require more care than a full-term baby NICU: Sources of Stress Parents feel they are at the mercy of staff Unfamiliar territory (Whose turf is it?) Unfamiliar medical technology Protocols can be confining – visitation restrictions Shift change Multidisciplinary Rounds Help Families Cope Ease parents’ stress Family centered care Assess visitation policy Orient to NICU Address parental emotions first Acknowledge parents fears, concerns and uncertainty Communicate Assess parents’ knowledge level 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 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 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? Brendan having a “bad” day Increase in apnea episodes Decrease O2 sats Numerous lumbar punctures Diagnosis Late-onset GBS meningitis Alex diagnosed with GBS sepsis Is Collin at risk? Treat prophylactically? Rifampin for Collin Unexpected Scenario 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 During a code Remove visitors of other babies Allow parents to choose whether they remain in room Allow parents opportunity to hold infant Death of a baby It is absolutely acceptable for staff to cry with the family Grieving in NICU Parents must return to NICU Interrupted/delayed grief 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 Helpful Can staff move survivor away from intact sets Discuss crib card label Mention deceased baby Examine policies Listen to what is important to parents Support breastfeeding Hurtful 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 Brendan home Alex unstable, transferred to CMH Liver failure; needs a transplant Miraculous recovery ALEX COMES HOME!!! after 131 days in the NICU Professional Issues Supporting others through a life changing experience Do you have children? Need supportive co-workers Self preservation How do I answer? Raw emotions Transfer out of L&D Perfect job opportunity Remembering Labeling Survivors Two triplets are not twins Two quads are not twins 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. – – – – 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