A Potpourri of Multiple-Birth Loss

1. A Potpourri of Multiple-Birth Loss Elizabeth A. Pector, M.D. Spectrum Family Medicine, S.C. & Jean Kollantai President and Founder, Center for Loss in Multiple Birth ISTS

2. Maternal & Perinatal Mortality United States live plural births are still rising 1989 92,916 2002 132,549 (nearly 1/4 of all LBW are multiples) • 136,328 2004 139,495 (50% increase over 1989) U.S. maternal deaths: multiple was 3.6 times singleton rate, 1979-2000. U.S. 1989-99. Twin neonatal mortality dropped 37%, stillbirth dropped 48%. • U.S. 2004: Twins have 5 times, triplets 9 times, and quadruplets 28 times, higher infant mortality than singletons. • 4,249 deaths of liveborn multiples • U.S. 2004: Multiples had 3% of live births, 15% of infant deaths. • U.S. 2003: Multiples had 3% of live births but 9% (2,336) of fetal deaths. • U.S 2003:Twins have 3 times, triplets 4 times, higher fetal mortality than singletons. • African-American multiple loss rates much greater than white. • Sweden 1991-2001:Twins have 2.4 times, triplets 5.8 times, higher stillbirth than singletons. Absolute number of perinatal multiple deaths roughly stable for 20 years. Intact sets will suffer loss as they age in decades to come. ISTS

3. Types of Multiple-Birth Loss • First to Second Trimester (before viability) • Spontaneous loss of all fetuses • Spontaneous loss of some fetuses: “going longer” • Intrauterine demise • Delayed interval delivery • Adverse prenatal diagnosis: “knowing ahead” • Anomaly • Monochorionic complications…TTTS, MCMA, conjoined • Iatrogenic: “best of difficult choices” • Multifetal pregnancy reduction (MFPR) • Selective termination • Third trimester & neonatal-stillbirth • Complicated delivery, prematurity, anomaly • Later Infancy & childhood • Late effects: birth event, prematurity or anomaly • SIDS, SUDC • Accidental, illness, rare intentional harm to child • Teen or adult losses • Combinations of any or all of the above NAPSW

4. Fetal loss: prognosis for survivor • Co-twin prognosis following 1 twin’s demise after 14 weeks: • 2nd twin demise: Monochorionic 12%, dichorionic 4% • Survivor neurologic abnormality: Monochorionic 18%, dichorionic 1% • Ong et al, BJOG 2006 113(9):992-8. • Survivor cerebral palsy: possible slight increase after vanishing twin • Newton et al, Twin Res 2003 6(2):83-4. • Pinborg et al, Hum Reprod 2005 20(10)2821-9. ISTS

5. Grief with multiples • 6 key concepts (CLIMB) • Complicated, simultaneous • Essential to acknowledge all multiples • Loss of once-in-a-lifetime parenting opportunity or unique sibling relationship. • Entire experience colors every part • Long process of putting pieces into a whole • Care as for singleton bereavement, + multiple-specific • Overwhelming confusion & uncertainty ISTS

6. Grief with multiples • Loss of all multiples: (35% of CLIMB membership) • Longer, more intense than singleton. Most go on to become parents through own pregnancy or adoption. • Loss of some multiples: • Longer, as intense as singleton. Often consider survivors part of the original group. 2 surviving triplets are NOT twins! • Toddler-age, childhood bereavement: • Influence of age, stage, ? zygosity • Teen bereavement: • Influence of age, development, multiple relationship • Adult bereavement: • Equal or greater than for other family, spouse (MZ); Influence of gender & zygosity • Risk of complicated grief for parents and for surviving siblings at all ages ISTS

7. Perinatal/child grief complicating factors • Infertility, multiples, medical trauma to mother, prematurity, disability, all increase depression risk for parents. • Medical & ethical questions, second-guessing • “Did we & the doctors do the right thing?” Little guidance. • Rare situations, exploring medical literature. • “Multiple encounters” • Encounters with multiples in medical settings, family, friends, public, media: parents recall the loss of “my multiples” • Comments from those who are unaware or will not acknowledge loss (especially 2+ survivors) • Raising survivors, relating to their loss ISTS

8. Family & social issues in loss • Family = co-multiple, parents, grandparents, siblings, friends. • Communication is critical; relationships are strained. • Importance of child/adult co-multiple involvement in funerals • Isolating factors: • Multiple-loss itself is rare, poorly understood • Unusual family/s (same-gender, surrogacy, adoption) • Disenfranchisement: “You still have one.” “Two out of three is ok.” “You lost too many.” “That’s what you get for playing God.” • Later functioning • High risk for complicated grief (perinatal and later) • Risk for suicidality in adult surviving twin after co-twin suicide • What is “OK” after 3-5 years, 5-10 years, & later? ISTS

9. Response: VOICES of grief Each loss is unique. Respect differences, privacy. • Validate: Acknowledge loss of individual(s) AND of group identity. Verbalize: Ask the bereaved about feelings, desires & choices. • Orient, inform: Offer information on all grief/disposition options. • Involve: Encourage memories & keepsakes of each multiple & the set together. (14-15 wk demised fetus visible at term) • Viewing, holding, photos, clinical mementos, sketches • Matching items for each multiple, living and dead • Caregiver letters for each multiple • Ask about cultural or religious desires, prohibitions. • Community/Counseling Offer counseling & peer support…more than once • Exit strategy: Help with decisions, logistics (transfer mom/stable neonates/deceased), out-of-hospital care. • Support: After the hospital • Creative ideas for remembrance • Support options ISTS

10. Progress in loss support since 2002 • CLIMB website • Other Internet support groups & sites • Collaboration with COMBO organizations • Translations of CLIMB & other loss information (i.e. Multiple Births Canada) • French, Spanish, Chinese, Russian…German to come • Dependable support for bereaved parents and adult survivors in many countries • US, UK, Canada, Australia, New Zealand • Empiric research (MPR, Dr. Pector’s perinatal loss surveys) • Grief is still profound, but can proceed without anger over lost opportunities when parents get appropriate mementos. • Parents inform survivors of loss, respect their level of grief (or lack of grief), recognize it will differ from their own. ISTS

11. Multiple multiples: 2 sets of identical twins“Nothing will ever replace or make up for it…mementos are critical.” having twins again has gone a long way to healing. At times I feel selfish that there is a void &…no matter what joy we have with B. & R. it can never replace what has been lost. -- dad who lost the first set of identical twin boys, had a second set of identical boys 2-3 yr later. 11% of CLIMB families who have had a loss in one multiple pregnancy have another, intact set of multiples. ISTS

12. More work remains! • Research is needed on: • Loss of all multiples • Outcome of survivors of co-twin fetal loss (all trimesters) • Loss of some high-order multiples with 2+ survivors • Parent needs & support in NICU after multiple loss • Effective outreach to ethnic minorities for multiple loss • Support for repeat multiple gestation (“multiple multiples”) • Late follow-up of MPR families, and communication with living children about MPR • Loss of a multiple to SIDS: specific support for parents and survivors • Loss of a multiple as a toddler or young child: specific support for parents and survivors • Results of counseling & support groups for parents & survivors (including adult survivors of vanishing twins) • Research using the pair method of twin mortality (Rebecca Hartman, PhD) ISTS

13. Cultural factors • Varied beliefs about multiples’ origins & traits • Desired, good luck, godly, returning ancestors • Evil, bad luck, devil/animal, result of infidelity • Shared soul, one’s death may lead to other’s death without proper precautions; both lonely • Treat multiples reverently or equally to avoid death • Faith & religious tenets don’t always comfort. • Suggest all bereavement options, including those not ordinarily accepted in one’s faith background. • Some have prohibitions on seeing, naming. Some African cultures avoid grief for one twin’s death. • Some faiths require prompt burial; limited time to obtain memories & mementos. ISTS

14. Cultural factors • Alternative health and belief systems • “Myth of the vanishing twin” (Schwartz) • Postulated lifelong impact of early fetal loss • Prenatal psychology, alternative psychotherapy • Support groups, or minorities, may reject “medical model” of grief. • Internet culture • International, multilingual support • Information available anonymously • Easily accessible support for unusual losses • Rapid intimacy in discussing difficult topics • Some information of dubious quality • Potential deception, anger, rants ISTS

15. Contact info & resources • Climb-support.org • climb@pobox.alaska.net, Jean Kollantai • Synspectrum.com/multiplicity.html • synspectrum@yahoo.com, Beth Pector ISTS