June 2007 ISTS © CLIMB and Dr. Pector
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
June 2007 ISTS © CLIMB and Dr. Pector
Maternal & Perinatal MortalityUnited States live plural births are still rising
1989 92,9162002 132,549 (nearly 1/4 of all LBW are multiples)2003 136,3282004 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.
April 21, 2006 NAPSW © CLIMB and Dr. Pector
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
June 2007 ISTS © CLIMB and Dr. Pector
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.
June 2007 ISTS © CLIMB and Dr. Pector
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
June 2007 ISTS © CLIMB and Dr. Pector
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
June 2007 ISTS © CLIMB and Dr. Pector
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
June 2007 ISTS © CLIMB and Dr. Pector
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?
June 2007 ISTS © CLIMB and Dr. Pector
Response: VOICES of griefEach 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
June 2007 ISTS © CLIMB and Dr. Pector
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.
June 2007 ISTS © CLIMB and Dr. Pector
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 CLIMBfamilies who have had a loss in one multiple pregnancyhave another, intact set of multiples.
June 2007 ISTS © CLIMB and Dr. Pector
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)
June 2007 ISTS © CLIMB and Dr. Pector
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.
June 2007 ISTS © CLIMB and Dr. Pector
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
June 2007 ISTS © CLIMB and Dr. Pector
Contact info & resources
[email protected], Jean Kollantai
Synspectrum.com/[email protected], Beth Pector