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2002 Selected Articles

Bereavement in Multiple Birth
Part 2: Dual Dilemmas

Elizabeth A. Pector, MD; Michelle Smith-Levitin, MD

Complicated fetal/infant loss scenarios in a multiple gestation may impede, delay, or prolong parental mourning. In part 1 of this series, the authors presented general recommendations for psychological support of bereaved families of multiples, and they listed a variety of bereavement resources.¹ In part 2, the authors focus on special considerations for particularly challenging circumstances and list support resources for these specific situations (Box). Physicians and parents should understand that some of the organizations cited may be biased toward certain treatment approaches or specialists.

INTRAUTERINE DEMISE

Parents continuing a pregnancy with surviving fetuses after the death of one or more multiples in utero confront the paradox of life and death together.² A delay between diagnosis and delivery allows for some mourning during pregnancy, but grief can resurface at delivery.³ Some women feel deep, unrelenting sorrow throughout pregnancy. Others suppress grief because they are concerned that its expression might harm the healthy fetus(es). A third group adapts after experiencing initial distress.

Many women who are carrying dead and living fetuses together feel both isolation and horror.⁴ They may worry about the health effects of the dead fetus on the live fetus(es) and on themselves. They may also express concern about the appearance of the dead child at the time of delivery.⁴ It is usually helpful to provide accurate information about the effects of loss on maternal and fetal health, and refer parents to knowledgeable counselors and organizations such as those listed in part 1 and in this article.^1,3-7

Continued presence of a deceased or abnormal multiple in utero must be sensitively acknowledged through the remainder of the pregnancy. Parents may prefer to schedule office visits when other expectant parents of multiples will not be there. Clinicians should offer to show parents the deceased fetus(es) during ultrasonographic examinations.⁷

Spontaneous Prenatal Loss

One or more embryos may "vanish" in the first trimester of a multiple pregnancy.⁸ Parents told of a multiple pregnancy at an early gestational age must be appropriately cautioned about such a potential loss.⁴ Some women mourn the early loss of one fetus, whereas others feel relief. Some may not grieve initially, but if another loss occurs later in pregnancy, the earlier loss assumes greater importance. An ultrasonographic photo can be offered, with reassurances that surviving fetuses are unlikely to suffer because of the loss.⁴ Clinicians must verify parental wishes on the number of children they wish to acknowledge: the number conceived or the number remaining.

If some multiples are lost after 15 weeks’ gestation, fetal remains can usually be identified when survivors are ultimately delivered.⁷ Caregivers must provide accurate information and support to parents and delivery-room staff regarding the deceased child’s likely appearance.⁴ The fetus papyraceous is recognizable as a baby, but it can exhibit anatomic distortion, flattening, maceration, and/or mummification.^7,9-12 Couples may need repeated explanations of any decisions to hasten or defer delivery of survivors. Third-trimester fetal death, especially near term, can be particularly shocking and distressing for parents.¹³

Iatrogenic Prenatal Loss

Multifetal pregnancy reduction (MFPR) can improve outcomes for women with high-order multiple gestations.¹⁴ The decision to undergo MFPR is often difficult, and partners may disagree.⁴ Preprocedure counseling about risks and benefits should include a discussion of the physical, psychological, and economic challenges of high-order multiple births, as well as the emotional reactions that can follow reduction.^4,8,15,16 Successful MFPR yields positive psychological outcomes for most families.^15,17 The procedure itself is often distressing,^16,17 but post-MFPR grief reactions usually do not exceed 1 month.¹⁷ However, moderate depression may occur in up to 33% of parents.^15,16 Anniversary reactions occur a year after MFPR in about 33% of parents; in most cases, however, grief or guilt resolves by the second anniversary.^15-17 Most parents are not at increased risk for psychiatric difficulties after successful MFPR.¹⁶ Prolonged depression is more likely when the entire pregnancy is lost during attempted MFPR.^16,17 Most parents, including those with a total pregnancy loss, are satisfied with their decision.^15-17

Parents who elect selective termination of an anomalous fetus do not usually regret their choice.⁴ However, comfort with a decision does not eliminate their need to mourn for their lost multiple-birth child. The terminated fetus must be accorded suitable respect.^4,18 Grief support and privacy to view or hold the terminated fetus(es) can be offered at the time of delivery.^4,18 Parents may wish to refer to the pregnancy using either the original number or the remaining number of fetuses after selective termination.⁶

FETAL ANOMALIES

An anomalous fetus in a multiple pregnancy poses a difficult dilemma. Couples must choose among total pregnancy termination,^4,18 selective termination, and expectant management.¹⁹ Counseling must address possible prenatal complications, medical implications of the anomaly for the affected child, the family impact of raising a disabled child, and possible effects on healthy multiple siblings.⁴

With expectant management, the child with a lethal anomaly may survive for a prolonged period. Consultation with a neonatologist or a hospice counselor before delivery can help parents to choose a suitable care option for their affected child. With appropriate support, parents can have meaningful weeks or months at home with their multiples together before the death of the anomalous infant.^1,20,21

Some anomalies are unique to monozygotic twins. Organizations dedicated to unique twin disorders can offer peer support, treatment suggestions, and bereavement resources. The twins’ identities as two unique individuals must be affirmed.^5,22 If treatment permitting at least one twin to survive places the other twin at great risk of death, the ethical implications should be thoroughly explored with the parents.²²

DELAYED-INTERVAL DELIVERY

Occasionally, one child is delivered very prematurely, and the pregnancy is continued with the other fetuses. The firstborn may die promptly or after a complicated neonatal course. Prognosis for the remaining fetuses is guarded,²³ with a substantial mortality risk despite clinicians’ best efforts to forestall delivery.

Grief reactions are similar to those seen when pregnancy continues after intrauterine demise of fewer than all fetuses. However, with delayed-interval delivery, mothers immediately confront the physical reality and decisions regarding the remains of a deceased child while still enduring a high-risk pregnancy. They may be frustrated when their medical condition prevents involvement in burial, cremation, or memorial services, and they may fear that their sorrow will provoke labor or complications. Cooperation among clinical, pastoral, and funeral home staff enables hospitalized mothers to see and hold the dead child, participate in final arrangements, and/or plan a hospital chapel service. Embalming permits delay of final disposition if parents wish to see all of the children together after the rest of the babies are born.²¹ Women whose children are delivered at different times may not feel entitled to consider themselves mothers of the full set of multiples because they were not all carried until the same date. A ceremony recognizing all children together may be particularly helpful for both parents.²¹

EXTREME PREMATURITY

When women present with threatened delivery of multiples at the limits of viability, they and their partners must consider many management options, weighing the prognosis for the children’s survival, their expected quality of life, and the burden of caring for several high-needs children.^1,21,23 Multidisciplinary conferences facilitate discussion of these difficult situations.⁵ Careful communication is vital following delivery, as these parents tend to have greater anxiety than do parents of premature singletons.^19,24 Some desire all possible measures to be used to prolong the life of a sole survivor. Others wish to be less aggressive, comforted somewhat by the thought of their multiples being together in death. Caregivers at a tertiary center must be informed when a loss occurs before transfer to their facility, because parents will need support for both bereavement and premature parenting.⁵ Opportunities to have all of the children together in the same location at least once are deeply appreciated.²¹ When survivors are hospitalized for a prolonged period, some parents do not want to discuss the child(ren) who died, whereas others have a deep need to talk about them. An open-ended inquiry about how parents are coping encourages them to raise the concerns that are most important to them.

SUDDEN INFANT DEATH SYNDROME

Loss of a multiple-birth child to sudden infant death syndrome (SIDS) is enormously challenging to parents.²⁵ While acutely mourning, they face immediate decisions regarding the surviving infants’ health. Additional cases of SIDS in co-multiples after one multiple’s SIDS death are rare, however.²⁶ Surviving children need love and attention that the parents may initially feel incapable of providing. Encouraging parents to involve others in caregiving will give them needed time to sort out conflicting feelings.²⁵

Parents may not fully comprehend a discussion about cardiorespiratory monitoring while they are still absorbing the reality of one child’s death.²⁵ Monitoring is recommended for the surviving twin,⁴ although it has not been shown to prevent SIDS.²⁵ Adequate support is needed for parents monitoring two or more children after a co-multiple’s demise from SIDS.^25,27

HIGH-ORDER MULTIPLE GESTATION

Parents of intact sets of high-order multiples are susceptible to psychological risks during and after pregnancy.^8,17 Each additional fetus in the pregnancy increases the range and complexity of loss scenarios. Parents juggling concerns for deceased, dying, critically ill, and healthy children simultaneously will respond to any specific issue differently than will parents who have only a single issue with which to contend.²¹ Couples may express anger about the reproductive technology that led to their exceedingly high-risk gestation with its concomitant painful events and decisions.⁴ Families with two or more survivors may receive little support from others for their loss.⁴ Many relatives ignore bereaved parents’ pleas to refer to their children as quadruplets rather than as triplets after one dies, and it is crucial for professionals to avoid the same error.^3,21 The importance of losses occurring at different stages of pregnancy or infancy, and decisions about how to refer to the living children as a group, can change over time. Regardless of outcome, parents may later question whether they made the right choices for MFPR or life-sustaining treatment. Nonjudgmental support and opportunities to discuss fluctuating concerns and emotions will help these parents to cope.²¹

CONCLUSION

Effective grief management following complicated multiple birth loss requires attention to ethical and psychological factors, parental values, and the needs of the entire family unit.^19,20 Maintaining an overview of the situation and anticipating parents’ needs when they are unable to ask for help lay the best possible foundation for parents to process and heal from the experience, and decrease psychological risks to parents and to any surviving or subsequent children.²¹

Resources and Support Organizations for Specific Complications

Sidelines National Support Network
PO Box 1808, Laguna Beach, CA 92652
Telephone: 949-497-2265; fax: 949-497-5598
Web site: www.sidelines.org
email: sidelines@sidelines.org

Twin to Twin Transfusion Syndrome Foundation National Office
Mary Slaman-Forsythe
411 Longbeach Parkway, Bay Village, OH 44140
Telephone: 440-899-TTTS (8887); fax: 440-366-6148
Web site: www.tttsfoundation.com
email: TTTSFound@aol.com

Twin Hope, Inc
Jill Macgiven
2592 West 14th Street, Cleveland, OH 44113
Telephone: 216-228-TTTS (8887)
Web site: www.twinhope.com
email: twinhope@mail.ohio.net

Monoamniotic Monochorionic Support Group
Web site: www.monoamniotic.org

Conjoined Twins International
Will L. Degeraty
P.O. Box 10895, Prescott, AZ 86304
Telephone: 520-445-2770

National Sudden Infant Death Syndrome Resource Center
2070 Chain Bridge Road, Suite 450, Vienna, VA 22182
Telephone: 703-821-8955; fax: 703-821-2098
Email: sids@circsol.com

Elizabeth A. Pector, MD, is president, Spectrum Family Medicine, and serves as a family physician on the active medical staff of Edward Hospital, Naperville, Ill. Michelle Smith-Levitin, MD, is director, High-Risk Pregnancy Center, Division of Maternal–Fetal Medicine, North Shore University Hospital, North Shore-Long Island Jewish Health System, Manhasset, NY.

REFERENCES

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5. Sweeney MM. The value of a family-centered approach in the NICU and PICU: one family’s perspective. Pediatr Nurs. 1997;23(1):64-66.
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18. Baram DA. Termination of pregnancy for fetal abnormalities. In: Woods JR Jr, Esposito Woods JL, eds. Loss During Pregnancy or in the Newborn Period: Principles of Care with Clinical Cases and Analyses. Pitman, NJ: Jannetti Publications; 1997:307-330.
19. Pector EA, Smith-Levitin M. Grief and psychological issues in multifetal pregnancy loss. Isr J Obstet Gynecol. 2000;11(4):155-166.
20. Bryan EM. The death of a twin. Palliative Med. 1995;9(3):187-192.
21. Multiple Birth Loss and the Hospital Caregiver. Anchorage, Alaska: Center for Loss in Multiple Birth; 1993:1-4.
22. Raffensperger J. A philosophical approach to conjoined twins. Pediatr Surg Int. 1997;12(4):249-255.
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24. Zanardo V, Freato F, Cereda C. Level of anxiety in parents of high-risk premature twins. Acta Genet Med Gemellol (Roma). 1998;47(1):13-18.
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27. Ostfeld B, Carbone T, Kwiatkowski D, et al. Profile of parental stress during cardiorespiratory monitoring of premature twins and singletons. Pediatr Res. 1994;35:26A

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