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2002 Selected Articles

Bereavement in Multiple Birth
Part 1: General Considerations

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

Fetal loss is more common and more complex in a multiple gestation than in a singleton pregnancy. Although general recommendations for managing perinatal bereavement apply equally to losses of singletons and multiples,^1,2 unique complications and counseling needs arise when multiple-birth children die. This article, the first in a two-part series, explores general features of multifetal pregnancy loss. The second article will detail specific circumstances requiring particular sensitivity.

MOURNING CHARACTERISTICS

Parents’ expectations, personal beliefs, and cultural background all influence the mourning process.³ Although some expectant parents may be delighted to learn of their multiple pregnancy, others may be extremely distressed because of the implications for the mother’s and children’s health, family finances, and caregiving burdens.^4,5 Similarly, in some cultures, twins are considered desirable, whereas in others, they are deemed despicable.^3,6 Parents’ attitudes regarding the prospect of multiple birth may then influence how they respond to news of potential or actual loss. Gestational or postnatal age at the time of death and the circumstances of loss also affect the grief process.^3,7,8 Important elements of grief for many bereaved families include loss of the celebrity and challenge of raising the expected number of children,^7,9,10 a history of infertility,³ and prematurity and/or disability of surviving co-multiples.¹¹

Grief intensity, coping strategies, and adjustment are generally similar for mothers and fathers.^8,12 Nevertheless, whereas mothers may be receiving adequate care and attention as they recuperate from delivery, bereaved fathers are sometimes overburdened and overlooked. Not only must they console the mother who has just suffered a loss and who may be seriously ill herself, but they must also deal with their child(ren)’s death and memorial arrangements and, at the same time, try to manage household duties.^11,13

Parents who suffer a total multifetal pregnancy loss may have a more intense and longer-term grief response than do bereaved parents of singletons.^3,11 Severe depression may arise when a multiple gestation resulting from infertility treatment fails to produce any living children.¹¹ When parents lose some, but not all, of their multiples, they may feel that members of their social network and their caregivers underestimate their grief.¹⁰ Well-intentioned friends and relatives may not realize that grief for the loss of one twin is just as intense as grief after a singleton’s death.^7,10,11,14 It is also possible that the burden of caring for surviving children with complex needs may delay or interfere with grieving.^3,10,11 Some parents initially resist bonding to surviving multiples because of the fear of further loss, whereas others become overprotective.⁹ Compared with parents of intact sets of twins, parents of sole surviving twins have a greater risk of depression ⁵ years after the birth.¹⁵

Effects of multiple-birth loss influence families indefinitely. In most cases, it takes 3 to 5 years for acute parental grief to resolve.³ Encounters with intact sets of multiples are frequently painful for several years after the loss.^9,11 Older siblings and surviving multiples, when they get older, also face special challenges in grieving.^16,17

DEATH NOTIFICATION

The manner in which news of a death is discussed affects parental impressions of the situation, bonding with any survivors, and older siblings’ reactions.^9,11 Most parents prefer to be informed together, with a simple, direct statement such as, “I’m so sorry to tell you this, but your child has [children have] died.” Phrases such as vanished, demised, and incompatible with life are confusing.^1,2 Long explanations may not be absorbed or remembered. Bereaved parents can be given information in stages over several sessions with physicians and other health care workers, in response to their questions and in proportion to their perceived ability to handle the information shared.^1,2 Parents sometimes resent or blame surviving co-multiples,^9,10 so careful wording is crucial.² Even with twin-to-twin transfusion syndrome, a surviving twin must not be “blamed” for the death with statements such as, “He starved his twin.”⁹ Sensitive comments appreciated by parents are noted in Table 1, and potentially painful comments are listed in Table 2.

TABLE 1. Helpful Comments for Bereaved Parents I’m so sorry that your babies died. What did you name them? I’m happy that you have [the survivors], but I’m also very sad that your other child[ren] died. It’s not fair that this happened to you. I’m hurting for you and your family. I care for you, and I want to help. How have you been coping with everything. I don’t know what to say.

TABLE 2. Potentially Hurtful Comments for Bereaved Parents As one twin died so early, we can treat this like a normal singleton pregnancy. At least you have one [two, three] left. The fetus will be just a mass of tissue. You won’t want to see it. It’s for the best. They would have been severely disabled. Focus on the living. Your survivors need you. You would have had your hands full. Humans weren’t meant to have litters.

Physicians should be aware that, from the parents’ perspective, the loss of more than one multiple represents the deaths of several unique children,^3,9 and not the death of a “collective baby.”¹¹ Each deceased child’s name, sex, and unique features must be recognized. In a pregnancy that continues after the loss of one or more multiples, parents must be asked directly about how many fetuses they wish to acknowledge. Perceptions may vary, but most parents do not feel that death of a triplet creates a set of twins.^3,11 Practitioners must not ignore the deceased children by limiting discussion to those who survive.^3,9

PRESERVING MEMORIES

After a successful multiple delivery, visualizing all of the babies alive together helps parents to comprehend the reality of their multiples’ birth.¹⁸ When bereaved parents cannot see or hold their children together, confusion arises. Some parents “see” a dead child in the living one,⁹ feel that they had separate dead and living babies instead of a set of twins,¹¹ or think that part of a baby died and part lived.¹ Viewing, holding, and photographing all of the children together—living and dead—can help to prevent such confusion by giving parents and older siblings valuable experiences with the multiples as an intact group.^1,9–11,13 Private time with each deceased child alone is also encouraged, especially when all of the multiples have died.³ Parents may express anxiety about a deceased or anomalous child’s appearance, and need sensitive preparation if death occurs more than 10 days before delivery.^{1,2,7,13,16,19} Some parents prefer not to see or hold children who have died or not to place them near living co-multiples. While respecting parental autonomy, caregivers can explain that these experiences can promote healthy mourning and will not harm surviving infants.

Mothers who have perinatal complications may need to delay viewing.^3,11 A deceased child’s body can be refrigerated in the morgue for a few days or embalmed at a funeral home for a longer time,¹⁶ until the mother is stable enough to view the children. A mother, or living or deceased children, can often be transported to a second hospital caring for other family members to facilitate family time together.^9,11

Thirty-five-mm photos of all babies—alone and together, dressed and undressed—and of parents holding all children alone and together are valued keepsakes.^7,11 If a photo of all multiples together cannot be obtained, photographic laboratories can manipulate digital images to create a group photo (Figure).⁹ Black-and-white photos minimize discoloration in macerated fetuses.⁷ Parents often ask later about photos after initially declining to have them taken. It is therefore recommended that, despite parental refusal, photos be obtained and then stored in a secure location.^2,7,11 Similar mementos for each child, deceased or living, can be given to parents in keepsake boxes. Ultrasonographic photos and videos,⁹ monitor strips with all of the infants’ heartbeats, and footprints of all of the children on the same card commemorate the multiples as a set. Footprints can be obtained even from fetuses terminated for an anomaly.¹⁹

FIGURE. Computer-Enhanced Image

Photos of the deceased child and the living child were combined to create one photo of the set, as both boys had not been photographed together.

For many parents, a memorial ceremony for fetuses or infants who have died promotes healing.^3,13 Sometimes, services for deceased children are combined with baptism or blessing of survivors.^7,9 Parents appreciate written information tailored to their family’s unique circumstances.²⁰ Referral to specialized organizations facilitates peer support and education (Box).

DISPOSITION OPTIONS

In cases in which delivered infants are expected to be nonviable, some parents find it helpful to make plans for disposition in advance.^21,22 They can specify whether they want to see any of the infants at delivery, and in which order they would like to see the children. Parents can also indicate whether they have selected names for the children, or, if they prefer, for example, for quadruplets to be announced as babies A, B, C, and D. Parental preferences for clergy participation, autopsy, and final disposition of the remains can also be detailed. If resuscitation is not attempted for liveborn infants who are judged nonviable, most parents will wish to hold the children while they are dying.^1,11

When multiples die before 20 weeks’ gestation or weigh less than 500 g (including fetus papyraceous), options of public versus private burial, cremation, and hospital disposition must be gently discussed.^13,16 Because some parents are quite distressed to learn that the hospital will incinerate their children’s bodies along with other patients’ pathology specimens, it is important to ascertain their understanding of hospital disposal procedures if they elect this option. Many parents with critically ill surviving infants wish to finalize disposition arrangements immediately. Others delay burial or cremation until survivors’ likely outcome is more definitive.¹³ This permits parents whose children have died at different times to see or hold them together.¹¹

NURSERY ISSUES

When a mother’s condition after delivery prevents her from visiting the neonatal unit, bringing her child(ren)’s isolette(s) to her gives her valuable exposure to babies who might die before her own status stabilizes. If babies are transported to another institution, regular photographs and updates should be provided, with all possible efforts made to promptly reunite mothers with their children.¹¹ Later regrets about not spending more time with children who died are common, even when surviving co-multiples justifiably needed parental attention.⁹ If one child is healthy, and seriously ill co-multiples are in the neonatal intensive care unit (NICU), providing a crib on the unit for the healthy co-multiple to stay during family visits facilitates greater parental involvement with all of the children.¹¹

Parental wishes regarding crib identification labels for surviving multiples in the nursery must be clarified. Some bereaved parents are hurt if “Triplet C” is changed to “Baby Smith,” feeling that their loss and their child’s multiple-birth status have been forgotten.^1,11 Others are distressed by the constant reminder of their loss on a twin, triplet, or quadruplet label.^3,11 Placing survivors’ isolettes at a distance from intact sets of multiples in the nursery or NICU can minimize bereaved parents’ pain at witnessing other couples’ successful multiple births.¹¹

Parents may have difficulty bonding with dying or surviving infants.⁸,10 They may resist becoming attached, or unreasonably delay discharge planning.¹¹ Some may appreciate counseling or psychiatric consultation. Social workers can resolve obstacles concerning transportation, child care, or other practical issues that prevent parents from visiting.^9,11 Hospice or home health care support gives some families meaningful time with their terminally ill child(ren) and siblings at home.⁹

Breast-feeding surviving multiples is emotionally challenging. Nursing promotes bonding, but feeding surviving co-multiples in the same location where their deceased siblings were held may remind mothers of their loss.¹¹ Thus, it is thoughtful to offer a different location when feasible. Stress can lower some mothers’ milk production, but those with overabundant lactation may find meaning in donating milk to other babies.²³ Lactation consultants should be informed about the loss, and can help mothers work through their concerns.

Parents who suffer a multiple birth loss may harbor significant anger,^10,13 which may be directed at caregivers. After a loss, many parents are more fearful that surviving children will die.¹⁰ When surviving co-multiples finally come home, parents must confront the vivid reality of their loss afresh. Parents’ support systems need to be evaluated. Continued regular follow-up by caregivers reduces parents’ isolation and enhances their sense of well-being.¹¹

ADMINISTRATIVE CONCERNS

When some fetuses die during pregnancy, accurate recording of the multiplicity of gestation on survivors’ birth certificates will affirm the reality of the deceased children.²⁴ Parents can be distressed by the differences in certifying fetal death and live birth when their multiples were delivered as a set.¹³ Some states now issue a “certificate of birth resulting in stillbirth,” which may ameliorate some parents’ discomfort. Hospital administrative and billing departments should be notified of a death so that correspondence is not sent in the name(s) of the deceased.² Particular attention to parents’ wishes regarding privacy, anonymity, and publicity may be needed for high-order multiples, conjoined twins, and other unusual scenarios.^4,25

CONCLUSION

When a family’s needs are sensitively managed by medical caregivers following a multifetal pregnancy loss, parents and siblings can minimize regrets over lost opportunities and move more smoothly through the mourning process. Their abundant praise for compassionate medical staff testifies to the importance of psychological support in addition to technical expertise in the care of families experiencing complicated multifetal pregnancies.

A future article will explore dilemmas presented by several specific loss scenarios unique to multiple gestations, including multifetal reduction, selective termination, pregnancy continued after prenatal diagnosis of anomalies in one or more multiples, delayed-interval delivery, extreme prematurity, sudden infant death syndrome, and high-order multiples.

Resources

Multiple-Specific Resources and Support Organizations

Multiplicity: Resources for Loss, Prematurity and Special Needs
www.synspectrum.com/multiplicity.html

Bryan EM, Hallett F. Guidelines for Professionals: Bereavement.
London, England: Multiple Births Foundation; 1997.
Multiple Births Foundation, Level 4 Hammersmith House
Queen Charlotte’s & Chelsea Hospital, DuCane Road
London, England W12 0HS
Telephone (44) 020 383 3519; fax (44) 020 1383 3041
www.multiplebirths.org.uk, mbf@ic.ac.uk

Center for Loss in Multiple Birth, Inc
Jean Kollantai, CLIMB, Inc
P.O. Box 91377, Anchorage AK 99509
(907) 222-5321
www.climb-support.org, climb@pobox.alaska.net

Loss of Multiples Registry
Lynda Haddon, Multiple Births Canada (formerly POMBA)
P.O. Box 234, Gormley, Ontario, L0H 1G0, Canada
(866) 228-8824
www.multiplebirthscanada.org, loss@multiplebirthscanada.org

General Bereavement Support Organizations

SHARE Pregnancy & Infant Loss Support, Inc
Catherine A. Lammert, RN, National SHARE Office
St. Joseph Health Center, 300 First Capitol Drive
St. Charles, MO 63301-2893
(800) 821-6819 or (314) 947-6164
www.nationalshareoffice.org, share@nationalshareoffice.org

RTS Bereavement Services
Fran Rybarik, LaCrosse Lutheran Hospital
1910 South Avenue, LaCrosse, WI 54601
(608) 791-4747
www.gundluth.org/bereave, berservs@gundluth.org

RESOLVE National Infertility Association
1310 Broadway, Somerville, MA 02114
(617) 623-0744
www.resolve.org, resolveinc@aol.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

1. Limbo RK, Wheeler SR. When a Baby Dies: A Handbook for Healing and Helping. LaCrosse, WI: Bereavement Services; 1998.
2. Woods JR Jr. Pregnancy-loss counseling: the challenge to the obstetrician. 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; 1997:71–123.
3. Sainsbury MK. Grief in multifetal death. Acta Genet Med Gemellol (Roma). 1988;37(2):181–185.
4. Bryan E, Denton J, Hallett F. Guidelines for Professionals: Multiple Pregnancy. London, England: Multiple Births Foundation; 1997.
5. McKinney MK, Tuber SB, Downey JI. Multifetal pregnancy reduction: psychodynamic implications. Psychiatry. 1996;59 (4):393–407.
6. Ball HL, Hill CM. Reevaluating twin infanticide. Curr Anthropol. 1996;37(5):856–863.
7. Lewis E, Bryan EM. Management of perinatal loss of a twin. BMJ. 1988; 297(6659):1321–1323.
8. Netzer D, Arad I. Premature singleton versus a twin or triplet infant death: parental adjustment studied through a personal interview. Twin Res. 1999;2(4):258–263.
9. Bryan EM. The death of a twin. Palliat Med. 1995;9(3): 187–192.
10. Cuisinier M, deKleine M, Kollee L, et al. Grief following the loss of a newborn twin compared to a singleton. Acta Paediatr. 1996;85(3):339–343.
11. Multiple Birth Loss and the Hospital Caregiver. Anchorage, AK: Center for Loss in Multiple Birth; 1993:1–4.
12. Harrigan R, Naber MM, Jensen KA, et al. Perinatal grief: response to the loss of an infant. Neonatal Netw. 1993; 12(5):25–31.
13. Bryan E, Hallett F. Guidelines for Professionals: Bereavement. London, England: Multiple Births Foundation; 1997.
14. Wilson AL, Fenton LJ, Stevens DC, Soule DJ. The death of a newborn twin: an analysis of parental bereavement. Pediatrics. 1982;70(4):587–591.
15. Thorpe K, Golding J, MacGillivray I, Greenwood R. Comparison of prevalence of depression in mothers of twins and mothers of singletons. BMJ. 1991;302(6781):875–878.
16. Pector, EA, Smith-Levitin, M. Grief and psychological issues in multifetal pregnancy loss. Isr J Obstet Gynecol. 2000;11 (4):155–166.
17. Pearlman EM, Ganon JA. When a twin dies. In: Pearlman EM, Ganon JA, eds. Raising Twins. New York, NY: HarperCollins; 2000:209–225.
18. Van der Zalm JE. Accommodating a twin pregnancy: maternal processes. Acta Genet Med Gemellol (Roma). 1995;44 (2):117–133.
19. 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.
20. 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.
21. Noble E. Having Twins. Boston, MA: Houghton Mifflin; 1991:307–328, 380–383.
22. O’Leary J, Parker L, Thorwick C. After Loss: Parenting in the Next Pregnancy. Minneapolis, MN: Abbott Northwestern Hospital; 1998:11–12, 84–90.
23. Hanrahan J. Grieving while lactating. Clin Issues Lactation. 1999;4(1).
24. O’Leary JM, Thorwick C. Impact of pregnancy loss on subsequent pregnancy. 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; 1997:431–443.
25. Raffensperger J. A philosophical approach to conjoined twins. Pediatr Surg Int. 1997;12(4):249–255.

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