Thereshouldhavebeen two:Nursingcareof parentsexperiencingtheperinataldeathof a twin

Kristen Swanson-Kauffman, PhD, RNResearch Assistant ProfessorDepartment of Parent and Child NursingUniversity of WashingtonSeattle, Washington

78

WITH EACH PREGNANCY the ques-tion, "Could it be t"v~ns?"receives at

least a moment's attention. Often, an emo-tional entanglement of joy, fear, and excite-ment accompanies the fantansy. Severalprenatal occasions provide the stimulus toconsider the possibility of twins by both theparent and professional: when first listen-ing for fetal heart tones, during the firstultrasound scan, and when assessing amaternal size-to-dates discrepancy. Forsome parents the expectation is wellfounded and the transition to the status of"parents of twins" is realized. For many ofthese parents of twins, however, the antic-ipated outcome of having two children isnever realized. . .

This article examines parents' experi-ence with the loss of one twin during theperinatal period. Particular emphasis willbe placed on the parental dilemma ofsimultaneously grieving the death of onetwin while developing an attachment to the

The author thanks lean Kollantai for her assistance inthe preparation of this manuscript.

1Perinat Neonatal Nurs 1988;2(2):78-86@1988Aspen Publishers.Inc.

survivor. A modei of caring to guide nurs-ing intervention is also proposed.

PERINATAL LOSS OF A TWIN

Early fetal demise

Up to 700/0of twin pregnancies diag-nosed prior to ten weeks' gestation willresult in a singletonbirth.1 The majorityofthe "vanished twins" actually die in earlypregnancy and subsequently sponta-neously abort, undergo resorption, or areretained and birthed as a fetal papyraceous(remains of the dead twin fetus that havebeen flattened by the growing co-twin inutero ).

Prior to the current, near-ubiquitous useof ultrasound, most twin pregnancieswould not even have been realized by themother.2 Historically the spontaneouslyaborted single-twin fetus might have beenviewed as an early miscarriage or passedoff as a "late heavy period" followed by thei'premature birth" of a full-term infanteight months later. Alternatively the spon-taneous abortion of one ~in might havebeen dismissed as unexplained first trimes-ter bleeding in which the supposedly sin-gleton pregnancy continued on uneventful-ly. Conversely, if the nonsurviving twinremained in utero and was delivered atbirth as a fetus papyraceous and if the birthattendants did not alert the mother of thepresence of tissue, the mother would againbe unaware of her twin conception. Lastly,if the fetus underwent resorption, the twinconception would have remained undis-covered. Given the high rate of early fetalloss in twin conceptions, the sense of dis-ruption experienced by parents when diag-nosed with twins, and the grief experi-enced when informed of the loss of one ofthe twins, questions can be raised about therisk of ushering parents through an emo-

There Should Have Been Two 79

tional roller coaster when an early ultra-sound scan is done.

Later fetal death

As Dudley and D'Alton3summarized, theincidence of intrauterine single-fetal deathranges from 0.5% to 6.8% in twin pregnan-cies, with the likelihood of such loss beingthree times higher in monochorionic thandichorionic twins. To add to this tragicevent, the reported incidence of neurologicsequelae for the co-twin survivor rangesfrom 20% to 46%.3 Some of the potentialcauses of intrauterine single-twin fetaldeath include cord accidents, twin-to-twintransfusion syndrome, placental abruption,and umbilical stricture.3.4

Stillbirth and neonatal death

The risk of perinatal loss in a twin gesta-tion is three times that in a singleton gesta-tion.5In Ruttgers'611-year study of 228twinpregnancies, there were 38. perinataldeaths of at least one twin. Of the 38deaths,30 were the result of both twins dying.Mortality was significantly correlated withprematurity and sex of the infant. Low birthweight and being a male were both riskfactors for twin perinatal death. In thestudy by Keith and colleagues5 of 588 twinpregnancies, 86 of the infants died in theperinatal period, with the highest inci-dence of loss being associated with lowbirth weight. The mortality rate for secondtwins was higher (8.5/100) than for firsttwins (6.1/100).Maternal risk factors of ageand parity were also identified. The lossrate was highest among women aged 15 to20years (21.2/100)and lowest in women intheir early 30s.After the age of early 30stherate of twin loss rose again. Parity riskassumed a similar pattern: the rate of twinloss for nulliparous women was highest

80 THE JOURNAL OF PERINATAL AND NEONATAL NURSING/OCTOBER 1988

(13.2/100J and lowest for a parity of three tofour (4.3/100J. For a parity of five or greaterthe loss rate rose again (6.8/100J.

THE HUMAN E.."{PERIENCE

Parental response to the prenatal news oftwins is often ambivalent. For many cou-ples it takes considerable "getting used tothe idea:' A new world with some mysteryand the special status of parenting twinsopens up for the parents. Both the motherand father begin to imagine how they willparent two children of the same age at thesame time. Breastfeeding. playtime, and thefantasies associated vyith the anticipatedjoys of twins begin to preoccupy the par-ents' thoughts. As one mother explainedI can never describehow wonderful it felt toknow I was carryingtwins.Just the idea madeother people smilewith anticipation.Despitearough time physically,I felt so special andlookedforwardto the joysand the tremendousresponsibility the coming days would bring.7

In time. the thought of having twins.although still somewhat scary, becomesexciting. desirable. and a source of pride.Soon friends and relatives get caught up inthe momentum. Plans are made. two ofeverything is purchased, and some parentscontact the local Parents of Twins Club. Asthe mother's abdomen grows larger and thebirth draws near, the family prepares towelcome its two new members.

Whether the news of the death of anexpected twin is given prenatally. at birth.or shortly after birth. it is received as aphysical blow to most parents. The follow-ing account describes one mother's feel-ings:

At 30weeks,during a routine sonogram,mydoctordroveto the hospitalto see for himselfifthe radiologistwas correct."Rightie"had died.Wedidn't knowwhy-we didn't knowwhen.

We stared in disbelief at the doctor when heexplained that I would have to carry a deadchild for several more weeks. This plan wouldgive "Leftie" a better chance at survival. Theidea seemed almost cruel to me. How could Istand the waiting and wondering? My tiny sonwho had died was trapped inside of me, possiblypoisoning his twin brother and me with hisslowly decomposing body.7

Immediately set into motion is a confus-ing desire to fill an empty space, to com-plete a missing whole, or to finish anincomplete feeling. This feeling may andoften does recur throughout the parents'lives. Although the intensity of the sense ofincompleteness may diminish over time. itis unlikely that it will ever disappear.

In the study of Wilson et a1.8which com-pared parents who lost a singleton to still-birth with parents who lost a twin to still-birth. no significant difference was foundbetween the groups in amount of depres-sion at 15 months postbirth. Neither thepresence of a surviving twin nor the rapid.subsequent birth of a replacement chil!iseems to make up for the death of theco-twin. The surviving twin will always bea single twin. Parents will continue to bethe "parents of twins, one of whom died atbirth:'

Parents get through the loss of a twin;they do not get over it. The presence of theliving co-twin is a flesh and blood reminderof the dead child. The resurgence of grief atanniversaries and special occasions is acommon aspect of grieving. With the loss ofa twin. however, the actual number of"occasions" are increased exponentially by

The surviving twin is ironically thenever-ending reminder of what couldhave been.

witnessing growth markers in the survivingtwin. Some of those markers include firsttime at the breast. first day home from thehospital, first smile. first tooth. first step.first birthday. and so on for the remainderof the surviving twin's life. The survivingtwin is ironically the never-ending re-minder of what could have been.

When one twin dies perinatally. mothersand fathers have a very confusing. ambiva-lent induction into new parenthood. Con-gratulations and condolences. birth anddeath announcements, baptismal gownsand caskets are all a part of the first fewpostpartum weeks. While trying to attach tothe surviving twin. parents are also experi-encing the need to grieve the dead twin. Asone parent states:

Brian came home two weeks later with whatwas to become a four-month case of colic. Wewere both exhausted and had no time to finishour grieving. In temperament Brian was a chal-lenge until he was about a year old. All thefeeling I thought had been resolved resur-faced.. . . My concern is raising Brian in a waythat we can acknowledge our sadness in losingThomas. without forcing Brian to live in theshadow of his lost twin.'

For many parents. the real, immediateneeds of the live infant become an easyway to avert the painful energy necessaryfor grieving. This tendency to turn awayfrom death and toward life is often encour-aged by well-meaning friends and family.Unfortunately grieving, an essential part ofbeing. if not given its full attention. tends tolinger right beneath the surface. Marris9refers to loss as a disruption in the meaningthat one has built up around an event.Unless parents who lose a twin perina tallytend to that disrupted meaning and struggleto build a new acceptable meaning, theirlives may become stuck in the disrupted,confusing feelings of early parenthood.

Tbere Should Have Been Two 81

The "replacement child" phenomenonhas been described by Poznanski.10 Itinvolves the rapid subsequent conceptionand birth of a child to replace the onepreviously lost through stillbirth or neo-natal death. The replacement child, like thesurviving co-twin. is born into a time ofconfusion and fear. Parents. in their effortsto get past the painful loss of one child,often remain blind to the burdens theyplace on the subsequent child or survivingco-twin. Parents who have not addressedtheir grief and who focus only on what theyhave left are all too often cheated out of theopportunity to experience a full nurturingrelationship with the surviving child. Ifparents have not given totally into theirbereavement needs, the much-wanted. too-soon-conceived "replacement" child or thesurviving co-twin may ironically becomethe focus of the parents' rage, depression.and fears. These feelings may be expressedthrough such maladaptive parenting modesas overprotection, abuse, or emotionalabandonment.1o.1t .

A decision of particular challenge to par-ents of twins. one of whom died at birth, iswhether or not to acknowledge the surviv-ing twin as a twin. In western society twinsand parents of twins enjoy a somewhatspecial status. As Cassill12describes, therelationship between twins is a specialbond that is believed to occur on a psychicas well as physical level. When one twindies in the perinatal period, little is under-stood about how much, if any, imprint thatloss has on the psyche of the co-twin survi-vor. Guidelines are unavailable for deter-mining how much twin emphasis is toomuch, when the attention to the lost twinborders on being morbid, or when the sur-viving twin loses the message that "you arespecial" and instead gets the message that"you are not enough,"

At present there are few resources or

82 THE JOURNALOF PERINATALAND NEONATAL NURSING/OCTOBER 1988

support groups that parents can turn to forassistance with their decisions. A notableexception to this is a recently publishednetworking newsletter for parents whohave experienced the perinatal death of atwin. The newsletter, published by JeanKollantai and the Anchorage Parents ofTwins and Multiples Club, is entitled OurNewsletter. In their first newsletter, Kol-lantai wrote the following:

Though ~e .are .scattered all over the countryand are in many circumstances, we all knowwhat it is to suddenly go from being proudlypregnant with two babies-to having a babywho died and a baby who lived. . . and raisingour surviving baby in the midst of grief for ourbaby who died, and for our twins. . . . And all toooften with people acting like the baby who dieddidn't exist or wasn't important. and telling ushow lucky we are to have one baby... .Thisnewsletter is one way of sharing with each otherand reaching out to others who are out therefeeling alone.13

NURSING CARE OF PARENTSEXPERIENCING PERINATAL LOSS OFA TWIN

Nurses who practice in perinatal settingsare in a key position for humanizing par-ents' experience with the loss of a twin.Whether the setting is an ambulatory out-patient clinic. an in-hospital birthing cen-ter. or a neonatal intensive care unit(NICU), the nurse should focus on the par-ents' response to their simultaneous experi-ence with life (expectancy. birth. andattachment to a live twin) and death (fetaldemise. intrauterine death. stillbirth. orneonatal death). Whatever the mode oftwin loss, the caregiver must ask: What isthe meaning of this event to these parents atthis point in time?

A potential model to guide perinatal

practice in the event of twin loss is thecaring model. which is based on a study ofwomen who experienced miscarriages.This model was further refined through asubsequent study of caregivers in the neo-natal intensive care unit,lus

The caring model consists of five catego-ries: (1) knowing, (2) being with, (3) doingfor. (4)enabling. and (5)maintaining belief.Nursing practice in this model is focusedon the parents' reality.

The first category, knowing, is definedas, striving to understand the event as it has

.meaning in the life of the parents. Caregiv-ers who practice from a stance of knowingare perceived as sensitive, knowledgeable,and appropriate. When practice is notbased on knowing, caregivers often appeardistant, abrupt, and mechanical. Knowingthe meaning that the loss of a twin has in aparent's life can be enhanced by:

. discarding any personally held as-sumptions about the loss of a twin (ie.what should be. what is normal);.remaining aware that meanings thatpeople attribute to birth and death arehighly individualized;

. using all senses to thoroughly assesswhere each parent is with their experi-ence;

. using broad opening statements andquestions when approaching parents(How are you doing now?; How has allof this been for you?);

· recognizing parents' postpartum needto focus on the stillborn or dying infanteven if it appears to be at the expenseof the living infant (this may be theparents only chance to care for theirdying or dead infant; the survivor willhave a lifetime of attention);

· including both parents in the plan ofcare, fathers are often expected to actresponsibly (ie, funeral arrangements)

- - . _.. -_0-.__-

at a time when they too have lost achild;

· including siblings and grandparents incaregivers' attempts to understand andbe sensitive; and

· avoiding platitudes and trite condo-lences.

The next caring category, being with. isdefined as, being emotionally present to theparents. Being with takes a personal com-mitment on the part of the nurse to bewilling to enter into the pain and joy ofanother human being. The sharing ofanother's emotional experience must, how-ever, be done with a sense of responsibilitytoward the self and toward the other. Anessential part of nursing others throughdifficult life events is knowing when it istime to withdraw and practice self-care.Such self-monitoring enhances the nurse'scapacity to be genuinely with a client whois experiencing a painful event such as theloss of a twin. The ambivalence and emo-tional turmoil engendered by the deat~ ofone" twin and the birth of the other areparticularly challenging experiences forboth parents and nurses to face. The ten-dency to want to flee from death and turntoward life must be curtailed. As everyperinatal nurse knows, when a reproduc-tive casualty occurs, remaining physicallyand emotionally present with the parentstakes a tremendous amount of personalenergy. Perinatal care providers are proba-bly among the very few who have wit-nessed the prenatal or postnatal existence

An essential part of nursing othersthrough difficult life events is knowingwhen it is time to withdraw and to

practice self-care.

There Should Have Been Two 83

of the dead twin. This validation of theparents' perception makes the perinatalcaregiver a very special part of their lives.The personal energy expended in beingwith is a nursing intervention that parentsalways remember.

The third caring category, doing for.involves doing for the parents as theywould do for themselves if it were possible.Doing for involves providing physical carethat is anticipatory. competent. and com-forting. This is a fundamental nursingaction. Doing for is based on clinicalknowledge and human compassion (know-ing and being with).

When a perinatal loss of a twin occurs,few parents have a repertoire of actions orwords available to them. since they arenovices at perinatal loss. Relatively speak-ing the nurse is an expert by virtue ofprevious experience and learning. Usingthis expertise the nurse does for the parentswhat they would do for themselves if theyhad planned on the simultaneous birth anddeath. Nursing actions should include thefollowing:

· providing parents opportunities forprivacy;

. giving a verbal or nonverbal messagethat the nurse is always available (anonverbal message of the nurse's will-ingness to do for is to go ahead and"just do" [ie, find parents chairs by theisolette, get the mother tea or ice water.hand a parent the call bell before leav-ing the room, etc]);·handling the dead infant with respect.and compassion (the nurse shouldcarry the infant close to his or her ownbody as he or she hands the parentstheir infant); and

· anticipating a parent's needs before heor she even has to ask (ie, havingKleenex available everywhere, offer-

84 THE JOURNALOF PERINATALAND NEONATAL NURSING/OCTOBER 1988

ing to assist the mother to the nursery,or positioning the infant in the parent'sarms so that an en face position ispossible). When doing for is done well,the dignity of the other human being ismaintained or restored.

The fourth caring category, enabling, ismost applicable to the loss of a twin. En-abling means facilitating the parents' pas-sage through life transitions and unfamiliarevents. The events of birth and death arelife's two greatest transitions. When theyoccur simultaneously, they create an unfa-miliar situation. Nursing care that is en-abling must give attention to both theattachment and grieving needs of parents.The following nursing actions are sug-gested to enable parents' attaching to andgrieving for the dead or dying twin:

. Recognize that parents need to havethe life of the dead twin acknowl-edged. Attachment is a lifelong processthat begins long before birth. The twinlost perinatally was at one time;prena-tally or postnatally, a very significantvital being in his or her parents' lives.

· Help to make memories of the twin'sbrief life (ie, take footprints and photo-graphs; if they are available, give par-ents ultrasound photographs or vid-eotapes of the twins together; saveidentification bracelets and swaddlingblankets; and suggest that parentsbring in clothes for the infant).

· Acknowledge that the mother did con-ceive, carry, and give birth to the deadtwin.

· Encourage parents to name the child.A name is the birthright of every per-son, and having a name provides thedead twin with a permanent, distinctidentity.·Acknowledge that the parents are par-ents of twins.

. Encourage parents to seriously con-sider a funeral or some meaningfulceremony to say goodbye to the deadtwin.

. Give parents books on perinatal loss,and for future reference tell themwhere they may purchase bereave-ment books in the community.

. Assist parents in contacting other par-ents who have experienced the sameor similar losses (ie, support groupssuch as Compassionate Friends); orassist parents to connect with the OurNewsletter network by writing to MrsJean Kollantai, PO Box 1064, Palmer,Alaska 99645.

The final caring category, maintainingbelief, is defined as sustaining faith in theparents' capacity to get through an event ortransition and face a future of fulfillment.This category is particularly salient withrespect to parents' needs to attach to andfoster the growth of the surviving co-twin.Parents often feel as if there is no light atthe end of the tunnel; consequently, theyneed those around them to believe in theirability to get through. Parents need tobelieve that one day meaning will berestored in their lives. The key point isassisting parents to see that things willnever again be as they were but that a lifewith new meaning and fulfillment is possi-ble. Parents need to reach a point of peacein their own time. The nurse's job is not tojudge but to allow parents to be where theyare and, whenever possible, to assist themto take control and make decisions abouthow to face a future without one twin.

Attaching to and nurturing the survivingco-twin will often not be an easy experi-ence. Parents will always be faced with thechallenge of enjoying the surviving co-twinas the individual he or she is. At timesparents may feel resentful that this twin

lived and the other did not. Parents maycompare this child to what might havebeen. Furthermore, parents will oftenexperience the sense that this is only halfthe pleasure to which they are entitled.These are common responses. Parents whohave lost a twin should be encouraged toexpress these feelings and should be fore-warned that such feelings may occur. Par-ents must be assured that it is normal tohave occasions on which they may beacutely aware of their loss (ie, the twins'birthdays). Anticipatory guidance consistsof helping parents to be aware of and planfor such occasions.

A key aspect of maintaining belief inparents who have lost a twin perinatally isto accept that parents are doing the bestparenting job they can, given the resources

There Should Have Been Two 85

available to them. The nurse must be one ofthe potenHal resources whom parents canturn to as they solve such problems aswhether or not to raise the surviving twin asa twin; how to inform the surviving twin ofhis or her co-twin's existence; or how tohandle the unsolicited advice of others asto "what is the right thing to do for thischild." Currently there are minimal, if any,guidelines as to how to raise a child whosetwin has died at birth.. ..

For nurses the challenge is to facilitatethe parents in their ability to grieve for theloss of one twin while developing a rela-tionship with the surviving twin. This goalof clinical practice requires further re-search to guide nursing interventions.

I do have good daysI do smile and laughI have learned a lotThrough tears I can praise God the most

highBut it still hurts deep inside

To my daughter

I had to carry you for another two monthsIt's not fair I yenedthe Dr. just stared,What could he say,No one seemed to care.

Your twin is with mesometimes I wonderDoes she hurt as much as I do?Her eyes are so lovingWould you have been the same?

I ten myself not to think this wayIt just wasn't meant to be.But it wasYou were inside of meTwice I saw you alive.

Why did you have to die.You ruined an my hopes and dreams.

And nowwhen I am an aloneAn I do is cry.

Some people try to ten methat two babies wouldhave been too hard to handleBUT I COULD HAVE MANAGED

A friend told me oncethat God knew I couldn'thandle twins.Youmean to sayI can handle this better

Reprinted with permission from Luce L: To my daughter. Our News/ell 1987:1:2-3.

86 THE JOURNAL OF PERINATAL AND NEONATAL NURSING/OCTOBER 1988

REFERENCES

1. Levi S: Ultrasonic assessment of the highrate of human multiple pregnancy in thefirsttrimester.T Clin Ultrasound 1976;4:3.

2. Lewis E: Stillbirth: Psychological conse-quences and strategies of management. inMilunsky A. Friedman E. Gluck L (eds):Advances in Perinatal Medicine. vol. 3.New York. Plenum. 1983.pp 205-245.

3. Dudley DKL. D'Alton ME: Single fetaldeath in twin gestation. Semin Perinat1986;10:65-72. .

4. Kiley KC.Perkins CS.Penney LL:Umbilicalcord stricture associated with intrauterinefetal demise. TReprod Med 1986;31:154-156. .

5. Keith L. Ellis R. Berger GS, et al: The North-western University multihospital twinstudy. Am TObstet Gynecol 1980;138:781-787.

6. Ruttgers WG: Twin pregnancies: An 11 yearreview. Acta Genet Med Gemellol1985;34:49-58.

7. Ward S: Untitled. Our Newslett 1987;1:1-2.8. Wilson AL. Fenton LJ. Stevens DC. et al:

The death of a newborn twin: An analysis ofparental bereavement. Pediatrics1982;70:587-591.

9. Marris P: Loss and Change. New York.Pantheon Books. 1974.

10. Poznanski EO: The "replacement child": Asaga of unresolved parental grief. BehavPediatr 1972;81:1190-1193.

11. Woodward J: The bereaved twin. Presentedat the Fifth International Congress on TwinStudies. Amsterdam, The Netherlands.Sept. 15-19. 1986.

12. Cassill K: Twins: Nature's Amazing Mys-tery. New York. Antheum, 1985.

. 13. Kollantai J:Gettingorganized. Our Newslett1987;1:6-7.

14. Swanson-Kauffman KM: Empirical devel-opment and refinement of a model of car-ing, abstracted. Gommun Nurs Res 1988;21:80.

15. Swanson-Kauffman KM: Garing in theinstance of unexpected early pregnancyloss. Top GIin Nurs 1986;8:37-46.