Maternal Decision to Terminate Pregnancy After Diagnosis of Down Syndrome

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BSTETRICS

aternal decision to terminate pregnancy after a diagnosis ofown syndrome

arijke J. Korenromp, PhD; Godelieve C. M. L. Page-Christiaens, MD, PhD; Jan van den Bout, PhD; Eduard J. H. Mulder, PhD;erard H. A. Visser, MD, PhD

BJECTIVE: This study explores decisional processes regarding ter-ination of pregnancy because of Down syndrome and aims to identify

ossibilities for improving counseling.

TUDY DESIGN: Seventy-one women completed questionnaires 4onths after termination of pregnancy for Down syndrome, includingotivations for the decision, reasons for doubt, perceived influence

nd/or pressure at decision-making, and satisfaction with the receivedealth care.

ESULTS: Child-related motivations to the termination were the most

anomalies incompatiboi: 10.1016/j.ajog.2006.09.013

elf-interest. Twenty-one percent of women reported much doubt. Per-eived influence of the medical staff was substantial, but most womenelt that they had not been put under pressure. Satisfaction with thearegivers was high.

ONCLUSION: Women acknowledge that self-interested motives playn important role. Medical caregivers are among the most importantersons for women who decide to terminate pregnancy because ofown syndrome.

ey words: decision-making, termination of pregnancy, fetal
requently mentioned, but almost all women indicated also motives of abnormality, Down syndrome
ite this article as: Korenromp MJ, Page-Christiaens GCML, van den Bout J, Mulder EJH, Visser GHA. Maternal decision to terminate pregnancy in case ofown syndrome. Am J Obstet Gynecol 2007;196:149.e1-149.e11.

mproved screening techniques andstrategies for identifying fetal anoma-

ies have led to a more widespread use ofown syndrome (DS) screening and di-

gnosis, and to an increased number oferminations of pregnancy (TOP) forown syndrome.1-3 It has been shown

hat, after a diagnosis of DS, 85-95% of

the women decide to terminate pregnan-cy.3-6 Until recently, little was knownabout the process of parental decision-making, and available data are either ca-suistic or based on small numbers.4-7 In2005, Skotko published the results of apostal questionnaire study in 141 moth-ers who continued their pregnancy afterprenatal diagnosis of DS before 24 weeksof gestation.8 The aim of that study wasto describe the counseling process and toidentify points for improvement. It wassuggested that similar data on womenwho decided to terminate pregnancy be-cause of DS would be a welcome addi-tion to the literature.9 We conductedsuch a study in 71 women, to get insightinto psychological, social, and moral as-pects of this decision and to suggest pos-sibilities for improving health care andcounseling.

MATERIALS AND METHODSThe study is part of a longitudinal studyin 217 women who had their pregnancyterminated for various fetal anomalies.The current study focuses on 71 womenwho terminated their pregnancy becausethe fetus had DS without anatomic

been ascertained. The latter was judgedimportant as decisions to terminatepregnancy may be different in lethal fetalconditions. Compatibility with extra-uterine survival was assessed by the treat-ing physician. Women were recruitedprospectively, from January 1999 to Oc-tober 2002 just before or during hospitaladmission for termination of the preg-nancy. Eight Dutch hospitals partici-pated and it was always the attendingphysician who explained the study andrequested participation. The ethics com-mittees of all participating hospitals hadapproved the study design.

Four months after termination, thewomen filled out extensive standardizedquestionnaires, that had been designedwith the help of responses given to openended questions in a previous study in 40couples10 and were tested in a pilotgroup thereafter. The questionnaire isfull text accessible online.

Variables studied were sociodemo-graphic and medical characteristics, mo-tivations for the decision to terminate,possible reasons for doubt during the de-cision period, and levels of perceived in-fluence and pressure of the social circle

rom the Department of Perinatology andynecology, University Medical Center

Drs Korenromp, Page-Christiaens, Mulder,nd Visser), and the Department of Clinicalnd Health Psychology, Utrecht UniversityDr van den Bout), Utrecht, theetherlands.

eceived March 5, 2006; revised July 14,006; accepted Sept. 18, 2006.

eprints: M.J. Korenromp, Department oferinatology and Gynecology, Universityedical Center (KE 04123.1), Post Box5090, 3508 AB, Utrecht, The [email protected].

rants for this study were provided by theetherlands Organization for Health, Researchnd Development (ZONMw) and theetherlands Foundation for Mental Health

NFGV).

002-9378/$32.002007 Mosby, Inc. All rights reserved.

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Data combined for all maternal ages (�36 and �36 yr).

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149.e2 American Journal of Obstetrics & Gynecology FEBRUARY 2007

ssessed satisfaction with the medicalupport before, during and after the pro-edure, and with the information given.inally, we investigated possible feelingsf regret on the decision and intentionsor future pregnancies. The question-aires included categorical measuresyes/no and 5-point scales) and contin-ous variables. For the 5-point scales,anging from 1 (very much) to 5 (not atll), the answers to possibilities 1 and 2very much and considerable) were con-idered a positive answer and then ex-ressed as a percentage.SPSS for Windows (version 10.1, SPSS

nc, Chicago, IL) was used for data man-gement and statistical analysis. Resultsere summarized with the use of stan-ard descriptive statistics. Groups wereompared using the �2 test or Fisher ex-ct test, as appropriate.

ESULTS

f 104 women who had terminated theirregnancy because of DS, 80 womengreed to participate (77%). Nineomen were excluded because of lethal-

ty or likely lethality (4 and 5 cases, re-pectively) caused by additional fetalnomalies. The results are thereforeased on data of 71 women. The re-ponse rate to all questions of the ques-ionnaire ranged between 95% and00%. Sociodemographic and obstetricharacteristics of the participants areiven in Table 1. All partners were malend two women were single. The studyroup was highly educated and at rela-ively advanced age. The latter is due tohe policy in the Netherlands at the timef this study: serum or ultrasoundcreening for DS was not routinely of-ered to pregnant women and maternalge � 36 years was therefore the mainndication for invasive prenatal diagno-is. The distribution of 76% induced la-or, versus 21% dilatation and evacua-ion is due to the fact that terminationseyond 14 weeks of gestation were usu-lly done by induction of labor. All butwo of the respondents described theirregnancy as a formerly wanted, 77%

rom the beginning and 20% accepted

TABLE 1Obstetric and sociodemographic characteristics of study participantsCharacteristic Value

Sample size, no. 71..............................................................................................................................................................................................................................................

Age at TOP, years.....................................................................................................................................................................................................................................

Mean � SD 37.9 � 3.0.....................................................................................................................................................................................................................................

Range 30-44..............................................................................................................................................................................................................................................

Education, %.....................................................................................................................................................................................................................................

Primary school, high school education 14.3.....................................................................................................................................................................................................................................

Secondary school education 38.6.....................................................................................................................................................................................................................................

College or academic education 47.1..............................................................................................................................................................................................................................................

Religion, %.....................................................................................................................................................................................................................................

Religious, but of no specific church 10.....................................................................................................................................................................................................................................

Dutch Reformed 9.....................................................................................................................................................................................................................................

Protestant* 4.....................................................................................................................................................................................................................................

Roman Catholic 27.....................................................................................................................................................................................................................................

Islamic 3.....................................................................................................................................................................................................................................

Jewish 0.....................................................................................................................................................................................................................................

Other 3.....................................................................................................................................................................................................................................

Not religious 44..............................................................................................................................................................................................................................................

Religion influences important decisions,† % 49..............................................................................................................................................................................................................................................

Gestational age, weeks.....................................................................................................................................................................................................................................

Mean � SD 17.9 � 3.2.....................................................................................................................................................................................................................................

Range 12-24..............................................................................................................................................................................................................................................

Reason for prenatal diagnostic test (%).....................................................................................................................................................................................................................................

Maternal age � 36 yr 77.5.....................................................................................................................................................................................................................................

Genetic 5.6.....................................................................................................................................................................................................................................

Routine screening test/biochemical/ultrasound 16.9..............................................................................................................................................................................................................................................

Risk assessing tests,‡ %.....................................................................................................................................................................................................................................

Nuchal translucency measurement 27.....................................................................................................................................................................................................................................

Serum screening 14.....................................................................................................................................................................................................................................

Fetal abnormality scan 10..............................................................................................................................................................................................................................................

Method of diagnosis, %.....................................................................................................................................................................................................................................

Chorionic villus sampling 36.....................................................................................................................................................................................................................................

Amniocentesis 64..............................................................................................................................................................................................................................................

Method of termination, %.....................................................................................................................................................................................................................................

Dilatation and evacuation 21.1.....................................................................................................................................................................................................................................

Induction of labor 76.1.....................................................................................................................................................................................................................................

Selective reduction 2.8..............................................................................................................................................................................................................................................

Children at TOP, %.....................................................................................................................................................................................................................................

Yes 75.....................................................................................................................................................................................................................................

1 child 51.....................................................................................................................................................................................................................................

2 children 13.....................................................................................................................................................................................................................................

3 children 11..............................................................................................................................................................................................................................................

TOP, termination of pregnancy.

* Protestant other than Dutch Reformed.† Data combined for all positive responses (sometimes, frequently, or always).‡

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Table 2 addresses motivations to ter-inate pregnancy. Women indicated tohat extent various motivations hadlayed a role in their decision towards

TABLE 2Motivations for termination of pregMotivation

Related to the infant..........................................................................................................

I believed the child would never be able..........................................................................................................

I considered the abnormality too severe..........................................................................................................

I considered the burden for the child itse..........................................................................................................

I worried about the care of the child afte..........................................................................................................

I considered the uncertainty about the co..........................................................................................................

I thought that respect for disabled childre...................................................................................................................

Related to the respondent or family..........................................................................................................

I considered the burden too heavy for my..........................................................................................................


I did not want a disabled child..........................................................................................................

I thought I would become unhappy at ha..........................................................................................................


I was afraid of regretting it afterwards if..........................................................................................................

I thought it would obstruct my career too..........................................................................................................

I would feel inferior as a person for havin..........................................................................................................

I acquiesced in the wish of my partner to..........................................................................................................

I considered the financial burden too high..........................................................................................................

I was afraid to be blamed for continuing...................................................................................................................

Values are the percentages of women (N � 71) who indicateapplicable to their decision. More than one answer was poss

TABLE 3Reasons for doubt at the decisionof Down syndromeReason for doubt

My reason was in conflict with my feelings...................................................................................................................

I had the feeling of killing a child...................................................................................................................

My partner and I disagreed...................................................................................................................

The severity of the abnormality was uncertai...................................................................................................................

The consequences were incalculable for me...................................................................................................................

I felt caught off guard...................................................................................................................

It conflicted with my religion...................................................................................................................

My knowledge of the abnormality was insuffi...................................................................................................................

I was afraid of the procedure/complications o...................................................................................................................

I had doubt about the diagnosis...................................................................................................................

Values are the percentage agreeing with a given statement, o
“very much” or “considerable” doubt about the decision. More th
ermination. In the questionnaire, theuestions referring to the various moti-ations were listed randomly. After-ards, we grouped them into two cate-

ncy in case of Down syndrome%

..................................................................................................................

unction independently 92..................................................................................................................

90..................................................................................................................

o heavy 83..................................................................................................................

y/our death 82..................................................................................................................

quences of the abnormality too high 78..................................................................................................................

our society is too low 45..................................................................................................................

..................................................................................................................

her child(ren) 73..................................................................................................................

f 64..................................................................................................................

63..................................................................................................................

this child 61..................................................................................................................

lationship 55..................................................................................................................

d this child 45..................................................................................................................

ch 23..................................................................................................................

disabled child (low self esteem) 11..................................................................................................................

rminate the pregnancy 11..................................................................................................................

6..................................................................................................................

pregnancy of a disabled child 6..................................................................................................................

t the given motive was “very much” or “to some extent”

terminate the pregnancy in case

%

49..................................................................................................................

43..................................................................................................................

38..................................................................................................................

14..................................................................................................................

14..................................................................................................................

13..................................................................................................................

7..................................................................................................................

nt 6..................................................................................................................

e termination 6..................................................................................................................

3..................................................................................................................

those women (eg, 35 of 71 women/49%) who indicated

fan one answer was possible.


ories: motivations relating to thenborn child’s interest and motivationselating to the woman’s own interest, theelationship with her partner, or the in-erest of other children. Child related

otivations scored highest: each child-otivation had 45-92% of women in

greement. All women agreed with ateast one child-related motivation. Con-ern for the welfare of the other childrenn the family was named by 73% of re-pondents. Statements related to con-ern for self or for the partner were rec-gnized as applicable by 6-64% ofomen, issues about burden scoringighest, issues about finances or societallame scoring lowest. All but one of theomen had filled in at least one self- or

amily-related motivation.Levels of doubt during the decision

rocess to terminate or to continue preg-ancy were also assessed with a 5-pointcale. Thirty-five percent of the respond-ng women have had no doubt at all in

aking the decision to terminate, 44%ndicated to have experienced some levelf doubt, and 21% reported high levels ofoubt (very much or considerable). The

atter group had a more advanced gesta-ional age (P � .05) and showed moreeelings of regret (P � .05) four monthsfter TOP than women with no doubt atll. In Table 3, the various reasons forhese feelings of doubt are described,isted in order of frequency. The mostrequent reasons were conflict betweeneason and emotion, guilt about endingheir child’s life, and disagreement withhe partner. Four women (6%) indicatedaving current feelings of regret abouthe termination; 3 of them experiencedhis only occasionally, and 1 strongly re-retted her decision.Perceived influences from the various

ontacts during the decisional processre shown in Table 4. The partner, obste-rician, family or friends, and geneticistere most frequently the ones contacted.he perceived influence during the pe-

iod of decision-making was highest forhe partner (74%) and ranged between8 and 45% (from low to high) for pri-ary health care providers, medical spe-

ialists and social workers, family/

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Separately we asked the womenhether they had perceived pressureuring the decision process. Altogether 9f the 71 responders (13%) felt they hadxperienced some level of pressure. Theerceived pressure had its origin in ‘val-es of society’ (n � 6), religious societyn � 3), family or friends (n � 2), andedical staff (n � 1) (more than one an-

wer was possible). Furthermore, thirtyercent of all women indicated that theyad had to defend their decision to otherersons.Table 5 shows the percentage ofomen who had contacted variousroups of health care providers before,uring, and in the months after TOP,nd in case of contact, the proportion of

TABLE 4Perceived influences from externatermination of pregnancy in case

External contact

Partner...................................................................................................................

Obstetrician...................................................................................................................

Family/friends...................................................................................................................

Geneticist...................................................................................................................

Social worker...................................................................................................................

Family doctor...................................................................................................................

Midwife...................................................................................................................

Other persons with comparable experience...................................................................................................................

Religious counselor...................................................................................................................

Values are the percentage of women (N � 71) who had contain case of contact, the percentage who judged the contact as

TABLE 5Satisfaction with the support of cafour months after TOPCaregiver Contact ma

Obstetrician 99...................................................................................................................

Nursing staff 97...................................................................................................................

Family doctor 80...................................................................................................................

Geneticist 68...................................................................................................................

Midwife 62...................................................................................................................

Social worker 59...................................................................................................................

Religious counselor 28...................................................................................................................

Values are the percentage of women (N � 71) who had con
case of contact, the percentage who evaluated the quality of this
49.e4 American Journal of Obstetrics & Gynecol

omen who evaluated the quality of thisontact as ‘very much’ or ‘considerably’atisfying. Obstetricians, geneticists,ursing staff, and social workers received

he highest levels of satisfaction. Addi-ionally, women’s satisfaction with theind of information given in the succes-ive stages of the process was assessed.he information given about the proce-ure of prenatal testing was felt as satis-

ying by 91% of responders, about theiagnosis of DS by 89%, and about therocedure of the TOP by 83%. The in-

ormation regarding the period afterOP scored lowest (68%). The possibil-

ty of continuing pregnancy was ad-ressed by the counselors in 66% ofases. Women who indicated that the

ontacts on the decision process forDown syndrome

Contact made, %

Contactperceived asinfluential, %

97 74..................................................................................................................

97 33..................................................................................................................

84 37..................................................................................................................

70 42..................................................................................................................

51 37..................................................................................................................

46 25..................................................................................................................

40 18..................................................................................................................

25 25..................................................................................................................

16 45..................................................................................................................

a given person or group during the decision period and,ry much” or “considerably” influential in the decision.

givers before, during and in the

% Satisfied with contact, %

88..................................................................................................................

88..................................................................................................................

74..................................................................................................................

88..................................................................................................................

71..................................................................................................................

88..................................................................................................................

58..................................................................................................................

with a specific caregiver and, in case of contact, and, in

fcontact as “very much” or “considerably” satisfying.

ogy FEBRUARY 2007

ption of continuation of pregnancy wasot raised, appeared to be the ones whoad reported less doubt during the deci-ion process, as compared to the onesho indicated that both options wereiscussed (P � .002). Eighty-nine per-ent of women indicated to have re-eived information about the possibilityf professional psychological help and0% had actually made use of this possi-ility. Thirty percent of the womentated that they would have appreciatedo have had help from a professional sup-ort-group with other parents afterOP, but only one of them really had had

uch a contact.Eight percent of the women indicated

hat they did not dare to embark on aew pregnancy for fear of recurrence. Of

hose who indicated to opt for a nextregnancy, 97% said they would againerminate pregnancy for DS or anothererious abnormality.

OMMENTermination of a wanted pregnancy after

he diagnosis of a disability in the unbornhild is a major life event.11-14 Grief forhe self-chosen loss of a child is often as-ociated with conflicting feelings of re-ief, guilt, doubt, loss of self esteem, and

oral bewilderment.5,10,14-17 In the cur-ent study, we focused on aspects of theecision to TOP in 71 prospectively re-ruited women whose fetus have beeniagnosed with DS.The results of this study have to be

laced in the context of the Dutch soci-ty, in which abortion has been legalizedince 1971. The abortion rate in theetherlands is one of the lowest in theestern world, in the years of this study.0-8.5 per thousand in all of the womenf 15-44 years of age.18 In case of prenataliagnosis of DS, more than 95% of cou-les opt for termination of pregnancy.19

doption is generally not considered asn alternative choice in our country. Thencidence of live born infants with DSas not decreased over the last 20 years.his is due to an increase in maternal agend to the fact that during the time pe-iod of the current study prenatal screen-ng and invasive tests were only available

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roximately 30% of those women optedor a priori invasive prenatal tests.

Four months after termination, childelated motivations to terminate preg-ancy were predominant, but self and

amily related motivations played an im-ortant role too. Doubt about the deci-ion to terminate was mainly related tohe conflict between reason and emo-ion, feelings of guilt about ending a life,nd disagreement with the partner.here were high levels of satisfactionith the information received about therocedure of prenatal testing and the im-lications of a child with DS. The deci-ional process was influenced most byhe partner and much less by (health)aregivers or family and friends. Becauseeing influenced should be clearly differ-ntiated from the feeling of pressure dur-ng an essentially nondirective counsel-ng process,20 we addressed the lattertem separately. Pressure (as a negativeonnotation of influence) was felt by aow percentage of women, with ‘values ofociety’ as the most frequent origin (8%)nd pressure by medical staff in only onef the 71 women. In a retrospective studynd in our total prospective cohort ‘pres-ure’ was felt by 17% and 14% of women,espectively.21 Others found a percent-ge of sixteen percent.22 Satisfactionith the support by the most intimately

nvolved caregivers was high.It would be interesting to know what

he response to our questions would bef the Dutch women who chose to con-inue their pregnancy after the diagnosisf DS. Skotko performed such a ques-ionnaire study in the United States,- � 20 years (mean 4.4 years) after therenatal diagnosis of DS in 141 womenho had decided to continue their preg-ancy.8 Although satisfied with the care,

he majority of respondents expressedrustration with the information andounseling process: test results of diag-osis had not always been conveyed inerson, there was a perceived lack of in-

ormation on DS, and a lack of referral toS support groups. The women of our

ohort were generally more positivebout counseling and support, whichight be due to the fact that both obste-

ricians and geneticists are more familiar
ith TOP in case of DS, than with a con-
inuation of the pregnancy. It may alsoe due to the fact that our study con-erned more recent data, as Skotko8

ound a higher satisfaction amongomen who had more recent experi-

nces. The latter study covers a long pe-iod from 1982 till 2002 whilst our studyas restricted to terminations between999 and 2002. Other reasons for the dis-ongruency with the data of Skotko8 maye related to the fact that women whohoose to terminate may have a differentindset than those who choose to con-

inue, and this difference might influ-nce how they judge the counseling andupport. Moreover, there may be cul-ural differences between the popula-ions in the Netherlands and the Unitedtates. In our population the informa-ion given about the period after TOPas considered suboptimal. This alsoarallels Skotko’s findings8 and is clearlychallenge for improvement of care.There are some limitations of our

tudy. First, only 77% of women partic-pated. Although this is a high percent-ge for this type of research, it cannot bexcluded that the findings would haveeen different with a larger participa-ion. Second, some authors, like Skotko,8

refer a 7-point Likert scale, because thatight give some robust data. Third, our

ata relate predominantly to Caucasianomen (�90% in this population), so

onclusions can only be made regardinghis population. Moreover, the numberf women included, was too small totudy effects of the various religions. Fi-ally, we did not ask as to how theomen were informed about the diag-osis of DS. So we cannot make sugges-

ions on the preferred way of informinghem.

The following findings from our studyay have implications for clinical prac-

ice in women who decide to terminateregnancy in case of Down syndrome.

1. In the decisional process the part-ner has a key role: his reported in-fluence on the decision appeared tobe far out the most important one.In motivations relating to TOPmore than 50% of women men-tioned fear of (too) heavy burden
on their relationship. Disagree-

ment with the partner was men-tioned as a reason for doubt by38% of the women, and 11% ofthem indicated to have acquiescedin their partners wish to terminate.Therefore, it is essential to involvealways both partners in the coun-seling.

2. The responses women gave con-cerning causes of doubt demon-strate the complex and conflictingaspects of the decision. The per-centage of women with high orconsiderable level of doubt in thedecision period was relatively large(21%). Data on this subject arelacking in literature. It may well bethat this group is extra vulnerableto maladjustment. Caregiversshould be attentive to this phe-nomenon and should offer psy-chological assistance in case of dif-ficulties in decision-making. Itshould be monitored whether suchan assistance is indeed helpful.

3. It is standard practice of nondirec-tive approach always equally to dis-cuss both options of continuingand terminating the pregnancy incounseling of fetal abnormality. Inthe current study only 66% ofwomen indicated that they hadbeen counseled regarding both op-tions. This does not seem correct,because with nondirective coun-seling both options should havebeen addressed in all women.However, it is likely to reflect theclear decision to terminate preg-nancy in part of the women, giventhat we found a strong associationbetween the assertion of thewomen that this option to con-tinue pregnancy had not been dis-cussed and their lack of doubt atdecision-making (P � .002). Onemay wonder if the option to con-tinue pregnancy in women with nodoubt at all should be discussed asthoroughly as in the other women.It remains to be seen if the standardbecome discussing the option ofabortion in counseling in the Neth-erlands.

4. In the literature on decisional pro-
cesses after a prenatal diagnosis of

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Down syndrome, the level of un-certainty about the precise mani-festation of the disorder in thechild is an important determi-nant.23,24 Especially DS is charac-terized by a large diversity of ex-pression that cannot be ascertainedprenatally. Although only 14% ofthe interviewed women mentionedthis as a cause of doubt, addressingthis issue explicitly and discussingthe questions in detail might con-tribute to better coping.

5. Our results as well as those ofSkotko8 show that support groupsor contact with other parents insimilar situations is an underusedand maybe undervalued way ofhelping those clients.

6. Almost all women stated that self-interest had played a role in theirdecision to terminate a DS preg-nancy. Self-interest may some-times lead to feelings of guilt. Pos-sible feelings of guilt shoulddefinitively be mentioned and dis-cussed during counseling. And, ifclearly present, persistent and in-terfering with daily functioning,psychological assistance is indi-cated.

7. Norms and moral values of societydid play a role of considerable im-portance. Thirty percent of thewomen indicated that they had hadto defend their decision to TOPone or more times. Almost half ofthem had the opinion that in now-adays society there is a lack of re-spect for disabled people (reason ofdoubt at decision making, Table 2).And, finally, the factor ‘valuesof society’ was most frequentlynamed as cause of perceived pres-sure. Clinicians should emphasizeto the mother/ father that whateverdecision they make, a considerablepart of their social environmentmay have negative comments ontheir decision, as they probablyalso would have in case the oppo-site decision would have beenmade.

The questions asked to the women in
his study were sometimes confronting m
49.e6 American Journal of Obstetrics & Gynecol

nd painful. Yet, especially these ques-ions led to recognition and were men-ioned by many respondents as very pos-tive for coping. The women completedhe questionnaires in a remarkably opennd self-consistent way. Termination ofn initially wanted pregnancy after diag-osis of DS proved to be a profoundlyifficult decision for a substantial part ofomen. More data about reasons foroubt and motivations for the ultimateecision to terminate pregnancy may beeneficial as well for the mother as forhe medical caregivers.1,2

f

CKNOWLEDGMENTShe authors thank all respondents for their timend effort (at times perhaps painful), and thank.J. Tijmstra and H. Kooijman for their criticalomments.

EFERENCES. Mansfield C, Hopfer S, Marteau TM. Termi-ation rates after prenatal diagnosis of Downyndrome, spina bifida, anencephaly, andurner and Klinefelter syndromes: a systematic

iterature review. European Concerted Action:ADA (Decision-Making After the Diagnosis of aetal Abnormality). Prenat Diagn 1999;19:08-12.. Peller AJ, Westgate MN, Holmes LB. Trends

n congenital malformations, 1974-1999: effectf prenatal diagnosis and elective termination.bstet Gynecol 2004;104:957-64.. Caruso TM, Westgate MN, Holmes LB. Im-act of prenatal screening on the birth status of

etuses with Down syndrome at an urban hos-ital, 1972-1994. Genet Med 1998;1:22-8.. Helm DT, Miranda S, Chedd NA. Prenataliagnosis of Down syndrome: mothers’ reflec-ions on supports needed from diagnosis toirth. Ment Retard 1998;36:55-61.. Katz Rothman B. The tentative pregnancy:renatal diagnosis and the future of mother-ood. London: Penguin; 1994.. Tijmstra TJ, Bosboom GJ, Bouman K. [Ex-eriences of women who decided to continuehe pregnancy after diagnosis of Down’s syn-rome]. In Dutch. Ned Tijdschr Geneeskd000;144:2104-7.. Tijmstra T, Bosboom GJ, Bouman K. Prena-al dianosis of Down’s syndrome: experiencesf women who decided to continue with theregnancy. Int J Risk Saf Med 2004;16:91-6.. Skotko BG. Prenatally diagnosed Down syn-rome: mothers who continued their pregnan-ies evaluate their health care providers. Am Jbstet Gynecol 2005;192:670-7.. Commentary online. Am J Obstet Gynecol005;192:3A.0. Korenromp MJ, Iedema-Kuiper HR, vanpijker HG, Christiaens GCML, Bergsma J. Ter-
ination of pregnancy on genetic grounds: 9
ogy FEBRUARY 2007

oping with grieving. J Psychosom Obstetynaecol 1992;13:93-105.1. Hunfeld JAM, Wladimiroff JW, Passchier J.rediction and course of grief four years aftererinatal loss due to congenital anomalies: a

ollow-up study. Br J Med Psychol 1997;0:85-91.2. Korenromp MJ, Page-Christiaens GCML,out Jvd, et al. Long-term psychological con-equences of pregnancy termination for fetalbnormality: a cross sectional study. Prenat Di-gn 2005;25:253-60.3. Salvesen KA, Oyen L, Schmidt N, Malt UF,ik-Nes SH. Comparison of long-term psycho-

ogical responses of women after pregnancyermination due to fetal anomalies and aftererinatal loss. Ultrasound Obstet Gynecol997;9:80-5.4. Statham H, Solomou W, Chitty L. Prenataliagnosis of fetal abnormality: psychological ef-

ects on women in low-risk pregnancies. Bail-ieres Best Pract Res Clin Obstet Gynaecol000;14:731-47.5. Black RB. A 1 and 6 month follow-up ofrenatal diagnosis patients who lost pregnan-ies. Prenat Diagn 1989;9:795-804.6. Kersting A, Dorsch M, Kreulich C, Klocken-usch W. Coping with termination of pregnancy

or fetal abnormality. Prenat Diagn 2004;24:7-72.7. Black RB. Psychosocial issues in reproduc-ive genetic testing and pregnancy loss. Fetaliagn Ther 1993;8:164-73.8. Wijsen C, van Lee L. Landelijke Abortusegistratie 2004 [Registration of abortion in theetherlands 2004]. In Dutch. Utrecht: de Rut-ers Nisso Groep; 2005.9. Annual Report of the Dutch Working Partyn Prenatal Diagnosis and Therapy. (The Dutchociety of Obstetrics and Gynaecology.) Avail-ble at: www.nvog.nl/net).0. Clark AJ. The process of genetic counsel-

ing: beyond non-directiveness. In: Harper P;lark AJ, eds. Genetics society and clinicalractice. Oxford: BIOS Scientific Publishers997.1. Korenromp MJ, Page-Christiaens GC, vanen Bout J, Mulder EJH, Visser GHA. Is thereressure from society to terminate pregnancy inase of a fetal anomaly? Prenat Diagn 2006;6:85-6.2. Michie S, Bron F, Bobrow M, Marteau TM.ondirectiveness in genetic counseling: an em-irical study. Am J Hum Genet 1997;60:40-7.3. Pryde PG, Drugan A, Johnson MP, IsadaB, Evans MI. Prenatal diagnosis: choicesomen make about pursuing testing and actingn abnormal results. Clin Obstet Gynecol993;36:496-509.4. Schechtman KB, Gray DL, Baty JD, Roth-an SM. Decision-making for termination ofregnancies with fetal anomalies: analysis of3,000 pregnancies. Obstet Gynecol 2002;9:216-22 [Erratum in: Obstet Gynecol 2002;
9:678].

APD


PPENDIXart of the general questionnaire as used for the study in 71 women at 4 months after termination of pregnancy because ofown syndrome. The original was in Dutch.

What is your education?

Œ primary school, high school education.......................................................................................................................................................................................................................................................................................................................................................................

Œ secondary school education.......................................................................................................................................................................................................................................................................................................................................................................

Œ college or academic education................................................................................................................................................................................................................................................................................................................................................................................

What is your religion?.......................................................................................................................................................................................................................................................................................................................................................................

Œ religious but not member of a specific church Œ Dutch Reformed.......................................................................................................................................................................................................................................................................................................................................................................

Œ Protestant Œ Roman Catholic.......................................................................................................................................................................................................................................................................................................................................................................

Œ Islamic Œ other, namely _________.......................................................................................................................................................................................................................................................................................................................................................................

Œ Jewish Œ not religious................................................................................................................................................................................................................................................................................................................................................................................

Does your religion influence important decisions in your life? (one answer only).......................................................................................................................................................................................................................................................................................................................................................................

Œ always Œ rarely.......................................................................................................................................................................................................................................................................................................................................................................

Œ frequently Œ never.......................................................................................................................................................................................................................................................................................................................................................................

Œ sometimes Œ not applicable................................................................................................................................................................................................................................................................................................................................................................................

Do you have children?.......................................................................................................................................................................................................................................................................................................................................................................

Œ yes, _________ child(ren) Œ no................................................................................................................................................................................................................................................................................................................................................................................

How did you become pregnant? (one answer only).......................................................................................................................................................................................................................................................................................................................................................................

Œ as planned.......................................................................................................................................................................................................................................................................................................................................................................

Œ as planned, but after more than one year of wishing for a child.......................................................................................................................................................................................................................................................................................................................................................................

Œ through subfertility treatment.......................................................................................................................................................................................................................................................................................................................................................................

Œ unplanned but welcome.......................................................................................................................................................................................................................................................................................................................................................................

Œ unplanned, in doubt................................................................................................................................................................................................................................................................................................................................................................................

What was the reason for prenatal diagnosis? (more than one answer possible).......................................................................................................................................................................................................................................................................................................................................................................

Œ abnormal obstetric findings.......................................................................................................................................................................................................................................................................................................................................................................

Œ abnormal findings at ultrasonography.......................................................................................................................................................................................................................................................................................................................................................................

Œ maternal age.......................................................................................................................................................................................................................................................................................................................................................................

Œ I already have a disabled child.......................................................................................................................................................................................................................................................................................................................................................................

Œ congenital abnormalities in close family members.......................................................................................................................................................................................................................................................................................................................................................................

Œ congenital abnormalities in the family of my partner.......................................................................................................................................................................................................................................................................................................................................................................

Œ use of prescription drugs.......................................................................................................................................................................................................................................................................................................................................................................

Œ I wanted to be sure about the health of my child.......................................................................................................................................................................................................................................................................................................................................................................

Œ other _________................................................................................................................................................................................................................................................................................................................................................................................

How was the abnormality discovered? (more than one answer possible).......................................................................................................................................................................................................................................................................................................................................................................

Œ ultrasonography.......................................................................................................................................................................................................................................................................................................................................................................

Œ nuchal translucency measurement.......................................................................................................................................................................................................................................................................................................................................................................

Œ abnormality scan.......................................................................................................................................................................................................................................................................................................................................................................

Œ chorionic villus sampling.......................................................................................................................................................................................................................................................................................................................................................................

Œ amniocentesis.......................................................................................................................................................................................................................................................................................................................................................................

Œ serum screening.......................................................................................................................................................................................................................................................................................................................................................................

Œ other _________

FEBRUARY 2007 American Journal of Obstetrics & Gynecology 149.e7

mt


1

(Cont’d)

In previous studies parents have mentioned a number of motives for their decision to terminate the pregnancy. These isolated state-ents are derogatory to the careful weighing as done by the interviewed persons in question. Would you please yet indicate to what extent

hese motives applied to you?

Named motives

1. very much applicable2. to some extent applicable3. neutral4. very little/n.a.

Please mark the number appropriate for you. 5. not at all applicable

I thought I would become unhappy at having this child 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I was afraid of regretting afterwards if I had this child 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I did not want a disabled child 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I was afraid to be blamed for continuing the pregnancy of a disabled child 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I thought that respect for disabled children in our society is too low 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I would feel inferior as a person having a disabled child (low self esteem) 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I considered the abnormality too severe 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I considered the uncertainty about the consequences of the abnormality too high 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I worried about the care of the child after my/our death 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I considered the burden for the child itself too heavy 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I believed the child would never be able to function independently 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I acquiesced in the wish of my partner to terminate the pregnancy 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I considered the burden too heavy for myself 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I thought it would obstruct my career too much 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I considered the burden too heavy for my relationship 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I considered the burden too heavy for my other child(ren) 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

I considered the financial burden too high 1 2 3 4 5

Have you talked with professionals about the possibility of continuing the pregnancy?

Œ yes Œ no

To what extent have the following persons influenced your decision to terminatepregnancy?

1. very much2. considerably3. to some extent4. very little5. not at all6. not contacted

obstetrician 1 2 3 4 5 6.......................................................................................................................................................................................................................................................................................................................................................................

clinical geneticist 1 2 3 4 5 6.......................................................................................................................................................................................................................................................................................................................................................................

social worker 1 2 3 4 5 6.......................................................................................................................................................................................................................................................................................................................................................................

midwife 1 2 3 4 5 6.......................................................................................................................................................................................................................................................................................................................................................................

general practitioner 1 2 3 4 5 6.......................................................................................................................................................................................................................................................................................................................................................................

religious counselor 1 2 3 4 5 6.......................................................................................................................................................................................................................................................................................................................................................................

partner 1 2 3 4 5 6.......................................................................................................................................................................................................................................................................................................................................................................

friends/family 1 2 3 4 5 6.......................................................................................................................................................................................................................................................................................................................................................................

other persons with comparable experience 1 2 3 4 5 6

If you have felt pressure to take your decision, from whom did that pressure come? (more than one answer possible)

Œ family/friends.......................................................................................................................................................................................................................................................................................................................................................................

Œ medical caregivers.......................................................................................................................................................................................................................................................................................................................................................................

Œ religious society.......................................................................................................................................................................................................................................................................................................................................................................

Œ general norms in society



(Cont’d)

If you have felt pressure to take your decision, from whom did that pressure come? (more than one answer possible)

Œ other _________.......................................................................................................................................................................................................................................................................................................................................................................

Œ not applicable, I did not feel pressure................................................................................................................................................................................................................................................................................................................................................................................

Have you had any doubt about the decision to terminate the pregnancy?.......................................................................................................................................................................................................................................................................................................................................................................

Œ very much.......................................................................................................................................................................................................................................................................................................................................................................

Œ considerable.......................................................................................................................................................................................................................................................................................................................................................................

Œ not very much.......................................................................................................................................................................................................................................................................................................................................................................

Œ hardly.......................................................................................................................................................................................................................................................................................................................................................................

Œ not at all................................................................................................................................................................................................................................................................................................................................................................................

If you had doubt what was the cause of your doubt? (more than one answer possible).......................................................................................................................................................................................................................................................................................................................................................................

Œ I felt caught off guard.......................................................................................................................................................................................................................................................................................................................................................................

Œ it conflicted with my religion.......................................................................................................................................................................................................................................................................................................................................................................

Œ my knowledge of the abnormality was insufficient.......................................................................................................................................................................................................................................................................................................................................................................

Œ I had the feeling of killing a child.......................................................................................................................................................................................................................................................................................................................................................................

Œ I had doubts about the diagnosis.......................................................................................................................................................................................................................................................................................................................................................................

Œ the severity of the abnormality was uncertain.......................................................................................................................................................................................................................................................................................................................................................................

Œ my partner and I disagreed.......................................................................................................................................................................................................................................................................................................................................................................

Œ the consequences were incalculable for me.......................................................................................................................................................................................................................................................................................................................................................................

Œ my reason was in conflict with my feelings.......................................................................................................................................................................................................................................................................................................................................................................

Œ I was afraid of the procedure/complications of the termination................................................................................................................................................................................................................................................................................................................................................................................

Which method was used for the termination?.......................................................................................................................................................................................................................................................................................................................................................................

Œ dilatation and evacuation (less than 14 weeks of pregnancy).......................................................................................................................................................................................................................................................................................................................................................................

Œ induction of labor.......................................................................................................................................................................................................................................................................................................................................................................

Œ surgically/Finks method (more than 14 weeks of pregnancy).......................................................................................................................................................................................................................................................................................................................................................................

Œ other _________

Have you been informed about possibilities for further assistance in coping with this loss?

Œ yes Œ no

Have you sought professional help after termination of pregnancy?

Œ no.......................................................................................................................................................................................................................................................................................................................................................................

Œ yes, individually.......................................................................................................................................................................................................................................................................................................................................................................

Œ yes, with my partner.......................................................................................................................................................................................................................................................................................................................................................................

Œ yes, with other persons with comparable experience

Do you currently feel a need for contact with people with comparable experience?

Œ yes, very much Œ no, not really.......................................................................................................................................................................................................................................................................................................................................................................

Œ yes, to some extent Œ no, not really

How satisfied are you about the information youhave received?

1. very much2. considerably3. neutral4. not very much5. not at all

. . . about the procedure of prenatal testing 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

. . . about the result of the diagnostic test 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

. . . about the procedure of the termination 1 2 3 4 5................................................................................................................................................................................................................................................................................................................................................................................

. . . about the period after the termination 1 2 3 4 5



1

(Cont’d)

How satisfied are you with the counseling you havereceived?

1. very much2. considerably3. neutral4. not very much5. not at all6. not contacted

obstetrician 1 2 3 4 5 6................................................................................................................................................................................................................................................................................................................................................................................

midwife 1 2 3 4 5 6................................................................................................................................................................................................................................................................................................................................................................................

clinical geneticist 1 2 3 4 5 6................................................................................................................................................................................................................................................................................................................................................................................

social worker 1 2 3 4 5 6................................................................................................................................................................................................................................................................................................................................................................................

nursing staff 1 2 3 4 5 6................................................................................................................................................................................................................................................................................................................................................................................

general practitioner 1 2 3 4 5 6................................................................................................................................................................................................................................................................................................................................................................................

spiritual counselor (clergy etc.) 1 2 3 4 5 6

Did you have to defend your decision as to terminate pregnancy?.......................................................................................................................................................................................................................................................................................................................................................................

Œ very much.......................................................................................................................................................................................................................................................................................................................................................................

Œ considerably.......................................................................................................................................................................................................................................................................................................................................................................

Œ to some extent.......................................................................................................................................................................................................................................................................................................................................................................

Œ hardly.......................................................................................................................................................................................................................................................................................................................................................................

Œ no................................................................................................................................................................................................................................................................................................................................................................................

Do you have a wish for further children at this moment?.......................................................................................................................................................................................................................................................................................................................................................................

Œ very much.......................................................................................................................................................................................................................................................................................................................................................................

Œ considerably.......................................................................................................................................................................................................................................................................................................................................................................

Œ neutral.......................................................................................................................................................................................................................................................................................................................................................................

Œ hardly.......................................................................................................................................................................................................................................................................................................................................................................

Œ no.......................................................................................................................................................................................................................................................................................................................................................................

Œ I do not want a new pregnancy..............................................................................................................................................................................................................................................................................................................................................................

Œ because I consider my family complete..............................................................................................................................................................................................................................................................................................................................................................

Œ because I dare not embark on a new pregnancy..............................................................................................................................................................................................................................................................................................................................................................

Œ other ___................................................................................................................................................................................................................................................................................................................................................................................

Would you choose for prenatal diagnosis in a new pregnancy?.......................................................................................................................................................................................................................................................................................................................................................................

Œ yes.......................................................................................................................................................................................................................................................................................................................................................................

Œ no.......................................................................................................................................................................................................................................................................................................................................................................

Œ I don’t know yet................................................................................................................................................................................................................................................................................................................................................................................

In which cases would you choose again for termination of pregnancy? (more than one answer possible).......................................................................................................................................................................................................................................................................................................................................................................

Œ Down syndrome.......................................................................................................................................................................................................................................................................................................................................................................

Œ other developmental disorder.......................................................................................................................................................................................................................................................................................................................................................................

Œ visible abnormalities in the face of a child.......................................................................................................................................................................................................................................................................................................................................................................

Œ wheel chair dependency.......................................................................................................................................................................................................................................................................................................................................................................

Œ other physical abnormalities or conditions.......................................................................................................................................................................................................................................................................................................................................................................

Œ expected perinatal mortality.......................................................................................................................................................................................................................................................................................................................................................................

Œ very low chances of survival (up to 6 months).......................................................................................................................................................................................................................................................................................................................................................................

Œ limited life expectancy (up to 30 years).......................................................................................................................................................................................................................................................................................................................................................................

Œ late onset diseases.......................................................................................................................................................................................................................................................................................................................................................................

Œ other ___



(Cont’d)

Would you indicate whether and how much the following statement applies to you on thismoment

1. very much2. to some extent3. very little4. not5. not at all

I regret my decision to terminate pregnancy 1 2 3 4 5


Documents

Maternal Decision to Terminate Pregnancy After Diagnosis of Down Syndrome