Family planning decisions after prenatal detection of fetal abnormalities

Family planning decisions after prenatal detection of fetal abnormalities

Family planning decisions after prenatal detection of fetal abnormalities Lee P. Shulman, MD, Chris Grevengood, MD, Owen P. Phillips, MD, Susan J. Gro...

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Family planning decisions after prenatal detection of fetal abnormalities Lee P. Shulman, MD, Chris Grevengood, MD, Owen P. Phillips, MD, Susan J. Gross, MD, Phyllis C. Mace, RN, and Sherman Elias, MD

Memphis, Tennessee OBJECTIVE: Our purpose was to assess the family planning decisions made by women found to be carrying fetuses with chromosome abnormalities or neural tube defects. STUDY DESIGN: We studied the family planning decisions of 132 women carrying fetuses with chromosome abnormalities (n = 91) or neural tube defects (n = 41) with regard to prenatal diagnOSis, pregnancy management decision, patient's gravidity, and maternal and gestational age. RESULTS: Twenty women (17 carrying fetuses with chromosome abnormalities and 3 with fetal neural tube defects) elected permanent sterilization after completion of the affected pregnancy. Only maternal age and fetal chromosome abnormalities were associated with a decision to obtain permanent sterilization. CONCLUSIONS: Most women carrying fetuses with chromosome abnormalities or neural tube defects will not choose permanent sterilization after completion of the pregnancy. Delaying such decisions until resolution of grief and depression is now facilitated by the availability of safe, reliable, and relatively long-term reversible contraceptive agents. (AM J OBSTET GYNECOL 1994;171:1373-6.)

Key words: Prenatal diagnosis, abnormal pregnancy, family planning, contraception, sterilization.

The prenatal detection of fetal abnormalities invariably leads to great stress and emotional upset for the patient, her partner, and family members. Regardless of the ultimate decision to continue or terminate an abnormal pregnancy, many women express great concern regarding future pregnancies. 1 At our center we are frequently requested to provide permanent sterilization after termination of an abnormal pregnancy or delivery of an anomalous infant; our practice has been to counsel patients and couples to consider delaying a decision to undergo permanent sterilization until a time at which grief and emotional trauma resulting from the abnormal pregnancy have resolved. We believe this allows women and their families to more objectively assess the various factors that influence a decision to obtain permanent, and possibly irreversible, contraception. To evaluate the impact of our counseling and the factors that affect family planning decision-making after From the DiVISion of Reproductive Genetics, Department of Obstetrics and Gynecology, Unzversity of Tennessee, MemphIS. Presented at the Assoctatwn of Reproductwe Health Profemonals Annual Meeting and Scientific Program, Los Angeles, California, November 1993. Recewed for publzcatwn january 12, 1994; reVISed March 21, 1994; accepted May 9, 1994. Repnnt requests: Lee P. Shulman, MD, Department of Obstetrics and Gynecology, Unzverszty of Tennessee, Memphis, 853 jefferson Ave., Room E-102, MemphIS, TN 38103-2896. COPYright © 1994 by M05by-Year Book, Inc.

0002-9378/94 $3.00 + 0 6/1/57358

completion of an abnormal pregnancy, we studied the family planning decisions of women who had been diagnosed at our center with fetal chromosome abnormalities or neural tube defects during the first or second trimesters of pregnancy.

Material and methods We reviewed the family planning decisions of women who had been diagnosed as carrying fetuses with chromosome abnormalities or neural tube defects by ultrasonography, amniocentesis, or chorionic villus sampling through the Division of Reproductive Genetics, Department of Obstetrics and Gynecology at the University of Tennessee, Memphis. Women who were > 22 weeks' gestation were excluded, as such women were unable to obtain pregnancy termination at our center because of advanced gestational age. We excluded such patients because the contraceptive decision-making process after completion of an abnormal pregnancy in women unable to obtain pregnancy termination may have differed from the process in women for whom pregnancy termination was an option. All prenatal diagnoses were confirmed after pregnancy termination or delivery. Information regarding family planning was obtained by either review of charts or verbal communication with patients or their physicians; all information was obtained at least 6 months after detection of fetal abnormalities. The type of fetal abnormality, method of 1373

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Table I. Characteristics of 132 women carrying fetuses with chromosome abnormalities or neural tube defects for whom family planning decisions were available Maternal age (yr, mean)

Gestational age (wk, mean)

2.4

36.8

14.6

Ultrasonography alone* 5 Chorionic villus sampling 43 Early amniocentesist 8 Traditional amniocentesis! 35

2.1

27.3

18.2

Ultrasonographyalone* 15 Early amniocentesist 2 Traditional amniocentesis! 24

Prenatal diagnOSIs Abnormal fetal chromosomes (n

=

Fetal neural tube defects (n = 41)

91)

Method of diagnosIS

*Cytogenetic and structural diagnoses were confirmed after completion of pregnancy. tPerformed at or before 13.9 weeks' gestation. tPerformed at or after 14.0 weeks' gestation.

prenatal diagnosis, mean patient gravidity, and mean gestational and maternal ages at the time of prenatal diagnosis, as well as the woman's decision to continue or terminate the pregnancy, were reviewed. The twosample t test (Satterthwaite approximation) was used for data analysis. Results

A total of 161 women were identified as carrying fetuses with chromosome abnormalities or neural tube defects, at or before 22 weeks' gestation, among 3938 patients seen at our center during the period Jan. 1, 1988, to June 1, 1993. Fetal chromosome abnormalities were detected in 104 women, and fetal neural tube defects were detected in 57 women. Among the 104 womcn carrying fetuses with chromosome abnormalities, 12 elected to continue their pregnancies and 92 elected to terminate their pregnancies. Among the 57 women carrying fetuses with neural tube defects, 8 electcd to continue their pregnancies and 49 elected to terminate their pregnancies. Complete information regarding family planning decisions was not obtained in 29 cases; accordingly, these cases were excluded from the study. Method of prenatal diagnosis, mean patient gravidity, and maternal and gestational age at the time of diagnosis of the remaining 132 women are summarized in Table I and their family planning decisions are summarized in Tables II and III. Among the 132 women for whom family planning decisions were reviewed, 91 women carried fetuses with chromosome abnormalities (84 cases of autosomal abnormalities and 7 cases of sex chromosome abnormalities) and 41 carried fetuses with neural tube defects (19 cases of anencephaly and 22 cases of spina bifida). Among women carrying fetuses with chromosome abnormalities 10 (11.0%) elected pregnancy continuation (6 of84 cases [7.1%] of autosomal abnormalities and 4 of 7 cases [57.1%] of sex chromosome abnormalities) and 81 (89.0%) elected pregnancy termination. Among women carrying fetuses with neural tube defects 4 elected preg-

nancy continuation (no cases of anencephaly; 4 of 22 cases [18.2%] of spina bifida) and 37 elected pregnancy termination (all 19 cases of anencephaly and 18 of 22 cases [81.8%] of spina bifida). With a two-sample t test (Satterthwaite approximation), there was no significant association (jJ > 0.05) between choice of contraception and gravidity, gestational age at the time of diagnosis, or decision to continue or terminate an affected pregnancy; however, there was a significant association between the decision to undergo permanent sterilization and the detection of fetal chromosome abnormalities


Although many women may consider permanent sterilization immediately after detection of fetal anomalies, most women do not follow through because of an apparently emotional response to a state of extreme duress and grief. Our study shows that most women carrying fetuses with chromosome abnormalities or neural tube defects will not immediately choose permanent sterilization after termination of an affected pregnancy or delivery of an anomalous infant. Overall, only 20 of the 132 women (15.2%) carrying fetuses with chromosome abnormalities or neural tube defects chose permanent sterilization at the time of our study. Only maternal age and the detection of fetal chromosome abnormalities were associated with a decision to undergo permanent sterilization. Analysis of our data suggests that these findings may be primarily related to the ages of our two groups (Table I). Specifically, the mean age of women carrying

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Table II. Family planning decisions of 132 women carrying affected fetuses according to type of fetal abnormality detected Steriltwtion * (No.)

Chromosome abnormalities (n Autosomal (n = 84) Sex chromosome (n = 7) Neural tube defects (n = 41) Anencephaly (n = 19) Spina bifida (n = 22) TOTAL (N = 132)

=

91)

17 16 1 3 2 1 20

(18.7%) (19.0%) (14.3%) (7.3%) (10.5%) (4.5%) (15.2%)

Reversible methodf (No.)

42 40 2 12 5 7 56

(46.7%) (47.6%) (28.6%) (29.3%) (26.3%) (31.8%) (42.4%)

No contraceptwn or currently pregnant (No.)

32 28 4 26 12 14 56

(35.2%) (33.3%) (57.1%) (63.4%) (63.2%) (63.6%) (42.4%)

Percentages may not add to 100 as result of approximation. *Inc1udes both male and female sterilization. tInc1udes hormonal and barrier methods.

Table III. Family planning decisions of 132 women carrying fetuses with chromosome abnormalities or neural tube defects according to decision to continue or terminate affected pregnancy

Pregnancy continuation (n = 14) Pregnancy termination (n = 118) TOTAL (N = 132)

Stenltwtion* (No.)

Reversible methodf (No.)

No contraceptIOn or currently pregnant (No.)

2 (14.3%) 18 (15.3%) 20 (15.2%)

5 (35.7%) 51 (43.2%) 56 (42.4%)

7 (50%) 49 (41.5%) 56 (42.4%)

*Inc1udes both male and female sterilization. tInc1udes hormonal and barrier methods.

fetuses with chromosome abnormalities was significantly


exception to this may be the older woman who recently completed an abnormal pregnancy, usually a pregnancy complicated by fetal chromosome abnormalities. Those women considering prenatal diagnosis or facing a decision regarding pregnancy continuation or termination after the detection of fetal abnormalities should be offered nondirective counseling. s, 4 Such counseling has been endorsed by the World Health Organization and other genetic and medical organizations. 5 •7 Nondirective counseling is an educational process that facilitates a patient's decision-making without dictating, or directing, a patient to a particular management option. Ideally, nondirective counseling permits a patient to arrive at a decision on the basis of the available information and the patient's moral, ethical, or religious values without the interjection of counselor bias. s,7 Whereas nondirective counseling is an integral part of the decision-making process of women deciding whether to undergo prenatal screening or testing or whether to continue or terminate an affected pregnancy, we believe that encouraging women or couples to delay consideration of permanent sterilization after an abnormal pregnancy is warranted until a time at which grief and depression have resolved 8 and not during a time of extreme emotional duress. Our practice has been to counsel such patients to consider delaying decisions concerning permanent sterilization until a time at which grief has resolved so that the decisionmaking process is not unduly influenced by inaccurate

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and unrealistic perceptions of self and future risk arising from emotional trauma brought forth by the prenatal detection of an abnormal fetus. 9 • 10 Perception of recurrence risk has an important impact on the patient's ability to adapt to her current state and her ability to optimistically view the future'; the emotional trauma of an abnormal pregnancy surely detracts from a patient's ability to objectively and accurately assess recurrence risk and other aspects of her life. II. '2 As contraception and pregnancy are important aspects of a woman's life and that of her family, incorrect perceptions could conceivably lead a women or couple to elect permanent, and possibly irreversible, sterilization on the basis of an inaccurate perception of future risk. With the recent introduction of relatively long-term progestational-only contraceptive agents such as the Norplant (Wyeth-Ayerst Laboratories, Philadelphia) subdermal implant system and injectable depot medroxyprogesterone acetate. the renewed availability of hormonal and nonhormonal intrauterine contraceptive devices, the introduction of new progestational agents in oral contraceptives (i.e., desogestrel, norgestimate), and the recent lifting of the prohibition against oral contraceptive use in healthy, nonsmoking women ;;:: 35 years old, women resolving their grief. and depression after the completion of an abnormal pregnancy can now choose from many safe, reliable, and reversible hormonal and nonhormonal contraceptive agents. However, counseling patients regarding specific contraceptive options after the completion of an abnormal pregnancy should be individualized. For example, both the Norplant subdermal implant system and depot medroxyprogesterone acetate demonstrate contraceptive efficacy comparable to that of female or male surgical sterilization methods and would thus be appropriate contraceptive methods for women who may not desire to become pregnant in the foreseeable future but who do not desire permanent sterilization. Nonetheless, mood swings have been reported in women using such progestational-only contraceptive agents"; accordingly, use of these agents may not be warranted in women demonstrating severe grief or depression after completion of an abnormal pregnancy. In such cases consideration of methods such as non progestational intrauterine contraceptive devices may be more appropriate. Regardless of the specific contraceptive option chosen, availability of safe, reliable, long-term, and nonpermanent contraceptive options obviates the need for

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patients to arrive at a rapid and hurried decision regarding permanent sterilization after completion of an abnormal pregnancy. We believe that our practice of encouraging patients to delay consideration of permanent sterilization until a time after grief resolution is facilitated by the availability of these hormonal and nonhormonal contraceptive options and permits patients and couples to avoid making permanent family planning decisions during a period of altered perception of self and recurrence risk. As such, the likelihood of choosing a potentially irreversible contraceptive option that could have a deleterious impact on future reproductive choices and family life may be appreciably reduced. REFERENCES 1. Tunis SL. Prenatal diagnosis of fetal abnonnalities: psychological impact. In: SimpsonJL, Elias SE, eds. Essentials of prenatal diagnosis. New York: Churchill Livingstone, 1993:347-66. 2. Lloyd J, Lawrence KM. Sequelae and support after termination of pregnancy for fetal malfonnation. BMJ 1985; 290:907-9. 3. Shulman LP. Perspectives on counseling in maternal serum alpha-fetoprotein screening. In: Elias S, Simpson JL, eds. Maternal serum screening for fetal genetic disorders. New York: Churchill-Livingstone. 1992;121-32. 4. Milunsky A. Genetic counseling: preconception and as a prelude to prenatal diagnosis. In: Milunsky A, ed. Genetic disorders and the fetus: diagnosis, prevention, and treatment. 3rd ed. Baltimore: The Johns Hopkins University Press, 1993: 1-32. 5. World Health Organization Expert Committee. Genetic counseling. WHO Tech Rep Ser 1969;416:1-16. 6. Wertz DC, Fletcher JC. Attitudes of genetic counselors: a multinational survey. AmJ Hum Genet 1988;42:592-600. 7. Elias S, Simpson JL. Genetic counseling. In: SciarraJJ. ed. Volume 5: gynecology and obstetrics. Philadelphia: Harper & Row, 1991:1-8. 8. Falek A. Sequential aspects of coping and other issues in decision making in genetic counseling. In: Emery AEH, Pullen I, eds. Psychological aspects of genetic counseling. London: Academic Press, 1984: 17-33. 9. Blumberg BD, Golbus MS, Hanson KH. The psychological sequelae of abortion perfonned for a genetic indication. AM J OBSTET GYNECOL 1975;122:799-808. 10. Elias S, Annas G. Reproductive genetics and the law. Chicago: New York: 1987. 11. Toedter LJ, Lasker IN, Alhadeff JM. The perinatal grief scale: development and initial validation. Am J Orthopsychiatry 1988;58:435-49. 12. Ekwo EE, Seals BF, Kim J-O, et al. Factors influencing maternal estimates of genetic risk. Am J Med Genet 1985;20:491-504. 13. National Institutes of Health. Preventing unintended pregnancy: the role of honnonal contraceptives. Clinician 1993;11:10-1.