By Israela Meyerstein, MSW, LCSW
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Pregnancy Loss |
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The Mixed Blessing of Genetic Testing |
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How Social Workers Help Couples Recover from Pregnancy Loss |
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Resources |
Introduction
Our genes or DNA determine what we will look like, how we will grow, what diseases we may have or inherit, and some of our reactions to the environment. Recent advances in biology, technology, and genetics have had a significant impact on the lives of many couples and families, because now we can anticipate which traits may be passed down from one generation to another, through the genes.
Genetic testing of prospective parents can identify those who carry a disease that may be passed on to their children. Genetic testing of fetuses provides information about potential birth defects, and gives couples high level probability information upon which to base decisions. These new technologies have given us sophisticated information and advanced technical solutions, but often without the accompanying practical, emotional, and ethical guidelines to handle the information and experiences.
New dilemmas are created as couples are called upon to make difficult life and death decisions, such as terminating a pregnancy, which can have far reaching practical, spiritual, and emotional consequences. When genetic defects lead to fetal loss, whether by miscarriage, elective termination, or stillbirth, it can be a devastating experience with ripple effects on couple and family development.
Pregnancy Loss
Miscarriage occurs frequently, occurring in 20 percent of all pregnancies and in one-third of all women, a loss which affects 2.5 million Americans, and more if one counts their families. Despite the frequency of its occurrence, fetal loss is an under acknowledged and under treated experience.
Society seems to downplay the event with social pressure to recover and “get over it,” which may be a result of others’ discomfort with sadness and loss. Silence and awkward communication from friends, relatives, and co-workers often leave the couple feeling estranged and isolated. It is possible that the minimizing of the loss may actually prolong adjustment and recovery. It is not unusual when such a loss becomes submerged and reappears years later as “unfinished business” in the life of a couple.
In reality, each loss can evoke a full scale grieving process, with emotions such as denial, anxiety, anger, guilt, and depression. These losses are difficult in part because they are out of sync with life cycle expectations, and shatter dreams of a healthy baby or of a future as parents. There may be resurgence of old losses, or an exacerbation of pre-existing conditions, such as depression. While such losses may bring the couple together in mourning, they are just as likely to create crisis and distance, especially in relationships with pre-existing difficulty.
According to the National Institutes of Health (NIH) the average time it takes to recover emotionally from a miscarriage can range from nine to fifteen months. Emotional reactions will be influenced by one’s family, one’s gender, religious beliefs, and cultural rules about grieving.
Some partners express emotions and grieve differently, and often leave parents coping in different ways. One partner may not show outward displays of grief in an effort to protect the other from facing difficult feelings, but this may result in the other partner feeling more isolated and alone. The participation of extended family members, friends, co-workers, the nature of the hospital experience, doctor-patient relationship, and availability of supportive resources, will all affect how a couple deals with the situation.
The Mixed Blessing of Genetic Testing
Half of all miscarriages are due to the chromosomal abnormalities passed to the child by the parents. Testing of parental chromosomes is generally done after the third miscarriage.
Prenatal genetic testing is recommended when the mother is 35-years old or older. Becoming pregnant at a relatively older age is the most common cause of reproductive failure due to genetics.
The detection of Down’s syndrome is a common reason for genetic testing. Down’s syndrome is the most frequent genetic cause of mild to moderate mental retardation and associated medical problems. In women age 35, the rate that Down’s syndrome occurs in the general population is one in 400 pregnancies. However, by age 45 that incidence increases dramatically to one in 35 pregnancies.
Other reasons for genetic testing are a family history of genetic disease, two or more unexplained miscarriages or pregnancies with birth defects, and exposure to potentially harmful substances. There is some risk in the testing itself and some couples are ambivalent and even avoid testing. The testing can be stressful, depending on the results, disease found, degree of uncertainty, nature of the decision needing to be made, coping options available, and personal factors in the couple.
The vast majority of couples choose to terminate the pregnancy once severe abnormalities are detected. Having to make such weighty decisions, made worse by only probability scenarios, can burden couples who need to make crucial decisions without all the information that would make those decisions easier.
When termination is elected, many couples experience some level of depression, fear, anger, and guilt. Risk factors include prior history of depression, poor social support, ambivalence or pressure about the termination decision, and disturbed marital and family communication. Societal, familial, legal, and religious attitudes can affect the degree of stress.
For example, a very religious extended family may shame and disapprove of the couple’s decision to terminate. Diagnosis of abnormalities late in the pregnancy may result in a necessary termination via vaginal delivery of a dead baby, which is most difficult on a couple medically, emotionally, and ethically. Sometimes a couple feels traumatized by the medical procedures, and they may be unnerved by the unexpected depth of their emotional reactions.
Genetic counseling is generally recommended after three miscarriages to help the couple get more information about a possible undiagnosed genetic condition, and make decisions based on this information. Genetic counseling offers support in understanding options, clarifying decision-making, helping with coping, and recommending resources.
It cannot fully address the subsequent unfolding of the grieving process, which begins after the medical procedures are undergone, and continues for some time after. Furthermore, some couples are plagued with unanswered spiritual questions, and need time to adapt to their changed reality and future direction.
Since couples in this population have a high risk of recurrence of genetically affected pregnancies, stresses can be cumulative, as in the case of an infertility diagnosis. Infertility treatments involve extended arduous testing, and often years of expensive and intensive clinical interventions, with only mixed success rates. There is a growing awareness of the powerful impact that infertility has on the life of a couple and family.
Referral for social work follow up and continued counseling following pregnancy loss is indicated in situations of prolonged grieving and depression, ongoing difficulty in couple communication, and strained extended family relationships. This counseling can be important because how the loss is handled will impact sexual and emotional intimacy in the couple, future children, and interpersonal relating among family members. Couples often benefit from social work counseling to resolve their feelings about the loss, recover from the experience, begin to heal, return to daily life and work, and take new steps in their lives.
How Social Workers Help Couples Recover from Pregnancy Loss
Social workers are well equipped to intervene in complex problems of loss from a multidimensional perspective, incorporating biological, psychological, and social factors. Social workers can help “buffer” the effects of pregnancy loss by seeing the couple as a unit, searching for adaptive strengths, improving sharing and communication. These efforts can strengthen the couple’s ability to cope and be resilient for the future.
Specific ways in which social workers help are:
- Strengthening the couple as a unit by seeing them together and encouraging their setting time aside for talking and listening to one another
- Creating a safe, accepting, empathic environment
- Providing comfort to the individuals for each one’s unique experience of the loss
- Inquiring about both partners’ efforts at adjustment and difficulties in grieving
- Examining unhelpful beliefs and behaviors
- Supporting the couple’s efforts to share emotional tasks of grieving and recovery
- Validating emotions and the difficulty of the loss, especially when it involved making difficult life and death decisions
- Normalizing grieving and giving couples a “road map” of what to expect in terms of reactions for themselves and others
- Anticipating and coaching how to handle awkward, hurtful reactions from co-workers, friends, relatives
- Assessing strengths and availability of supportive resources in extended family, friendship network, professional community, faith community
- Facilitating the couple’s attempt to make meaning out of the crisis
- Exploring spiritual tools and creating meaningful rituals of memorial to their unborn child
- Encouraging action steps that promote healing, such as making a contribution to help others in a meaningful way
- Following and monitoring mental and physical health in the subsequent year, anticipating trouble spots, anniversary dates, loyalty issues
- Supporting the couple’s efforts to resume a normal life: restoring fun activities together, pursuing conception or adoption options, and new directions
Resources
The following are some useful resources for couples experiencing pregnancy loss:
Beyond Prenatal Choice , 1990. Centering Corp., 1531 N. Saddle Creek Rd., Omaha, NE 68104-5064, (402) 553-1200. A booklet for the family who chooses to terminate their pregnancy written by genetic counselors.
Internet Sites:
- www.Resolve.org
- www.Aheartbreakingchoice.com
- www.adoption.com ( there is infertility info on this site)
Books:
- Kluger-Bell, K. (1998). Unspeakable Loss: Healing from Miscarriage, Abortion, and Other Pregnancy Loss. New York: Quill. Also includes list of resources.
- Minnick, M.A., Delp, K.J., Ciotti, M.C. 4 th edition (1999). A Time to Decide, A Time to Heal: for Parents Making Difficult Decisions About Babies They Love. St. Johns, Michigan: Pineapple Press. Also includes list of resources.
