Genetic Disorders and the Fetus. Группа авторов
been characterized by in‐depth discussions of two areas: first, all medical and scientific aspects of the prenatal diagnosis made (and discussed earlier), and second, recognition and vocalization of emotional responses and reference to experiences (preferably published) of other couples in like circumstances when it was helpful. These sessions have then included explorations concerning guilt, a possible feeling of stigma (because of abortion), anger, upset, family pressures, and how other couples have coped. All of this anticipatory counseling should be tinctured with support and hope when possible.
It is important that the many variables influencing parental decisions about pregnancy termination when faced with a serious disability and/or life‐threatening or limiting disorder or anomaly be recognized and understood.979, 982–985 Parents will automatically bring their moral and religious beliefs to bear on their decision making. So too will their experience of disability and what they had seen in families with affected children. A mother's age, prior periods of infertility, previous miscarriages, a history of an elective abortion or fetal abnormality, all factor into their decisions. Fortunately, not common is the painful quandary of uncertainty concerning severity of the prenatally diagnosed genetic disorder. One example is the mildly affected mother with a 22q11.2 deletion informed about a conotruncal cardiac anomaly in her fetus and uncertain future intellectual disability, the risk for which approximates 30 percent, further compounded by up to 30 percent risk of developing schizophrenia in young adulthood, and autism/autism‐spectrum disorders in about 20 percent.986–991
Longing for and imagining becoming a parent anew or again may also have been bolstered by unexpected bonding that occurred when the mother saw fetal features and/or movements on obstetric ultrasound. A frequent expressed concern is the effect a disabled child would have on the family's other child or children. Worse still, would that child have the burden of caring for the affected sibling after the death of the parents. Would some stigma attach and eventually have an effect on a potential marriage mate for their child or children. Would they have to devote so much time and energy to the needs of a disabled child that it would result in relative neglect of their other children. To what degree, if any, would there be pain or suffering (including psychological) for the affected child.
Perhaps not surprising is the influence of their own parents and their belief in the couple's ability to parent a child with a serious disability. Economic issues also loom large, depending upon the pressures and circumstances of their lives. On occasion, there is an unwillingness to continue pregnancy when a partner has suffered from the same later onset disorder. Marital ambiguity about the abortion decision can dominate the process and destroy a relationship. Any argument should be relegated to the couple's home, with a request to return when a decision has been made.
The importance of continuing follow‐up visits with couples who have terminated pregnancy for fetal defects cannot be overemphasized. In an important study on the psychosocial sequelae in such cases, White‐van Mourik et al.992 showed the long‐range effects. Displays of emotional and somatic symptoms 1–2 years after abortion were not rare and included partners. Although some couples grew closer in their relationships, separations, especially because of failed communication, increased irritability, and intolerance, were noted in 12 percent of the 84 patients studied.993 Marital discord in these circumstances has been noted previously.993, 994 At least 50 percent of couples admitted to having problems in their sexual relationship. In addition, many couples indicated changed behavior toward their existing children, including overprotectiveness, anxiety, irritability, and subsequent guilt and indifference (Table 1.9).992 Women with secondary infertility and those younger than 21 years of age (or immature women) had the most prolonged emotional, physical, and social difficulties.992 After a loss of a child, with or without an anomaly, between 10 and 25 percent of distressed parents have disturbed emotional stability and adverse mental and physical health effects.995 Anticipated grief experienced by mothers, especially those faced with a third‐trimester diagnosis of a lethal fetal abnormality, requires psychological help with preparedness. Empathy and sensitivity are critical at these intensely painful times and mature counseling and nonjudgmental support are vital to help parents cope.
Table 1.9 The frequency of emotions and somatic symptoms of 84 women and 68 men: overall and 24 months after terminating a pregnancy for fetal abnormality.
| Overall | 24 months after termination | ||||
|---|---|---|---|---|---|
| Women (%) | Men (%) | Women (%) | Men (%) | ||
| Feeling | |||||
| Sadness | 95 | 85 | 60 | 47 | |
| Depression | 79 | 47 | 12 | 6 | |
| Anger | 78 | 33 | 27 | 7 | |
| Fear | 77 | 37 | 46 | 17 | |
| Guilt | 68 | 22 | 33 | 7 | |
| Failure | 61 | 26 | 24 | 14 | |
| Shame | 40 | 9 | 18 | 4 | |
| Vulnerability | 35 | 0 | 18 | 0 | |
| Relief | 30 | 32 | 16 | 16 | |
| Isolation | 27 | 20 | 11 | 6 | |
| Numbness | 23 | 0 | 0 | 0 | |
| Panic spells | 20 | 0 | 5 | 0 | |
| Withdrawal | 0 | 32 | 0 | 13 | |
| Left out |
|