Box 1.4 Action checklist following stillbirth
Psychologic support is important for couples who have lost an offspring from any cause – a situation compounded by fetal or congenital abnormality.1024, 1025 The birth (or prenatal detection) of twins discordant for a chromosomal disorder is not rare, given the increased frequency of multiple pregnancy associated with advanced maternal age and the use of assisted reproductive techniques. Pregnancy reduction1026 (see Chapter 32), or the death of one twin, or delivery of both, evokes severely conflicting emotions that may well affect the mother's care for the surviving child.1027 Considerable psychologic skill must be marshaled by physicians if meaningful care and support are to be provided.1028
Supporting telephone calls from doctor and staff, and encouragement to attend appointments every 6 weeks, or more frequently when appropriate, are often appreciated by patients. Review of the autopsy report and discussion with reiterative counseling should be expected of all physicians. Frequently, parents receive an autopsy report by mail without further opportunity for explanation and discussion. In one study, 27 percent failed to receive autopsy results.1029 Providing contact with support groups whose focus is the disorder in question is also valuable. In the United States, the vast majority of these groups have combined to form the Alliance of Genetic Support Groups, which acts as a central clearinghouse and referral center.
Family matters
Beyond all the “medical” steps taken in the wake of stillbirth or perinatal death due to fetal defects are critical matters important to the family and its future. Active, mature, and informed management is necessary in these difficult and frequently poignant situations. Regardless of the cause of the child's defect(s), maternal guilt is almost invariable and sometimes profound. Recognition of a definitive cause unrelated to a maternal origin should be explained in early discussions and reiterated later. For autosomal recessive disorders or with even more problematic X‐linked disorders, maternal “culpability” is real and not easily assuaged. The fact that we all carry harmful genes, some of which we may have directly inherited, while others may have undergone mutation, will need in‐depth discussion. Mostly, it is possible and important to reassure mothers that the outcome was not due to something they did wrong. Where the converse is true, much effort will be needed for management of guilt1030 and shame, and for planning actions that promise a better future with ways to avert another adverse outcome.
Attention to details that have a very important role in the mourning process (see Box 1.4 checklist) include ensuring that the child be given a name and, in the case of the death of an abnormal fetus in the third trimester, that the parents' wishes for a marked grave be determined. As noted earlier, most caretakers feel that parents are helped by both seeing and holding the baby.1000, 1001, 1031 Although some may experience initial revulsion when the subject is mentioned, gentle coaxing and explanations about the experiences of other couples may help grieving parents. Even with badly disfigured offspring, it is possible for parents to cradle a mostly covered baby whose normal parts, such as hands and feet, can be held. Important mementos that parents should be offered are photographs,1032 a lock of hair, the baby's name band or clothing.1027, 1028 Ultimately, these concrete emblems of the baby's existence assist parents in the mourning process, although the desperate emptiness that mothers especially feel is not easily remedied.1033 Photos may also be helpful in providing comfort for other children and for grandparents. Parents will also vary in their choice of traditional or small, private funerals. Physicians should ensure that parents have the time to make these various decisions and assist by keeping the child in the ward for some hours when necessary.
Both parents should be encouraged to return for continuing consultations during the mourning period.1034 Follow‐up contact after pregnancy has ended includes calls, condolences cards, and recommendation for further bereavement counseling. This
