arms, having lived longer than Dr. Garcia predicted and having seen her sister have a championship season with Melissa’s support and coaching.
This story illustrates the increasingly common situation in which a fatal congenital anomaly is diagnosed prenatally and the families await a birth that likely will be followed by death within hours or days (Figure 3.1c). Although many mothers and fathers opt for abortion when faced with such a tragic diagnosis, others—for religious, philosophical, or emotional reasons—choose to continue the pregnancy. A few innovative programs have recently been developed to provide extensive clinical information and preparation and emotional, spiritual, and practical support (e.g., help with coordinating services) to these families following diagnosis and through and after the infant’s death (see, e.g., Sumner, 2001). Most parents, however, have limited access to such information, preparation, comfort, and assistance from health care professionals. They may be able to rely on families and friends, and some discover parent-to-parent support groups or other resources.
Catherine and Kevin Riley were delighted to learn that they were expecting a new baby to join their 4-year-old daughter, Caitlin. In Catherine’s sixteenth week of pregnancy, she had an ultrasound examination. From the reactions of the technicians, she knew immediately that something was wrong, but no one was willing to tell her anything except that she should contact her obstetrician.
Told initially that the ultrasound results would be reviewed at Catherine’s next regularly scheduled visit in four weeks, Kevin called the obstetrician’s office to explain the extreme stress they were under and their need to know the results. The obstetrician explained that the fetus had anencephaly (failure of the brain to develop), that he had little training in managing such pregnancies, and that they should consider termination of the pregnancy “because the baby would not live.” The Rileys were unwilling to consider termination and requested a referral to a new obstetrician who specialized in high-risk pregnancies. The second obstetrician said that there was nothing to be done for mother or fetus and that if they did not want to terminate the pregnancy, he would see Catherine again when she was ready to deliver (in about five months).
Without access to regular obstetrical visits for further information and preparation, the Rileys drifted in fear, uncertainty, and grief during the following weeks and months. They sought information from the Internet where they found stories from other families about anencephalic infants who had survived “for years” but learned little to answer their questions