In 1992, David and Anne Andis had a little girl with anencephaly whom they named Emma. Although an ultrasound showed the possibility of anencephaly only 10 weeks into the pregnancy, David and Anne, who are not Catholic, made the decision not to abort but found little support or information on dealing with their family's crisis.

Although Emma lived only five days after birth, the Andises found that being able to know and love Emma during her short life was a meaningful and healing experience for them and their family. In response to their situation, they helped to start the Anencephaly Support Foundation to help other parents, families, and friends deal with the physical and emotional challenges of having (and losing) a baby with anencephaly. They now give such practical tips as the best kind of bottle to use if the baby can suckle and how to care for the skull defect as well as linking parents with other parents who have had children with anencephaly.

David and Anne are also spearheading an effort to establish a national birth defects registry and federal funding to study the causes of birth defects, hoping this information will lead to some answers and help prevent future babies from dying. Currently, low levels of the vitamin folic acid has been linked to the incidence of anencephaly but further research is considered warranted.

The Andises maintain an Internet site and also recently produced a videotape called The Anencephalic: A Suitable Donor? which deals with the controversial subject of using anencephalic infants as organ donors before death.

The Anecephaly Support Foundation can be reached by the Internet address http://www.asfhelp.com or by the toll-free phone number 1-888-206-7526.

—Nancy Valko