Anencephaly is one of the most common neural tube defects. It occurs early in the development of the unborn infant when the neural tube fails to close, and according to the Centers for Disease Control and Prevention (CDC) may affect as many as one in 4,000 pregnancies per year. Because there is no treatment for these infants, and the condition is catastrophic and renders the child without the possibility of ever gaining consciousness, many women choose to terminate the pregnancy when they receive the diagnosis.
There are women for whom this is not an option because of their religious beliefs. The Catholic Church is one faith group that does not endorse termination and supports carrying the fetus as close to term as possible without endangering the mother.
K.P. came to us for care during her 4th pregnancy. She found out she was carrying an anencephalic child. Her previous children were all delivered via cesarean at our hospital, and her physician had urged her to terminate this pregnancy to spare her the possible dangers of another cesarean. She was unwilling to do this because of her faith and was praying for a miracle for this child or at least that his life would be honored no matter how short.
She approached me about her wishes for Will's brief life, including having her priest present at the birth to perform extreme unction, recovery in her patient room with her other children and parents present to share Will's brief life, and for memories and mementos to be made of their time together.
Some staff were distressed by the additional danger they felt the mother was exposing herself to, but others were glad to help support this family at this difficult time. We worked with K.P. to arrange to fulfill her desires. K.P. has been able to move on from this experience with the help of counseling, her faith community, and the feeling that she did the right thing by Will. We learned so much and revitalized our Bereavement Committee after caring for the P family.