Anencephaly is one of the most common neural tube defects.  It occurs early in the development of the unborn baby when the neural tube fails to close, and according to the CDC, and may affect as many as 1 in 4,000 pregnancies per year. 

Because there is no treatment for these infants, and 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 doesn’t indorse termination, and supports carrying the fetus as close to term as is possible without endangering the mother, to honor the child’s life, for as long as possible.

Case:

K.P. came to us for care during her 4^th pregnancy.  She found out she was carrying an anencephalic child.  She had had all of her previous children delivered via cesarean section at our hospital, and her physician had urged her to terminate this pregnancy to spare her the possible dangers of another c/section.  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 the possibility of having her priest present at birth to perform extreme unction at the time of birth, and also requested to be recovered in her hospital room so that her other children and extended family could be present to have whatever time possible with “Will”.  She had decided to name this boy Will, to signify her acceptance of God’s Will.

Conclusion:

Though there were staff who were distressed at the additional danger they felt the mother was exposing herself to, there were those who were glad to help support this family at this difficult time.  We worked with K.P. to arrange for her priest and extended family to be present for Will’s brief life, and for memories to be made, through photography, molds of his feet, a lock of hair, foot prints, and especially through the brief time they had together.   K.P. has been able to move on from this experience, with the help of counseling, and her faith community, and the feeling that she did the ‘right’ thing by this little one.

Keywords:

 anencephaly, bereavement, cultural sensitivity, Catholic