Abstract

Anencephaly is a rare condition in which in a baby develops without a major part of their skull and brain. It always results in the death of the baby either before or after birth. This can be diagnosed from 12 weeks of pregnancy and many will choose to terminate the pregnancy. This was not an option in Ireland until 2019 so skilled experience in caring for parents who continued their pregnancy developed in the maternity services. We examined the in-depth experience of four mothers whose babies were diagnosed with anencephaly to understand how they adjusted and grieved and to identify ways of optimising their care. We noted that parents progressed through profound shock and rejection to a loving reattachment with the baby they now knew was coming. All spoke of how their rich experience of growth and healing had changed their lives for the better. This was facilitated by sensitive care from the healthcare professionals that accommodated parents’ grief and shock and acknowledged the mother-baby relationship. Continuing a pregnancy complicated with anencephaly, which is a fatal fetal anomaly may be a healing and positive alternative to early termination of pregnancy for some women.