Finding Support Groups

Losing a child to anencephaly can be an incredibly difficult time. The grief that comes with the loss of a child, along with the confusion of the diagnosis and sheer incomprehensibility of the situation can be overwhelming. Attending a support group can be a way to work through those emotions and empathize with others who understand your situation.

Online Support Groups

A number of organizations hold online support groups, forums, and information portals for family members who have lost a child to anencephaly. Online support groups offer an easy and quick way to connect with others who are also experiencing loss. Be aware, however, that these online forums may not be the most private way to communicate; some groups may also be specifically pro-life or pro-choice.

The Compassionate Friends: This organization exists to aid parents and family members who are bereaving the death of a child at any age. Their site has comforting and helpful information on many aspects of grief.
Share Pregnancy and Infant Loss Support: Share is a group that exists to support parents and other family members who are grieving over the end of a pregnancy or death of an infant. The site addresses the different aspects of neonatal loss, early pregnancy loss, and stillbirth.
Anencephaly Blessings From Above: This is a Yahoo group that is specifically pro-life in its approach to anencephaly and bereavement.
Mourning Mommies: Mourning mommies is a portal for mothers of anencephalic infants with diverse views on reproductive rights; those on the forum or in the chat room may have decided to electively end their pregnancy, or they may have carried their child to term.

Local Support Groups

While using an online support group or forum can be a great way to work through the grieving process, it lacks some of the benefits that can be experienced in a local, in-person group. An in-person support group gives members the catharsis of speaking about their loss aloud with others. Members may also bond with others in the group and find a friend or neighbor in the community who they can depend on for help and understanding.

MISS: The MISS foundation exists to aid parents and family members who have experienced the loss of a child. They have local chapters and grief counselors around the country. Their website has helpful information for going through the logistical details of loss, such as planning a funeral.
The Compassionate Friends: This organization, which hosts an online support group, also has many local support chapters around the country.
Bereaved Parents of the U.S.A.: Bereaved Parents is a national organization open to all mourning family members, no matter the age or circumstances under which they lost their child. They have local chapters in many states.