Resources for family and friends affected by anencephaly
In your uniqueness and special beauty
child of my child, I love you so.
Like your mother, you grabbed my heart
with baby fingers to never let go.
Betty Goff McCaffrey
When parents learn that their baby has anencephaly, it is a huge shock. But they are not the only ones affected by the
baby's diagnosis. Grandparents, other family members and friends are suddenly in an entirely new universe.
Nothing prepares them to know how to deal with the imminent death of a much-loved and wanted child, but nothing prepares their family and friends either to know how to be around parents who suddenly begin to grieve for a baby that has not yet even been born. They want so much to help, but they themselves are now in grief for a grandchild, niece or nephew, or a dear friend's child. They are afraid that they will say or do the wrong thing. They want to give support, but often don't know to begin or what might be the best way to be supportive without being burdensome or overbearing.
We could just put up a long list of advice: "Do this but donĺt do this." It would be a start, but so often it is the experience of others families and friends that teach us more than a dry list of recommendations which may or may not fit our own situations and experiences.
In the following articles, we allowed parents, grandparents, family members and friends to speak about their experiences.
What family and friends can do for parents of a baby with anencephaly
What you can do for yourself when a family member's or friend's baby has anencephaly
Please don't hurt me a mother speaks about the very special journey of carrying twins when one twin is not expected to live after birth
My daugther had a baby with anencephaly
My son had a baby with anencephaly
My brother had a baby with anencephaly:
My sister-in-law had a baby with anencephaly:
My friend had a baby with anencephaly:
My patient had a baby with anencephaly:
How I dealt with family and friends
If a family member or friend had a baby with anencephaly and you want to share your story with us, just e-mail us, we would be more than happy to add a page for you.
* Anencephaly Support For Grandparents
This group is for grandparents who have lost a grandchild to anencephaly at any stage
* AGAST Alliance of Granparents, a Support in Tragedy
* When a Grandchild dies
* To our family and friends: our grief experience shared
NB: The content of the linked websites do not necessarily reflect the opinions of Anencephaly Information and inclusion on this page does not constitute a recommendation or endorsement by Anencephaly Information.
Last updated January 7, 2012