Resources for family and friends affected by anencephaly

Eddie,

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.

Love, Grandma

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 don’t 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

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.

Links:

* Grandparent's Grief Support and E-mail Exchange

* Anencephaly Support For Family and Friends
A support group for family & friends of loved ones who have lost or are carrying a child with anencephaly. Their loved one has a difficult decision to make, to end the pregnancy early or to carry to term. Family and friends can only 'be there' as that decision is made. This group is here for those family and friends, a safe haven to ask any questions about fears and beliefs that they have. We are not here to judge anyone on the decision that their loved ones have made. We are here to listen, support and help family and friends through a difficult time.

* 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

* The story of Gabriel Aaron, written by his Grandpa

* Brochure for family and friends:"Ways to support a parent whose baby has died"

* Brochures for Grandparents:

- http://www.nationalshareoffice.com/docs/trifold_grandparents.pdf
- http://www.shareatlanta.org/grandparentsgrief.htm
- http://www.compassionatefriends.org/Brochures/grandch.htm
- http://www.arc-uk.org/publications/grandparents.html

* Books for grieving grandparents

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 September 8, 2009

Resources for family and friends affected by anencephaly

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

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