Anencephaly Information

Resources for grandparents, family and friends

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 can I do to help the parents?	What family and friends can do for parents of a baby with anencephaly
What can I do for myself ?	What you can do for yourself when a family member's or friend's baby has anencephaly

My daughter had a baby with anencephaly:	Shooting stars
	....and God will make him a cake
My son had a baby with anencephaly	Sinead
My brother had a baby with anencephaly:	Anencephaly thoughts from a ‘sideways stakeholder’
My friend had a baby with anencephaly:	Jamie about Malachi
My patient had a baby with anencephaly:	One Midwife's Story about anencephaly
	The story of Ira, a baby with anencephaly
	Midwifes and anencephaly

How I dealt with family and friends	Azariah's story

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 http://www.shareatlanta.org/grandparents.htm

* Anencephaly Support For Family and Friends http://health.groups.yahoo.com/group/AnencephalySupportforFamilyandFriends/
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 Grandparentshttp://groups.yahoo.com/group/AnencephalySupportForGrandparents/
This group is for grandparents who have lost a grandchild to anencephaly at any stage

* AGAST Alliance of Granparents, a Support in Tragedy http://www.agast.org

* The story of Gabriel Aaron, written by his Grandpa http://www.geocities.com/anencephalygabriel%40sbcglobal.net/papameehan.html

* Brochure for family and friends:"Ways to support a parent whose baby has died" http://www.nationalshareoffice.com/docs/trifold_familiy_friends_coworkers.pdf

* 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 : http://www.shareatlanta.org/grandparbooks.htm

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.

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