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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.
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

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.

External links:
Grandparent to Grandparent, a booklet by and for grandparents whose grandchild has died. By clicking on the link, the booklet will be downloaded automatically.
Support grieving family member or friend: 6 principals
Communicating with Parents: Avoiding Blame and Judgements


My daugther had a baby with anencephaly

   Shooting stars...

   ...and God will make him a cake

   My daughter was 17 when she got pregnant


My son had a baby with anencephaly


   Memories of Jason


My brother had a baby with anencephaly:

   Anencephaly thoughts from a 'sideways stakeholder'


My sister had a baby with anencephaly:

   When Love is Withheld From Us


My sister-in-law had a baby with anencephaly:

   Samuel's saga


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, told by his midwife

   Providing support as a midwife

   Working in respect as a midwife


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.




Last updated March 12, 2023