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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 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

   Shooting stars...

   ...and God will make him a cake

   My daughter was 17 when she got pregnant

 

My son had a baby with anencephaly

   Sinead

   Memories of Jason

 

My brother had a baby with anencephaly:

   Anencephaly thoughts from a Ĺsideways stakeholderĺ

 

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.

 

Links:

* 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 September 03, 2014