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Which advice would you give to someone who has just been diagnosed with Anencephaly?

See some advice from people with experience in Anencephaly to people who have just been diagnosed with Anencephaly

Anencephaly advice
1 answer
Anencephaly! To be told that your baby has this birth
defect is heartbreaking and shocking. There is no
other way to describe this terrible news.
Everything you wanted for your baby­­your hopes
and wishes­­are gone with the news of this fatal
defect. Nothing will ever be the same again. Your
pain and grief are very real and very normal. You
will not grieve more if your baby lives longer or less if
your baby dies very soon. Grief is intense and can't
be avoided or lessened. It may, however, be
increased. In our experience, we have never heard
of any parents who carried their babies as long as
they could who regretted that decision, but we have
heard of parents who ended the pregnancy early
and did regret that decision very much.
A carefully planned farewell to your child is the first
step you can take to deal with that grief.
Take the time to prepare for the birth and death of
your baby. Your baby deserves to be welcomed in
love and to be given a dignified farewell. Your child
is a small human being even if he or she cannot live
long.
You can give your baby a name and hold and cradle
your baby in your arms when born even if your baby
is stillborn. You can admire and cherish your baby. If
you cover the opening on the head with a cap or hat,
you can focus fully on your child.
Don't forget to take photos and footprints; these will
be priceless memories.
Unfortunately, burial or cremation costs are not
covered expenses in the USA for our babies.
But having even a simple memorial ceremony is an
opportunity to say a farewell to your baby. The pain
felt at the time is very intense, but you will feel that
pain no matter what. For closure or relief of grief, it
can be important to have this ceremony and some
place to feel your sadness. This can be a burial
place, a memorial garden, even a small memory box
in your home where you put photos or other things
that remind you of your baby. This is an official
testimony to your child's reality because your baby is
a real human being despite the deformity. If your
baby is cremated, you may wish to pick a special
place to scatter the ashes, a place of comfort and
meaning for you.
(Source: http://www.anencephaly.info/pdf/anen-info_2006-USA.pdf )

Posted Aug 16, 2017 by Lisa 1685

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