Our Anencephaly Journey

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What is anencephaly ?

Anencephaly is a congenital birth defect.
While the word anencephaly means « without a brain »,
it does not accurately describe a child with such a defect.
Children with anencephaly do have a brain, but it is
not fully developed. A baby with anencephaly is admittedly born with little scalp, cranium vault, or brain, but he or she does usually have part of the cerebral trunk.
Your baby's facial features will be complete; however, there will be an opening in the skull.
The size varies from child to child. If you look into the opening, you will see some brain tissue. Your baby's head can be
covered with a cap if you do not want to see this.
There may be other problems with your baby's body
(folded ears, cleft palate, open spine), but usually
your baby's body will develop normally.

Can a baby with anencephaly live?

During your pregnancy, your baby will receive
everything needed through the mother and so grows
well, just like any healthy baby. After birth, however,
vital functions cannot be sustained for long. Though
breathing is often spontaneous, it is not stable
enough.
Many babies with anencephaly live throughout the
pregnancy to birth. Still, some die prematurely while
others die during the delivery. This is called
stillbirth. Those who survive may live a few seconds,
minutes, hours, or even days. Sadly, the condition is
not correctable or reversible. Anencepahly is always
fatal.

Why does my baby have anencephaly?

First, it is not your fault. From the beginning of your
baby's development, before you even knew you
were pregnant, the nervous system (brain, spinal
cord) did not develop normally. It is thought that this
is due to a combination of genetic and
environmental factors.
Where do you go from here?
Your pregnancy can continue normally because your
health is no more at risk than it is during a normal
pregnancy. In a few cases, the baby is not able to
swallow the fluid in the bag of waters so too much
amniotic liquid (hydramnion) is produced. Doctors
can remove some of this excess fluid.
Although some parents choose to end their
pregnancies early and thus end their babies' lives as
well, babies with anencephaly can be born normally.

More information:
Please consider looking at the website

http://www.anencephalie-info.org

This site contains much information as well as
photos of babies with anencephaly, personal stories,
and the opportunity to be in touch with other

A carefully considered farewell
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,
Hold 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.

Will my next baby have a risk of anencephaly?

In most cases anencephaly is an isolated anomaly. It
is very unlikely that it should occur again in the same
family. Statistically, the rate of recurrence for a woman
who has already had a child with anencephaly is 4%.
It has been shown that the vitamin folic acid can
prevent up to 70% of of potential cases. So, women
who have had one baby diagnosed with anencephaly
should take 4 mg. of folic acid every day before trying
to have another baby. It is important to take this daily
because many pregnancies are unplanned.

http://www.cdc.gov/ncbddd/folicacid/index.html

Help and Information:
The Anencephaly Information website,
available in Spanish as well:

http://www.anencephalie-info.org/e/index.php

Support groups for families affected by
anencephaly:

Anencephaly Support

http://health.groups.yahoo.com/group/anencephalyblessingsfromabove/

http://health.groups.yahoo.com/group/Anencephaly_Support/

http://health.groups.yahoo.com/group/interruptedpregnancysupport/

http://www.misschildren.org
SHARE

http://www.shareatlanta.org

"Hope is not the expectation
that things will turn out well,
but the conviction that something is
worth working for,
however it turns out."
Vaclav Havel

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Friday, May 15, 2009

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