Anencephaly

Laci Bodin
 What is Anencephaly?
It is a defect in the closure of the neural
tube during fetal development. The neural
tube is a narrow channel that folds and
closes between the 3rd and 4th weeks of
pregnancy to form the brain and spinal cord
of the embryo.
 What occurs.
The cephalic or head of the neural tube fails to close, resulting
in the absence of a major portion of the brain, skull, and scalp.
Infants with this disorder are born without a forebrain (front part
of brain) and a cerebrum (thinking and coordinating part of the
brain).
The remaining brain tissue is often exposed.
A baby born with anencephaly is usually blind, deaf,
unconscious, and unable to feel pain. Some can be born with a
rudimentary brain with if the lack of a functioning cerebrum
permanently rules out the possibility of ever gaining
consciousness but reflex actions such as breathing may occur.
If the infant if not stillborn, then he or she will usually die within
a few hours or days after birth.
 THE CAUSE IS UNKOWN!!
Although it is thought that a mothers diet
and vitamin intake may play a role,
scientists believe that many other factors
are also involved.
Recent studies show that addition of folic
acid to the diet of women of childbearing
age may significantly reduce the incidence
of neural tube defects. (0.4 mg daily)
 Folic Acid
Folate and folic acid are forms of a water-soluble B vitamin. Folate occurs naturally in food.
Folate is necessary for the production and maintenance of new cells. This is especially
important during periods of rapid cell division and growth such as infancy and pregnancy.
Folate is needed to make DNA and RNA, the building blocks of cells. It also helps prevent
changes to DNA that may lead to cancer
What foods provide folate?
Leafy greens such as spinach and turnip greens, dry beans and peas, fortified cereals and
grain products, and some fruits and vegetables are rich food sources of folate. Some
breakfast cereals (ready-to-eat and others) are fortified with 25 percent or 100 percent of the
Daily Value (DV) for folic acid.
Some situations that increase the need for folate include:
pregnancy and lactation (breastfeeding)
alcohol abuse
malabsorption
kidney dialysis
liver disease
certain anemias.
 Suggestive screening test
It is common to screen a womans blood for
alpha fetoprotein.
A high level of AFP suggests a fetus with a
neural tube defect.
Amniocentesis can also help detect neural
tube defects by measuring AFP.
There is no cure or standard treatment for
this birth defect.
 Prince Brandon
Prince may sound like an arrogant title for us to use.
What other name can you give to someone who came
into the world and left without ever making a sound,
but changed so many lives forever! Brandon was a
surprise to his daddy and me. We were married for less
than 5 months when we discovered that we were going
to have a baby! Since I had been told that I was not
going to be able to conceive (due to health problems
on my part), I was worried about the health of our baby.
The technician began the ultrasound, commenting on
how tiny I was carrying. She mentioned how she
couldn't see the baby well and would have to get the
doctor. The doctor came into the room and after only a
minute, he said, "there is no good way to say this. Do
you want to talk here or in the office, because there is
something wrong with your baby." Jeffrey started to
cry and squeezed my hand. I wanted to know
immediately, while I lay on the table with my baby on
the screen. He said, "Your baby has a birth defect like
you were talking about with the counselor. The baby
has anencephaly. There is a 100% fatality rate with this
defect." I remember those words exactly. I always will.
This is the moment my life changed forever. It is the
moment I became a mourning mommy and the moment
I discovered my anencephaly blessing from above. By
this I mean, that instead of preparing for my son's life, I
began mourning his inevitable death.
Sunshine and Katelyn
On January 8, 2000, my husband, Josh, and I found out
that I was pregnant for the first time. Our due date was
September 15, 2000,
2000, nine long months away. The
doctors office scheduled me to go in for an ultrasound
first thing Monday morning, February 14. We went in
and the ultrasound technician found that we were
having twins---WOW! It was a great Valentines Day
gift. We decided to have the triple-screen pregnancy
testing done, because if they could detect problems,
sometimes they can help the babies before they are
born. I got a call from the doctors office that my test
came back high. They then scheduled me for a level II
ultrasound. I was 17 weeks along on April 10, when we
went to our ultrasound. Our ultrasound technician
scanned Baby B first. Everything looked really good.
She told us we were having two girls. When she went
to scan Baby A, she talked for a little bit and then got
really quiet. She went to get the doctor, and I became
certain that something was very wrong. The doctor
proceeded to tell us news that changed our lives
forever, that our Baby A had anencephaly. This is a
fatal neural tube defect where the brain and skull do
not develop because the neural tube failed to close 28
days into the pregnancy. We were in total shock to find
out that nothing could be done for her. They robbed us
of all hope for her that day. I found myself wishing that
she could have had anything except a defect that
would not allow her to live.
 Are you related?....
Couples that have had a previous child with a
neural tube have a 1 in 40 chance of recurrence.
More distant (second degree) relatives to an
individual such as nieces or nephews would have
a 1 in 200 risk of a neural tube defect.
Third degree relatives such as cousins have a 1 in
400 risk for a neural tube defect.
And fourth degree would have a risk similar to
general population 1 in 670.
 Support groups
The antenatal Genetics Clinic at the Alberta
Childrens Hospital will provide counseling
and arrange prenatal testing if requested by
the family or family practitioner.
There are many websites that give access
to support groups and other mourning
parents.
Health.groups.yahoo.com
www.climb-support.org