What Is Anencephaly?
Anencephaly is a neural tube defect caused by the improper closure of the embryonic neural tube during the third or fourth week of pregnancy - usually well before a woman even knows that she is pregnant. Anencephaly is incompatible with life.
The neural tube is a narrow tube that folds up and forms the brain and spinal cord of the embryo. A neural tube defect can occur at any point along that channel.
Neural tube defects are classified as "open neural tube defects" and "closed neural tube defects."
Other neural tube defects include encephalocele and spina bifida.
Anencephaly is an "open neural tube defect" which is a neural tube defect that is not covered by skin or hair, like spina bifida, another neural tube defect. Anencephaly occurs when the cephalic, or head end of the neural tube, closes improperly. Infants with anencephaly are born without a major part of their brain, skull and scalp. These infants are born without a forebrain and a cerebrum. The remaining tissue is often exposed; uncovered by skin or bone.
A baby born with anencephaly is typically unconscious, blind, deaf and unable to feel pain. Even if the baby has a functioning rudimentary brainstem, without the cerebellum, they will never gain consciousness.
Symptoms of Anencephaly:
- Absence of bone covering of the back of the head
- Folded ears
- Absence of bones around the front and sides of head
- Cleft Palate
- Congenital heart defect
- Basic reflexes but no consciousnesses
- The baby cannot survive
Diagnosis of Anencephaly:
Anencephaly can be diagnosed prenatally or at birth.
Prenatally, the diagnostic tests used to diagnose anencephaly include these:
- Alpha-fetoprotien
- Amniocentesis
- Ultrasound
Causes of Anencephaly
There is no one specific known cause of anencephaly.
The mother's diet and genetic factors may play a role; however, scientists believe there are many other factors involved.
Ninety percent of couples who have a child with anencephaly do not have a family history or genetic basis for anencephaly.
Studies have shown that folic acid significantly reduces the risks of neural tube defects. It is recommended that all women of child-bearing age take 0.4 mg daily folic acid supplements.
Instances of Anencephaly:
CDC estimates that each year, about 1 in every 4,859 babies in the United States will be born with anencephaly.
Genetic counseling may be recommended for future pregnancies to discuss the risk of recurrence.
Is There Treatment for Anencephaly?
There is no cure or treatment for anencephaly. Comfort and palliative care are provided for the baby and grief counseling is provided for the family.
Seventy-five percent of babies with anencephaly are stillborn and the remaining twenty-five percent die shortly after birth.
Related Resource Pages on Band Back Together:
Resources for Anencephaly:
Share: Pregnancy and Infant Loss Support, Inc. This non-profit organization is to support those whose lives have been touched by the tragic loss of a baby through stillbirth, early pregnancy loss, or within the first months of life.
Now I Lay Me Down To Sleep: Offers free professional remembrance portraits to allow families to honor and cherish their babies, and share the spirits of their lives. These volunteer professional photographers come into the hospital and work with bereaved families to take professional portraits of their babies and families as keepsakes to be treasured, always.
ASFHelp Information on anencephaly, coping post diagnosis, and assistance finding support groups.
Children's Rare Disease Network: is a collaborative project to share and advance knowledge about rare diseases among medical professionals, researchers, patients, parents, advocates and the general public.
Anencephaly.net This site contains links to information, memorials, grief support, and news.
The Compassionate Friends: They provide support to families after the death of a child.
