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. (Source: http://www.anencephaly.info/pdf/anen-info_2006-USA.pdf )

Symptoms

  • Anencephaly is diagnosed through ultrasound or after birth

Treatments

  • 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. While there have been some children that have lived months or years with Anencephaly it is very uncommon. Sadly, the condition is
  • not correctable or reversible. Anencephaly is always
  • fatal.
  • Stories of Anencephaly

    STORY
    Anencephaly stories
    In late February of 2014, I found out I was expecting my second child. On March 21, 2014 I had my first ultrasound. I was 8 weeks pregnant. They told me everything looked good so my next ultrasound wouldn't be until June 13, 2014. That would be my 20...
    Anencephaly stories
     Hello my name is Elisia, I am 30 I am an ovarian cancer survivor I have PCOS and I was told without medical he having a child wasn't possible, I was 25 when I went into remission. I had accepted the fact children were not an option. On August 19th,...
    Anencephaly stories
    First ultra sound November 18, 2016 We were 7 weeks and 3 days    December 16, 2016  We were 11 weeks 3 days we had our second ultra sound - during our routine ultra sound we were able to see our baby moving around my tummy so ...
    Anencephaly stories
    My daughter, Bryli, was diagnosed with Acrania-Anencephaly in utero April 1, 2016. She was born August 10, 2016 and lived a beautiful 35 minutes before peacefully passing away, and returning home to her Heavenly Father. 
    Anencephaly stories
    I am an advocate for Anencephaly Awareness and run a group on Facebook, Anencephaly Hope I provide support and care packages for families and specially made hats for babies with Anencephaly. 

    Tell your story and help others

    Tell my story

    View more

    Anencephaly forum

    QUESTION

    Ask a question and get answers from other users.

    Ask a question

    View more

    Statistics of Anencephaly

    1 people with Anencephaly have taken the SF36 survey. Mean of Anencephaly is 1025 points (28 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

    View more

    Find your symptoms soulmates

    From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

    Symptoms soulmates

    Add your symptoms and discover your soulmates map

    Soulmates map