Anencephaly Member Introductions

Please take a moment to introduce yourself to the community. Everyone here has something to share about Anencephaly. For the discussion boards, we ask that you keep your full name and location private.

I’m 50 years old and have three kids. Courtney died of anencephaly in 1979. Johnny was born in 1980 and Christie was born in 1983, both healthy.

I have three grandbabies.

I also have hydrocephalus.

Mother to two babies who had anencephaly.

In 2003 I had a son, Tobie, born with Anencephaly. We were unaware of his condition until his birth. He lived 5 days. We miss him SO very much. I am currently pregnant for the first time since Tobie. We recently had an ultrasound at 14 weeks and everything appears to be o.k…

Mother of a baby with anencephaly

Hi, my name is Karla, from Texas. I had a child with anencephaly. I share the same pain and sorrow many of you do. My second child, Kamila, was diagnosed when I was about 20 wks. pregnant almost two years ago. At first I didn’t know what to do or think. Even though I work on the medical field, I had never heard that word before.

When the ultrasound tech. told me there was something wrong with my baby, I became numb. I did research on the diagnosis, read stories and I sill could not understand what was happening. Like many my doctor and many other people recommended the termination of pregnancy.

At first, I thought it was a good idea, but them my mother spoke some sense to me and I realized that for as long as she was inside of me she was alive. She did not move much but I knew she was still alive. I had agreed with my husband and the doctor to carry my child to full term and I would be induced of my 40th week. Every single day I would pray to God, for him to decide when it was the time for my baby to be born, because even though I was going to carry her to full term still it was my decision when to be induced.

I am greatful to the Lord because he answered my prayers, on June 16, 2005 at about 27 wks. of my pregnancy my water broke, by the time I got to the hospital I was about 5cm. dialated and my baby’s heart beat stopped shortly after. When she was born I could not make myself see her or carry her in my arms. I had seen a few pictures of babies born with this condition that in my mind she looked one way and I did not want to face the fact that she was different.

Now I regret that decision, I knew back then I would. I still can’t look at the picture they took in the hospital.

If I can help anyone please message me on my profile. Any questions anyone may have I will be more than happy to answer.

One doctor told me that this happened to me because “God is trying to prepare me for something better” what ever that means, this words are stuck in my mind and I know I will find out soon enough.

Hi…my name is Kathy (but my family calls me ‘Bean’).  My daughter, Jeanne, was born to heaven on March 29, 1996.  Losing her was the hardest thing I’ve ever had to deal with in my lifetime.  I was then blessed with a son in July of 1997 who, thank God, is a healthy and happy boy.  He is the light of my life!  To those of you who have lost a baby, there is hope that you can go onto have a healthy child.  I look forward to getting to know some of you:)

My first daughter Ceilidh was born still due to anencephaly at 42 weeks

im 27 and will give birth to ann laurice this june 2007.she has anencephally.

Dear Aimee,

how are you doing?

Thinking of you and Ann Laurice,


I am carring a baby with anecephly and am due on July11, 2007.

I have three beautiful Healthy Children and one Beautiful Little Boy Angel “Charlie” born to anencephaly.

We lost our only son 2 years ago to this NTD. I’m always interested in hearing from others who have experienced the same thing or offering support to “new” people that have unfortunately had to go through it as well.

Hi, my name is Katie and in May my daughter was born with anencephaly. I would really like to talk with someone who has been there and also with someone who has had subsequent pregnancies, my husband and I are discussing ttc again and its nerve wracking, i guess i just need a friend?

Our first child died of this condition. Second is healthy and strong. 2 years old now. First time parents should stick with it. Things this wonderful don’t go without some hardache along the way.

I lost my first Grandbaby to anencephaly in 1996. His name is John Garnet. I know what a struggle it is to come to terms with losing a baby from a Grandma’s point of view. Praise God, I know have two healthy Grandson’s and two healthy Granddaughters. I’d love to offer help, understanding and compassion to others faced with thsi situation.
God bless,

My son died with Anencephaly in March 2007.

I have just found out that my secound baby has an Anencephaly. I am Japanese and am not really good at English, but I would like to join this community to keep my piece together…

My name is Kat, I have 3 healthy children ages 11,8, and 7 and my 4th child was stillborn with anencephaly and IUGR at 21 weeks pregnancy. I really would like to connect with others that have had the same tragedy happen to their family. I could really use the support right now. It hurts.
I am 30 and never expected my 4th child or any of my children to every die, especially in utero.

I need friends! i need somebody to talk to about my little girl.