Anencephaly Member Introductions


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.



I’m a single first time mom. My daughter was diagnosed with anencephaly when I was about 2 1/2 months pregnant. I’m due this fall and I feel that my time with my baby is running out quickly. I’m wanting to connect with anyone who knows my feelings. My family is a great support system for me but I feel that they just can’t understand the fear I have.



Hi everyone. Our baby just passed away from anacephalie on Feb. 27, and I was also looking at getting in touch with someone to maybe just chat.

Please message me via my profile to chat.

Also if you’ve just found out you are diagnosed I will be glad to give any information I have, god bless.



Hi poopsie,thebeanooo,cdigerlando,

We lost our little one because of Anencephaly. Can you please suggest what are the precautions we need take for our next one.

Thank you



We were told take an increased amount of folic acid, will decrease chances of another case of anencephaly. That is the only thing we were told, to start taking it when trying to conceive, and continue through birth.



My sister was told the same thing. She is terrified because the doctors
told her that having one child with anencephaly increases the chance of
her having another child with anencephaly approximately 10 times.
However with the rarity of anencephaly, it is still a very low chance.
She was also given folic acid to reduce the risk. Does anyone know if
there is a group performing research on the causes of anencephaly. If
so, I would like to make a donation in my nephew’s memory.



Yes we were told the same, we are at increased risk but it would be very rare for it to happen still. We will try to conceive again, and I think the only time I’m going to be scared is when we have our first ultrasound again. We were told to wait 6 months or so to start trying, but double/triple the folic acid intake when we do start trying.



My name is Jaimey and I am 29. I found out 3 weeks ago that my son who is 19 weeks (now) gestation has anencephaly. I have come to terms with it to the best of my ability I think but would like to talk to others who have induced around the 25-27 week mark which is what our plan is at this point. I am in Oregon, if anyone else is that is even better. Its so hard to find anyone else who has had this much less close by. thanks!



Hi, my name is Diona, and I’m from Singapore. My daughter was diagnosed with anencephaly a week ago during her 20 week scan. We are in the process of praying for direction, as doctors have asked us to terminate the pregnancy, but we’re thinking of carrying her to full term. There has been no found/recorded instances here in singapore where any anencephalic baby was carried to full term, it seems every case has been terminated early.



Hi Diona, I want to start off by saying that my heart goes out to you. I was in your shoes not long ago. I wish I could say something to make your decision easier but I can’t. All I can tell you is to follow your heart. Don’t listen to what others think you should do(including doctors). I tried to carry my angel Ella full term in order to donate her organs but continued to hit a brick wall with centers who were not willing to accept her organs. I terminated my pregnancy at 6 months and it was the hardest choice that I have ever had to make. They took Ella Csection and I got to spend an amazing hour with her. My family was there to kiss her and say their hellos then goodbyes. It was heartwrenching but I wouldn’t have done it any other way. I did for many months question what I did. I continued to doubt my actions of letting the doctors take her early but I now think of it as I might not have had that one hour to enjoy with her if I would have gone longer.
I can say that my faith was tested during that time but I am a stronger person and a better mother because of her. I do believe everything happens for a reason and God only gives you as much as you can handle. I feel blessed to have had her in my life for such a short period of time. This is my story and I know it won’t help with your decission but I do know it always helped me to hear others stories when I was going through it. If you need anything or have any questions please feel free to contact me.

Crystal Johnson-Knowles
Sent from my iPhone


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