anencephaly.

mvanderc · May 2011

anyone have a child that was diagnosed with this? we just found out at our 20 week ultrasound that our little girl has this.

of course we are devastated, but we chose to continue on with our pregnancy. we lost our first child at 12 weeks, and then had a daughter who is now 20 months. we would have given anything to have more time with our first.

i know it's going to be a rough road. wondering if anyone else had to walk it.

this is our story so far if you wanted to read. we're trying to stay positive for our toddler, but my heart is broken.

carrieandtim · May 2011

I am so, so sorry. I do not have experience, but there is an amazing woman on PGAL who also continued with their pregnancy. Let me go tell her you're here.

kate626 · May 2011

I am so sorry to hear that your child has ancephaly. Our daughter Emily did not have this but we also found out at our 20 week anatomy scan that she would not be able to survive outside of the womb due to complications of turner syndrome. We did choose to continue with the pregnancy and Emily lived until almost 22 weeks. we do not regret our decision and love every extra second we got with our beautiful daughter.

I know we dont have the same situation but if there is anything I can do to help you get through this please let me know.

hugs&hissyfits · May 2011

I'm so very sorry! I don't have any experience with this but my IRL friend pennynjon now on PGAL has. She carried her sweet Ella to term and had 20 wonderful hours with her and as hard as it was I know she wouldn't trade that time for anything. She is an amazing person and I know she would be a great help to you.

pennynjon · May 2011

Badge Warning

I am so so sorry that you got this news. My heart breaks for you. We found out right at 17 weeks that our first child, Ella, had anencephaly. We were devastaed too. We chose to carry to term. We wanted every minute with her that we could have. Ella was born last May. I made it to 40 weeks 4 days. She lived for 20 hours after she was born. She was such a blessing. And we are so thankful for every moment that we got with her. The time we had with her during my pregnancy and after she was born made all of the pain so worth it. I will be praying for you and your family as you go through this. I will PM you my email address. You can PM me or email me anytime you need someone to talk to, or if you have any questions. There are support groups online and blogs of moms who carried to term that you may find helpful. Let me know if you want any of those. ((huge hugs))

mvanderc · May 2011

thank you girls.

i really need some place i can talk to other moms. ones who know what i'm feeling. my emotions are all over the place, and i know dh doesn't relate to all of them.

thank you for sharing your stories, and for being here.

pennynjon · May 2011

https://groups.yahoo.com/group/anencephalyblessingsfromabove/

This is the link to a support group that I joined online. It is for moms who carry to term with anencephaly. The ladies there have been so supportive and understanding. You have to request to join. Then they approve you and you can start posting.

ryanchrissy · May 2011

I am so sorry to hear this. I was pregnant with twins last year and found out that one of them had anenecephaly. They were born last February and my baby boy Cayden lived for 3 days. I have a blog that I write on often with pictures and helpful websites and such. it is: Caydenryan.blogspot.com. Please feel free to email me with any questions or just to talk. You will not regret your decision to carry your beautiful baby. Sending hugs your way during these hard days.

Chrissy

mvanderc · May 2011

thanks chrissy. 3 days? wow. i'll have to check out your blog.

charlottester · July 2011

Hello, mvanderc-

I don't typically respond to these posts (so I'm very new at this.) I'm so sorry to hear that you're going through this experience. I'm currently 37 1/2 w with our anencephalic son, and waiting for his arrival! I noticed that you're currently living in Korea (I'm actually Korean, and have visited many times so I understand the crazy traffic, cultural differences, etc...). I've read your story and am so touched by your courageous decision to care for your little girl until she decides to go to Heaven.

I don't know what you have access to there, but was wondering if you needed bereavement supplies or things to help you along your journey. If so, I'd be happy to send you some things. I don't know how to get in touch with you through this website (is there messaging or anything like that?) So here's a link to my facebook account if you'd like to communicate that way. facebook.com/charlottetittle

I've been spoiled here in my community with ample support and resources, so I hope I can share some of that information with you. The worse possible feeling is probably to be surrounded by people who don't understand what you're going through. If I don't hear from you, I understand!

Hope all goes as well as possible during the next few months...

Best,

Ch

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