Anencephaly

Hello,

I am just wondering if anyone else out there has had a baby diagnosed with Anencephaly? It is a neural tube defect and is 100% fatal. My last 2 pregnancies have resulted in Anencephalic babies, and we lost them both at 12 weeks. The last one I lost was 2 weeks ago and I opted to deliver the baby so we could have some tests done on it and try and find out some answers, it was one of the hardest days of my life. I have done a lot of research on it and all of the research says that taking Folic Acid can reduce the chances of it happening.... well I was on 5mg of Folic acid everday for the last 6 months and it still happened!!!

Docs are now doing tests to see if my body is not absorbing the Folic Acid, still waiting results.

We are lucky to have 1 beautiful little boy who is now 2, but we desperatly want to give him a little brother or sister, hopefully one day we can.

Deb
:wall: :cry:

Hi Deb,

I haven't had a baby diagnosed with Anencephaly, but I just wanted to say how sorry I am for your losses! I really hope that you get the answers your need so you can give your DS a little brother or sister!

Welcome to BB! All the best in your journey! I really hope you get some answers!

Hi Deb, I've never been in your shoes but I can imagine it has been a devastating experience for you. I've heard that if you have repeated pregnancies where this happens you need to take much larger doses of folic acid than the standard recommendation, and basically take it for months before ttc and at least the first 3 months of pregnancy. There are quite a few websites about anencephaly where mothers talk about their experiences - if you google it you'll find tons.

Wishing you a positive future and the child you so desire.

Deb, I'm very sorry for your losses. Please don't think that your baby having anencephaly is a result of anything you did or didn't do. Folic acid does help to reduce the incidence of neural tube defects and it is true that the number of babies with those defects has dropped considerably since that discovery became known, but cases still occur and there appears to be more than one factor involved for those particular people.

It must be a devastating diagnosis to receive. I hope that the tests give you something to go on and that you feel able to try again for another child when you are ready. Once again, I'm so sorry.

I am so sorry to hear of your losses. I've not been in your position but i really hope you can get some answers.

:hugs: My sister has been in your shoes. She is away at the moment, I think she comes home tomorrow. I will email her and let her know ..

She now has a gorgeous baby boy :)

Aussienic,

I would love to hear from your sister, I know there is a lot of websites out there, but a lot of them are based overseas and about people who have given birth to their babies with anencephaly and how they dealt with the death afterwards, which helped knowing I wasn't alone, but it's not the same situation as mine, where I lost them at 12 weeks.

I'd love to hear from your sister if she is up to it.

Thanks heaps
Deb

Debmac. Rach gets home today I will ring her shortly and see if she can come visit here . It will more likely be tomorrow though,

:hugs: Debmac I am so sorry for your losses

my beautiful Katy Rose was diagnosed with anencephaly @ our 20 week scan at the time I knew nothing of the disorder, was sent to local hospital where they presumed I would induce then and there, I went home and made the heartbreaking decision to induce my baby at 21 week


I dont really know what you want to know but please feel free to ask away

:pray: your dream to give your little boy a baby brother/sister comes true

Rach75

I am so sorry for your loss of Katy Rose, it is a heartbreaking decision, the hardest we have ever made. I was the same as you with the first Angel we lost, I knew nothing of the disorder, I read a bit about it and tried to understand it but still didn't fully understand, then with our 2nd Angel, I had done everything I was supposed to do and it still happened, so I read a lot more and found out that there was nothing else I could really do to prevent it, I had done everything, it was just meant to be, which still breaks my heart to say.

We have had some test results back and apparently it is not a chromosomal problem, which is supposed to be best case scenario, so therefor it is not something between my husband and I, but there is something happening after we have conceived.... it is so difficult to try and think that everything will be OK when we don't really understand how else we can try and fix it.

I have booked in to see a gentic counseller at Monash Medical Centre, so I am hopeing that all the test results will be back by then and they can shed some light on what is happening.

Your little boy is gorgeous, you should be very proud. Thanks for your post.

Love Deb
:pray:

with your 2 angels did they do testing to tell you what sex they were, as I know it is much more common with little girls perhaps when TTC look into conceiving boy tricks timing diet etc

Hi Rach75
They didn't do testing on the first one, but with the second they are still doing it, they said they will be able to find out the sex in the results. The midwife did tell me that she thought it looked like a girl but wasn't sure. I didn't know that it was more common with girls, thanks for that.
Deb

dont quote me but I think it is like 9 out of 10 will be little girls :hugs:

feel free to email me on harrydog @ dodo .com.au minus spaces it is also my msn name :)

Hi,

So sorry for your losses Debmac, it must have been so difficult delivering your little girl. No personal experience of this, but my mum lost an anencephalic boy at 22weeks before she had me. She was 41 and the docs made a big noise about it being her age (this was in 1979) but she went on to have me at 42 (a month before she turned 43) perfectly normal and healthy.

One of my friends had her pregnancy ended at around 18 weeks as the baby had anencephaly, 2 years ago, she was told "it's just one of those things". I know that's no comfort as this is relatively rare and you've suffered it twice, but i think it's very important that you don't start to feel it is in any way your fault. It's not.

I hope you get some answers soon. Hugs.

Hana

Hi Hana,

Thanks for your post, sorry I have taken so long to right back but I have been trying to keep myself busy. It is always comforting to hear other peoples stories. It has been 4 months since we lost the last baby and last night I still broke down in tears and cried myself to sleep. I am seeing a natural fertility doctor who is helping me get my body back to premium health and then in a few months we might try again. I still feel sick to the stomach when I think about being pregnant and possibly having another baby with anencephaly, I thought it would get a bit easier but it hasn't really. I am sure though that it will happen for us one day and until then we have to think everyday we are so blessed to have our beautiful little boy, who of course, we both adore.

Take care and hugs to you.

Love Deb

good to hear from you Deb, :hugs: for still crying I still have days when the tears flow as for the chances of it happening again, nothing can predict this for us, it is something we will have to live with always, just make sure you are on 5mg folic acid it is supposed to help :hugs:

Aw, hun. My losses were nothing like as traumatic as yours (both very early, 1st tri) and i have DD now and i still get sad to think that they're not here to share in the family fun. It's completely normal and right to feel what you do.

:hug: to you darlin, things do get easier eventually.

Bec (Hana)

Hi Deb

I just wanted to write and say how sorry I am for the losses of your beautiful babies...

My MIL gave birth to an anencephalic boy when he was 40 weeks. I feel so sorry for her as in those days, you were told to "just get over it"...how brutally horrible. She's only now just started to talk about it...

The encouraging thing is, after the loss of her DS, she went on to have two wonderful boys...one of which is my DH!

I so wish you the very very best. In no way can I understand your pain, but please know that you are in my thoughts...

Take care chickie!