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!

Hi there...

I lost my darling Savannah Mae on 08/07/06 last year to anencephaly and was induced at 20.2weeks gestation.

I am fast approaching her 1st birthday, and am currently pregnant with her sister (due in September)

I took 10x the normal dose of folic acid 2 months prior to falling pregnant this time.

We had the all clear for all NTDs (spina bifda and everything) at my 20 week scan in May just gone.

I am finding, dealing with her death particulary hard because I am pregnant one year on with a healthy baby girl.. but at the same time, think myself so lucky to be given another chance at having a healthy baby..

I have searched the web high and low for ppl who have been through what I have...

Anyone who would like to talk more about anencephaly with me feel free to add me to MSN or PM me :)

I have sent my sister a message to reply to your other thread. I assume she will see it in the morning,, :hug:

Sorry for your loss

Lori I have replied to your other post :hugs:

Hi Rach,

Great to hear from you too. I know its normal to still cry and I am glad that I do, because it does help. I am definitely feeling the best I have health wise in ages, so maybe thats a good sign. I have been taking magnesium, which I have just found out is also something that can be lacking in women with anencephalic pregnancies. I am still on the 5mg of folate and have just had a test to check my folate levels so we will see how that goes.

How are you going? How is your little boy?

Love Deb

XYGMUM

Hello,

I am so sorry to hear your story, it is just heartbreaking and I know how you must feel with the anniversary approaching, my thoughts are with you. Luckily you have already had your scan this time and know that all is well, at least now you can start to enjoy your pregnancy because it is the most beautiful thing. I wish you all the best.

I would love to talk to you more if you want to, my home email address is debbie@g-node.com.au, if you want to email me. I noticed you were in Drouin, is that Drouin in VIC? I am in Bunyip.

Love Deb
:)

Hey Deb,

Yep Drouin near Bunyip in Vic. I have emailed you hun.

Did you have your babies at warragul hospital?

Thanks to everyone for their thoughts, I feel like I am definitely coping better and feel much healthier after seeing a Naturopath who specialises in fertility, lots of people are asking me if I am pregnant because I am glowing, but I'm not yet, but it's nice to know that my inner health is showing.

Take care all.

Love Deb

Hey Deb

I also went to see a naturopath before falling pregnant.

I felt so amazingly different after I seen him a few times. He said to me my body wasnt a breeding ground for a baby- and put me on some natural remedies.

After the time frame he gave me to fall pregnant... I even felt better in my outlook for the pregnancy.

He checked my whole body over.. and I just felt amazing when I seen him. I stopped seeing him when I fell pregnant.. but am very happy I went.

I havent had a chance to give you a call Deb... You arent even far from my thoughts. It was Savannahs birthday yesterday... and I feel like I have lost her all over again.

I think just knowing other mothers have been touched by anencephaly... makes me feel not so alone.

xx Take care hun

Lori just wanted you to know i was thinking of your precious savanah yesterday on her first angel bday:hugs:

Thanks so much hun...

I really appreciate it

I have experienced the loss of two babies to Anencephaly and hope that I may be of some help to you. I lost my first angel Sarah on July 22 in 1990, I was 22 weeks gestation and had just finished watching her on an ultrasound waving or so it seemed to me. 20 minutes later a doctor was telling me that if I carried my baby to term, she would live for an extremely limited timespan, days at most, and be in excruciating pain. I was too dumbfounded, to even consider what the doctor was saying to me but my partner took over. To this day, I remember walking out of that hospital that day faced with the decision of ending my pregnancy or allowing my child to suffer in pain. In the end, I decided to end the pregnancy although there has been times when I wish I hadnt. After Sarah's funeral, I fell pregnant again and it happened again! This time I was 20 weeks. The midwife told me it was a boy and we named him after his dad and donated him to research to help try and prevent this from happening to anyone else. I honestly do not think I have ever truly came to terms with those decisions. Its been 17 years since I lost Sarah, every year I buy a cake and some flowers for her birthday and light a candle at Christmas. She now has four younger siblings, aged 16, 15, 13 and 10. They all know about thier big sister and celebrate with me. I guess I just want you to know that I understand your grief and if you ever need a friend, please feel free to contact me. I still cry for Sarah today thinking of all she should be doing. Grieve in your own way in your own time and let no one rush you.

Julie

Julie I am so sorry to hear of you 2 :angel: being lost to anecephaly as well, when it first happens to you, ypu think your all alone but then you find so many other people

well my Katy's 4th bday is coming up and I am missing her more and more, I think because I am finally watching one of my babies grow up and I wonder does Jack look like what Katy would have looked like :(

Hi everyone

I'm a new member, I've just registered after finding this website as I was googling about anencephaly support here in Australian.

My name is Lea, I gave birth to my twins in June last year, Ben was diagnosed with Anencephaly at our first ultrasound at 13 weeks. He is survived by his gorgeous twin sister Nara, they were born at 34 weeks gestation in Brisbane.

I found it very hard to find support in relation to anencephaly when Ben was diagnosed, I have since created an online support group for Australians touched by the condition, if anyone would like any information about it please feel free to contact me and I'll happily tell you more.

Already I see one friendly face that I have encountered in my internet travels (I won't name names, I hope she recognises me as I've been wondering how she was *waves*).

I'm currently expecting a rainbow baby (singleton this time) in February, I look forward to getting to know you ladies in time and am sorry for your losses.

Lea xxxxx

Hi, my name is Lea, I'm mum to two beautiful girls and a little boy in heaven named Ben who was born with anencephaly. I had a twin pregnancy which of course made things that little bit more difficult to get our heads around. I already see one familiar face here (not naming names, I hope she recognises me as I've been wondering how she was doing). I belong to a wonderful Australian Anecephaly support group which is a wonderful thing, but it's always nice to meet other parents in the same or similiar situations.
I had my twins at 34w3d in June 2006, my little survivor Nara is a force of nature. Ben was alive at birth and survived for just over an hour, he was and will always be a precious baby boy.
I'm expecting a rainbow baby in February next year, it's been a scary but exciting journey through this pregnancy thusfar.
I hope to get to know you all well.

Lea xxxxx

Rainbowbaby,

I would love to learn more about your support group if you could provide me with some info that would be great. I am sorry I havn't looked at this site for a while and just saw your post, I am so sorry about the loss of your little boy.

Rosey69
Hi
I am just devastated by your post, as mentioned above I have not been to this site for a while and I am so sorry to hear of your losses. It has almost been a year since I lost my second angel and we are trying again but are really scared. We have a healthy 3yo boy and I am desperate to give him a sibling and but so far no luck falling preg. this time. Maybe I am putting too much pressure on myself, but I feel like I am living by ovulation etc. Just a question, how long after your losses did you have your next child? I hope that is not too personal, if it is please don't answer it.

Thankyou

Debbie

Hi Debbie, thanks so much for your reply here.

The support group I founded along with a dear friend who also suffered a loss through anen in a twin pregnancy is called AS~AP (Anencephaly Support ~ Australian Parents), it is open to anyone who has been affected by a pregnancy with anen, not just the parents but siblings, grandparents etc.

I'll send you a link to the group in PM as I don't know about forum rules and wouldn't want to post openly just in case I get in trouble.

If anyone else would like the link please don't hesitate to ask me, we are so eager to build our membership base and start helping and supporting people like ourselves.

Debbie, I wish you the very best of luck TTC, I know the fears involved with trying again, I can only imagine after two anen pregnancies you are on tenderhooks and am certain that can't be helping your efforts any. It took me 8 months to fall again, I think I was lucky, I just opened my heart to the chance that it would be ok.....I was also breastfeeding Ben's twin so that was hampering my efforts somewhat. Now I have 5 weeks to go until I meet my little rainbow baby, I can't believe it, the pregnancy has been full of anxiety on my part....I was terrified last week as I thought for sure I was going to give birth at the same gestation as I did the twins but thankfully I'm in one peace!

Anyway, I'll get that link off to you now.

Lea xxxxx

Debbie, I'm sorry but the forum won't let me PM you, I really don't know why.

The link to the group is on my public profile page so feel free to go take a look there........you are of course more than welcome to join the group if you think it's for you, we'd love to see you there.

Lea xxxxx

Hi Deb
I gave birth to our 1st child at 20wks gest, we were told at our scan that she had anencephaly. This was in March 2001 and since then i have now 3 kids! Back then i didnt take any folate, didnt even know what it was. I feel for u to have experienced it twice is so unfair! We were told our bad news on my 23rd birthday and it tore me apart, i now cope alot better since having kids. Back then i couldnt find any one in Aust to talk to on the internet, i am amazed at just how much info is now there since almost 8 yrs ago! Would love to chat someday.........Take care Helen

Hi Helen, I'd like to welcome you to take a look at my profile page and find a link to my anencephaly support group AS~AP (Anencephaly Support ~ Australian Parents)....we'd love to have you join us. Lea :-)