Anencephaly and folic acid

[Jo_banana]

My last pregnancy resulted in termination due to anencephaly.

That was 6 years ago. Fast forward to now and I'm pregnant. It was not planned - I'll be 41 later in the year.

As soon as I found out (around 4 - 5 weeks) I started to take my heavy duty 4mg folic acid tablets. By rights I should have been taking them before conception but as this whole thing wasn't planned or expected I wasn't.

I guess my question is... have I left it too late? I believe the spine etc is still forming at my current date of 6 - 7 weeks and will be for another fortnight or more. I have been taking the folic acid for 2 weeks now and will continue to take it up until 12 - 13 weeks.

I have a healthy 8 year old son with no problems at all, so I know that it is possible for me. I was just taking the bog standard folic acid for him.

I don't know. I am very worried. Having a scan on Saturday (private) just to check all is well but know it will be too early really for them to see if there are definitely problem's with baby's skull. Will probably have another at 10 weeks also.

I never really knew how much I was effected last time until now. I worry about history repeating itself, and yet I have my wonderful little boy so know things may well be fine too. Its the not knowing.

Its an emotional time.

 

[Carmello_01]

I am so,so sorry about your loss first of all, and congrats for this little one!
You can't wind back the clock, but getting back on the folate as soon as you did is great.



Best wishes, sending lots of luck and love.

 

[Sammy2009]

My last pregnancy resulted in termination due to anencephaly.

That was 6 years ago. Fast forward to now and I'm pregnant. It was not planned - I'll be 41 later in the year.

As soon as I found out (around 4 - 5 weeks) I started to take my heavy duty 4mg folic acid tablets. By rights I should have been taking them before conception but as this whole thing wasn't planned or expected I wasn't.

I guess my question is... have I left it too late? I believe the spine etc is still forming at my current date of 6 - 7 weeks and will be for another fortnight or more. I have been taking the folic acid for 2 weeks now and will continue to take it up until 12 - 13 weeks.

I have a healthy 8 year old son with no problems at all, so I know that it is possible for me. I was just taking the bog standard folic acid for him.

I don't know. I am very worried. Having a scan on Saturday (private) just to check all is well but know it will be too early really for them to see if there are definitely problem's with baby's skull. Will probably have another at 10 weeks also.

I never really knew how much I was effected last time until now. I worry about history repeating itself, and yet I have my wonderful little boy so know things may well be fine too. Its the not knowing.

Its an emotional time.

With my first i didnt know i was pregnant until 6 weeks so never took folic acid as we were not trying to conceive... she was born fine.

With my second we had IVF so i took Folic Acid months in advance and after and she was diagnosed with Hydrocephalus at 20 weeks. Its supposed to prevent Neurological tube defects (see below) but it never worked for us... she had a blocked/abnormally thin neuro tube in her brain and was unable to drain the fluid from her brain.

Repeated studies have shown that women who get 400 micrograms (0.4 milligrams) daily prior to conception and during early pregnancy reduce the risk that their baby will be born with a serious neural tube defect (a birth defect involving incomplete development of the brain and spinal cord) by up to 70%.


The most common neural tube defects are spina bifida (an incomplete closure of the spinal cord and spinal column), anencephaly (severe underdevelopment of the brain), and encephalocele (when brain tissue protrudes out to the skin from an abnormal opening in the skull). All of these defects occur during the first 28 days of pregnancy — usually before a woman even knows she's pregnant.

Many people don't know they are pregnant until late on or just are not aware of taking this supplement and their babies have been born fine so I wouldn't worry

 

[Nosy_Cow]

I'm sorry for your loss sweetie.

And congratulations on your new pregnancy!

The important thing is you are taking your FA now. Like Sammy said loads of people don't know they are pregnant till late and never take FA and they're babies are ok.

I was taking FA about 2 months before we conceived Chloe and she still had a NTD (SB & Hydrocephalus). I'm now on a clinical trial that's all to do with FA and NTD and inositol.

You are doing what you can! You are taking the FA now - you didn't know you were going to fall pregnant so don't beat yourself up about it honey.

I wish you all the luck in the world for this pregnancy. Also you should be entitled to extra scans at 16 weeks and 24 weeks (along with your usual scans) make sure you have these! Even though it was Aencephaly and not SB they should do these extra tests!!!

 

[Jo_banana]

Thank you all for your words of encouragement and for being so honest about your own experiences. Its very humbling and yet it is good for me to hear as I've never ever spoken about any of it in any detail to anyone other than my OH and a few very close friends and my mum of course. Many people know I lost a baby but most think I just had a miscarriage without any complications so I can't talk about it to them.

Yes, I feel rather fatalistic about it now. I can only do what I am doing and the rest is out of my hands. Paying for the first scan (now Monday, not saturday). And will probably pay for another at around 10 weeks as my first NHS scan isn't until 12 weeks. Its costing over £100 a go but money doesn't come into it for something like this.

I didn't realise that about the later scans Nosy. I will DEFINITELY mention this to the consultant when I see them in April. The NHS are quite canny in only giving you things if you specifically ask or show them they have to provide it. Is the extra scan thing something that is advised officially? That is, is there anything I can use to back up asking for extra scans? It maybe I do get offered them without any extra nagging. Will see!

Oh, and just checked, I'm actually taking 5mg a day of the folic acid. I am also eating oranges and slurping orange juice a lot too. plus eating cereal fortified with folic acid (not so bad as I like Cheerios!).

In limbo then for the next few weeks. My OH has had to tell a few people at work as he will be taking time off to accompany me on the scans. He has been utterly amazing. For that I am blessed.

I will update this thread when I have any definite news

Thank you all again for your messages.

J xx

 

[lizziedripping]

Hi my sweet, and sorry you are facing this anxiety at what should be a happy time.

If it offers you any reassurance, one of my close friends too had to terminate a pregnancy at 20wks due to anencephaly - she was devastated. She was too anxious to consciously try for another baby and she and hubby decided to wait, but lo and behold 8 months later found out she was accidentally 7wks pregnant.

She hadn't taken the folic acid either, and baby was absolutely fine. Funny thing is, the same happened 4yrs later (contraceptive failure) and she didn't realise she was pregoo til 10wks. Again, baby healthy.

In an ideal world we'd all take the folic acid for the recommended time, but often we don't - they make me feel even more sick in those early months. Have faith hun that this time you will have the pregnancy you deserve, and 8 months from now you'll be cradling your healthy, surprise bundle - much love x

 

[Jo_banana]

Hi my sweet, and sorry you are facing this anxiety at what should be a happy time.

If it offers you any reassurance, one of my close friends too had to terminate a pregnancy at 20wks due to anencephaly - she was devastated. She was too anxious to consciously try for another baby and she and hubby decided to wait, but lo and behold 8 months later found out she was accidentally 7wks pregnant.

She hadn't taken the folic acid either, and baby was absolutely fine. Funny thing is, the same happened 4yrs later (contraceptive failure) and she didn't realise she was pregoo til 10wks. Again, baby healthy.

In an ideal world we'd all take the folic acid for the recommended time, but often we don't - they make me feel even more sick in those early months. Have faith hun that this time you will have the pregnancy you deserve, and 8 months from now you'll be cradling your healthy, surprise bundle - much love x

Thank you so much. Your post has made me feel a lot more upbeat.

I go for my first scan this evening. I doubt they'll be able to tell my anything aside from how far along I am. But even that will help as I am a bit clueless about when my last period was so I could be anything from 6 to 7 weeks along.

J xx

 

[Nosy_Cow]

Please let us know how you get on honey!

As for the extra scans - I'm not sure if they was anything officially! My consultant told me that I will be given the one at 16 weeks as that's when the spine can be seen clearly although it is better at 20 weeks. It's more of a reassurance scan - to make sure everything has closed properly and everything looks good. The 24 week one is again a reassurance one - at that stage the spine is extremley clear.

Hope this helps hun

 

[Tulip]

Jo - how did the scan go?
As I said by PM I'll be pushing for extra scans such as those promised to Mandi. If we've had NTDs before, it could just as easily be SB next time and we should be monitored closely. xx

 

[Jo_banana]

Hi there

Well, got there and had the scan. Nothing on the regular ultrasound so had the vaginal one. They found the gestational sac but nothing else - dated 4 weeks and a bit. I was like "WHAT?". I had thought I was over 6 weeks. So I've just got it all wrong, assumed i was 4 weeks when I got the positive pregnancy test, but I wasn't, I was just 2 weeks when it showed positive. It wasn't a faint line either. Definite, strong one.

I have been told not to worry as the sac looks perfectly normal and right for the dating. The yolk sac, fetus and and heartbeat don't show till after 5 weeks.

But it was a bit of a nightmare as I am fast developing a phobia of the scanning room. Very paranoid to be honest. Going back in to one, the first time since the awful experience I had the last time, was grim and I was very nervous and on edge. It should be a happy exciting place but just not for me. Not helped when they initially couldn't find anything at all. At least they have found the sac and it all looks viable and as it should for its age. I've had no bleeding or pain as such and get queazy feelings and things. The consultant who did the scan said all these things are positives. I asked him about a missed miscarriage but he didn't think so as the sac looked nice and round and as it should. Just too early to detect anything else. But today Im feeling down, full of a cold and anxious about my next trip in to be scanned. They told me to come back in 3 weeks.

I did a pregnancy test as soon as I got home and all still pregnant.

The GOOD thing is, as it turns out, I have been taking my 5mg of folic acid 2 weeks from conception. Given all the neural tubes develop at the earliest stages this gives me some comfort that for all I've got my dates muddled, it does mean that little blob of life in my belly has been given lots of goodness early on!

What I really want of course it to be told that all is well. I am just going to have to wait I know, but its just horrible and not an easy wait.

 

[Tulip]

Great news you know your body so well and got back on the 5mg pronto

 

[Nosy_Cow]

Glad everything went well honey!