anencephaly

(45 Posts)
ldt87 Fri 26-Jul-13 09:11:45

Hi, some of you may know that yesterday I had a termination due to anencephaly. Now I feel like I would like to find out what the chances are of this happening again

I am on a huge dose of folic acid and have been told to wait two cycles before trying again, obviously the chance of going through this again is terrifying.

I really would just love to hear from anyone who has any experience of this, and going on to trying to get pregnant again, anyone who may be further down the line than me, with any advice or information

Thank you in advance xx

ldt87 Fri 26-Jul-13 17:23:12

Bumping for the evening audience xx

ldt87 Sat 27-Jul-13 00:15:39

Anyone? Not meaning to nag, just in case someone sees who can answer.

Dustyblue Sat 27-Jul-13 02:02:32

I'm so sorry you've had to go through this.

The chances of it happening again are very, very low, especially when taking large dose folic acid.

Some mothers of anencephalics have been found to have a genetic mutation that prevents folic acid being utilised properly in the body, but even in these women having a second anencephalic baby is rare. I know of one woman this has happened to (in Australia, and she does have the mutation) but she wasn't taking folic acid at the time of her second pregnancy.

This website

www.anencephalie-info.org/e/report.php‎

is run by a woman in The Netherlands called Monika, she's done tremendous research into anencephaly so I'd go through her website. You could also contact her via the site for advice/info, she is lovely (and her english is great)

Best of luck to you.

ldt87 Sat 27-Jul-13 02:24:03

Thank you so much for the reply dustyblue. I don't know if it makes any difference but I have two children from years ago, whose pregnancies I had no issues with. Now I have encountered this problem which was pretty scary, but as you say hopefully a one off for me xx

ldt87 Sat 27-Jul-13 10:11:04

Dustyblue I have looked at that site, thank you for pointing me there xx

LoriGrimes Sat 27-Jul-13 10:26:02

I had a termination because of anencephaly a few years ago. I took extra folic acid for about 6 weeks before we started to try again and was lucky enough to get pregnant straight away. I have had 2 perfectly healthy children since.

Was a horrible horrible time and my thoughts are with you.

ldt87 Sat 27-Jul-13 10:37:43

Thank you so much lori for replying. See i am torn because I've been advised to wait 2 cycles which obviously I don't want to really after trying to conceive for 2 years at this point and having 2 losses already, but I worry that if I only wait 1 cycle will it be more likely to happen again? Xx

LoriGrimes Sat 27-Jul-13 11:56:59

Hi, I think the important thing is to make sure you have been taking f
The folic acid for a while before trying again. Do you have to wait for autopsy results? When we had our results the Doctor said he could see no reason for us not to try again.

Is such a horrible thing to have to go through. How many weeks were you? Mine was picked up at the 12 week scan and I stayed in hospital to have the baby. They wrapped her up and put her in a little basket for us to see. Do you have to have a funeral too? X

ldt87 Sat 27-Jul-13 14:47:39

Hi, there is no autopsy and we didn't see the baby. I was 12 weeks too. I just don't know how long is long enough for the highest dose folic acid you see. Everything I've read says different amounts of time xx

Dustyblue Sat 27-Jul-13 14:50:16

Yes, the important things are to ensure you've been on the folic acid solidly for those two cycles, and also just to give your system time to recover from what it's been through.

I can't prove this, but I doubt it would make a huge difference if, let's say, you did conceive again in your next cycle. Just keep up the folic acid. I researched anencephaly heavily for my masters (in bioethcis), so I can say with confidence that it's VERY rare to have this happen twice, EVEN in women who have that genetic issue of not absorbing folic acid. Also your chances of having that genetic issue are rare too... it's possible but not probable.

I'm glad you found that website useful... I should've mentioned though (I can't believe I forgot to say this) that the site owner is deeply religious and against TFMR. However her info is solid, and I like her for spending so much time/effort researching anencephaly when not many doctors/scientists do. However if you do contact her for further info, just tread gently around that.

It is awful that you (and LoriGrimes) or anyone has to deal with this... anencephaly affects 1 in 1000 pregnancies, which isn't all that rare on the grand scale of things. But really, your odds for next time are really, really good.

Love to you xx

Dustyblue Sat 27-Jul-13 15:08:15

Also, what dose of folic acid are you taking?

The advice here differs- some doctors will say "take 400mcg", which is the standard amount in most prenatal vitamins. However some other doctors, if you've already had a bub with a neural tube defect like anencephaly or spina bifida, will say "take 5mg" (daily). That's a big difference... if I were you, I go with 5mg vs the "usual" 400mcg.

Since folic acid is a water-soluble vitamin (rather than fat-soluble, which means it clings to fat cells in the body and builds up) it's hard to 'overdose' on it- you just wee out the excess.

It can be hard to find it in that 5mg dose, but if you can I would. Also it can't hurt to eat more food containing it (dark leafy greens like spinach and dark-green lettuces & beans/lentils are the top 2, you can google others). They're hugely healthy anyway so can't hurt to top up! No need to obsess though... but if you like spinach just eat a bit more smile

Love to you xx

ldt87 Sat 27-Jul-13 15:53:05

Thank you so much dustyblue, I am now on 5mg of folic acid per day, I probably will follow the advice to wait two cycles for fear of this happening again, though I cant deny the temptation is there to have one period then try again.

Thank you, your advice has been greatly appreciated and knowledgeable, I must say I did notice the religious undertones of the website, but just looked past that to the factual information xx

lougle Sat 27-Jul-13 15:57:00

I know a woman whose first child had anencephaly and she delivered at term. She has gone on to have 6 other children, all without AE. She was not taking prenatal FA when she conceived some of them. It would be very rare to have two babies with Anencephaly.

ldt87 Sat 27-Jul-13 16:04:06

Lougle, thank you for that, it is so reassuring to know of other people's experiences

Out of interest dustyblue, when doing your research, did you find anything of interest such as prevention or causes of anencephaly, or information not so widely known?

Thank you to everyone who has contributed to this thread, it is so helpful to talk about this right now xx

RosesInTheRain Sat 27-Jul-13 19:45:53

our DS2 had acrania, which is very similar and we terminated in December after the 12 week scan. Sorry to read about yours- thinking of you, it's awful.

We had genetic testing- my hospital test as a standard- he had a small but possibly significant genetic deletion which they wanted to investigate in case either of us carried it too. So we waited a while to TTC anyway. Both consultants told me high dose FA for a minimum of 3 months... I wanted to try again straight away but actually I'm glad we waited, personally I wouldn't have coped. I did hope I might conceive before his due date but that didn't happen, still TTC!

ldt87 Sat 27-Jul-13 20:19:41

Rosesintherain, I'm so sorry for your loss, thank you for replying to my thread.I think we will wait the 2 cycles we've been advised, I really hope you get your positive soon, maybe we'll have our take home babies together. Xx

RNJ3007 Sat 27-Jul-13 20:25:22

Glad you're on the 5mg. I haven't had the same experience, but there are spina bifida gene mutations in my family, so I am on 5mg from TTC to full term. (My mum lost 10 babies due to it...)

So sorry for your loss and hope you have a safe pregnancy next time.

ldt87 Sat 27-Jul-13 20:44:58

Rnj3007, if you don't mind me asking, how long before trying to conceive were you advised to take the high dose of folic acid in your case?

Thank you for the good wishes everyone, we have sadly accepted that there was nothing we could do for our baby, and are focusing on how to prevent it happening again. It feels good to know we aren't alone, although of course I wish no one had to experience this.

To everyone trying to conceive, I wish you all the luck in the world and hope you have healthy pregnancies very soon xx

HappySmileyFace Sun 28-Jul-13 05:46:52

Just wanted to say I am thinking of you during this time. I lost a baby at 17 weeks in similar circumstances - 4 years on I look back at those few weeks after and realise now how tough it was. I too was desperate to start ttc ASAP. I think waiting has its merits if that is what has been advised to you. But I understand the urge to try.

Wishing you all the best. Be kind to yourself.

Dustyblue Sun 28-Jul-13 06:00:30

As for causes/prevention, the only things that have been solidly identified are the folic acid link, and the genetic issue in the mother that prevents absorption.

Other issues are still being tossed around though.... just as RoseInTheRain's experience, if genetic testing on bub is done, some small genetic mutations have popped up in anencephalic bubs that may or may not actually be causal. AFAIK, there's been no real similarity identified between these mutations.... so they can't say with any certainty if there really is a genetic cause.

The woman in Australia I mentioned is literally the only person I came across who's had 2 bubs affected. Her sister also had one affected, which lead to their discovery that they both carried the mutation preventing FA absorption. Her story is here:

http://www.prenatalpartnersforlife.org

.. another prolife site, but just in case you'd like to read her story. Her bubs' names are Benedict and Charlotte. And remember that she wasn't taking FA at the time of her second affected pregnancy.

There's been some minimal research into chemical causation (things like pesticides, cleaning solvents etc) but AFAIK it hasn't yet amounted to anything. A few people have researched 'clusters' of anen. bubs in various parts of the world, hypothesizing that pollution of some sort might be causal, but nothing solid regarding which actual pollutants might be the cause. Another theory for a while was that a toxin called aflatoxin might be involved- that's a naturally occurring toxin produced by fungus, that was purportedly stockpiled by Iraq under Hussein for use as a biological chemical weapon... and there was a cluster of anen. bubs in Iraq at the time. But again the research didn't amount to anything conclusive, and your chances of being heavily exposed to aflatoxin are pretty damn slim! Also it doesn't explain all the other anen. bubs around the world.

So all you can do is chow down on FA, and try to take comfort in the (very high) odds that it won't happen to you again.

Big hug to everyone who's faced this... it's a terrible thing to happen but almost certainly a one-off xx

Dustyblue Sun 28-Jul-13 08:32:29

I forgot to mention a coupla things-

As per RosesInTheRain's experience; acrania (absence of the skull) and anencephaly (absence of the brain) are virtually indistinguishable, since in cases of acrania the skull absence means whatever brain tissue does develop is eroded by amniotic fluid. So acrania effectively results in anencephaly in most cases. Therefore as far as we know, whatever gene mutations are picked up in bubs with acrania, as in RoseInTheRain's DS2, are applicable for bubs with anencephaly.

As for whether it makes a difference to wait 1, 2 or 3 cycles- since FA doesn't build up in the body, it would seem that waiting for X-many cycles is arbitrary. It's not as if you have to let it accumulate in your body to a certain 'safe' point. AFAIK there's no evidence that it affects egg quality, rather that in a very early embryo it assists the process where the neural tube forms and closes. It starts out flat and 'rolls' into a tube- this is the point where a neural tube defect happens. If a defect forms at the 'head' or 'cephalic' end, you get anen or acrania. If it happens along the length of the tube, you get spina bifida or a form of it. The neural tube closes around 3-4 weeks after conception, so when you're 5-6 weeks pregnant.

So... if you're already on 5mg FA and you conceived next cycle, there's no real reason you should be at risk of it happening again. I don't mean 'go for it'... rather that the evidence seems to be it shouldn't make a difference to risk.

Sorry for banging on, I hope I'm not overloading you with data! But it does seem OB's differ in their advice as to how long to wait, when as far as FA goes... as long as you're taking it before and during early preg the risk shouldn't be any higher than if you waited. Maybe the OB's differ in their advice for other reasons, like giving your system as a whole time to recover, letting you recover a bit mentally and so on.

xx

RNJ3007 Sun 28-Jul-13 09:12:45

Not at all. I was on it two months before Mirena was removed. But it then took us almost two years to fall pregnant. They recommended a minimum of 2 cycles for me too, purely so they could do blood tests to check I was properly absorbing it (I am).

ldt87 Sun 28-Jul-13 10:29:53

Thank you happysmileyface for replying, I really appreciate that you have shared your experience. I hope you have had a better time since in trying to conceive, and I'm very sorry you have been through this

Dustyblue, as far as I am concerned there is no such thing as too much info, I am lapping it up. I have found it hard to find factual, sensitive websites, with little or no religious slant to read about this type of thing. Everything you have said has been so helpful and much appreciated.

As I spoke to my husband yesterday, we both understood that the consultant meant to wait two cycles after the termination rather than the anencephaly, so recovery reasons I believe. We will decide whether to wait one cycle or two at the time, it may not happen for us straight away anyway.

RnJ3007, thank you for sharing your experience and knowledge with me, and I hope you have had good outcomes in your trying to conceive journey, it's such a hard time isn't it? I don't think some people realise how hard it can be just to have a baby!

To everyone here, thank you all so so much, the advice, support and information has been amazing, when I've struggled to find it elsewhere, I appreciate everyone's input, and would still like to keep the thread going for others to contribute to. It's been by far the best source of information for me and if it can bring people together or help others through this horrible experience that would be great xx

RNJ3007 Sun 28-Jul-13 12:28:47

Not at all - glad I could be of some small assistance. I'm lucky enough to have a healthy 4 y.o DD and am due a DS in under 5 weeks time, who to our knowledge, looks to have a fully formed spine. He'll be scanned after birth to double check, just as my daughter was. 2 losses, but both of those when not on the huge folic acid.

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