(51 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

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:

.. 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.


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.

HappySmileyFace Sun 28-Jul-13 12:36:14

I am glad you are getting this support -wish I had known of MN when I was going through this.

It is great you have all this factual knowledge. It helps to try and understand the "why" behind these things.

For me there has been a happy ending -I am sharing this in case it gives you hope too. I went on to conceive 2 months after this loss and now have two DC. Both pregnancies were uneventful. I feel very fortunate for this.

Hang in there.

ldt87 Sun 28-Jul-13 13:31:53

Congratulations to you both on your successful pregnancies, and sorry for the losses you've experienced to get there.

This information has really helped me process the situation, and come to terms with everything, to the extent that I've found this emotionally much easier than my miscarriage, if that makes sense

Anyway, I hope other people looking for this type of support find this, because it's been a great comfort to my husband and I.

You've all been amazing, and you probably don't know what a difference you've made to us but it's been massively comforting and helpful to speak to others who've gone through this and to be lucky enough to have dustyblues knowledge at our fingertips. I'm so grateful.


StormBird Sun 28-Jul-13 23:16:07

Hi there. I can see you have had lots and lots of advice which is great. I have experience of anencephaly in 2 pregnancies. My first in 2010 was terminated at 15 wks, I went on to have a very healthy boy in 2011. And my second was terminated at 15 wks in 2012. I'm now 23 wks pg and I'm pleased to say all seems ok with this pg. The thing is we were always told it was a one off and we baffled science it seems when we were discovered to have a baby with the same nueral tube defect a second time around. I and dp have undergone lots of test but we have been found to be perfectly normal with no evidence of a faulty gene between us. It seems for us it was the luck of the draw. You are both brave and wise to be absorbing so much information about this - I did the same. The thing is, its unpredictable and all you can really do is take the higher strength FA live healthily and hope for the best. I'm so sorry you had to go through this and I wish you the very best of luck on your journey. Sending hugs x

ldt87 Mon 29-Jul-13 00:12:09

Wow stormbird, I must say, I have also been told this is likely to be a one off occurrence. I'm so sorry you have had to deal with this twice. Thank you for replying to the topic and sharing your experience. We're you on high dose folic acid when you had your second baby with anencephaly?

I am taking the high dose folic acid already and hoping to try again after one period, which would mean I will have been taking it for a month and a half at the time of ovulation and will obviously continue to take it into pregnancy if I am lucky enough to fall pregnant in that cycle.

Would it be enough to have been on the high dose for 6 to 7 weeks prior to conception? I don't want to take unnecessary risks, but also want to be pregnant again as soon as possible.

StormBird Mon 29-Jul-13 15:38:49

Hi ldt87. It's safe to say that first time around I wasn't taking the Folic Acid when I concieved and I didn't take it until we realised we were PG which was about 5 weeks in - just at the crucial moment where it seems the embryo needs the additional FA to develop properly. At that point in our lives we weren't planning a baby, it was a happy accident that ended tragically. It took us 5 months to fall pregnant the second time around with our son and I was taking the high dose Folic and I had also introduced lots of foods which were fortified with FA or contained it naturally - I was slightly neurotic about it all then.
At the 12 week scan we could see a beautiful fully formed skull which was such a relief but the bloods were bad and the nuchal fold was on the large side which increased our risk of downs to 1:43. After the trauma of a CVS we were given the all clear and from then on the pregnancy was completely uneventful. (Until I produced a 10lb 4oz baby - nuff said)
The 3rd pregnancy was slightly different - another accident but I was fully aware of the implications of having not taken FA when we concieved. Again, we discovered we were pregnant around 5 weeks. Unfortunately, I had stopped taking the FA as it had made me incredibly constipated (sorry TMI) just around the time we concieved. I just knew that all was not well and anencephally was confirmed at the 12 week scan.
Our 4th Pregnancy was another surprise but not unexpected. We had decided to try again about 4/5 months after the second termination and then life took over and our circumstances changed so we decided to stop. I came off the FA as it was playing havoc with my bowel again. The next thing you know we have a positive test!! We concieved on the cusp of me stopping the FA and I didn't take it again until I found out I was PG at 5 weeks - same old story. We were worried to say the least. I had numerous early reassurance scans and all looked OK. At the 12 week scan we were delighted to find we had an unbelievably healthy pregnancy - no problems! But I had a feeling all was well.
Sorry for the mamoth post but I think my point is that it's important to make sure you take the FA but I think Dustyblue mentioned in a previous post that you can't necessarily build this up in your system, so so long as you have taken the FA during those crucial early stages then you should hopefully have the foundations there to be able to develop a healthy baby.
Don't put too much pressure on yourself to get pregnant straight away as this can be a trying and disappointing road. Let your body recover cos you've been through a lot and make sure you take the FA and try to relax (easy for me to say). I've been in your shoes and I can give a good guess as to the way you feel. I was temping, using the clearblue fertility monitor and the saliva test all at the same time and it still took us 5 months to fall. It was very frustrating and I nearly drove my DP mad. It's highly unlikely you will have to go through it twice like we did. This is just our story and you are creating you're own. smile

ldt87 Mon 29-Jul-13 21:52:36

Hi stormbird.. Thanks for answering my nosey questions. We've never charted, I just used ovulation tests for one cycle before I got a positive last time but before that it's always been a case of pot luck really lol. I will be using the ovulation tests again this time.

Trying to get pregnant is certainly not easy for everyone!

Thanks for taking the time to talk to me about your experiences, I feel much better about trying again having spoken to real people about the whole thing xx

StormBird Mon 29-Jul-13 22:23:19

Not a problem hun. I did babble a bit in my last post so I apologise for that. Good luck TTC. I hope its straightforward for you from here on in. The end result is beyond fantastic smile

ldt87 Mon 29-Jul-13 22:53:05

Oh absolutely, having a baby is worth the heart ache along the way. We never expected these difficulties and I said the other day that by the time we bring a baby home it will be spoilt rotten being so long awaited!

No need to apologise, I am soaking all of this information up like a sponge lol.


RosesInTheRain Sun 04-Aug-13 23:38:50

missed the replies to this. Dusty that's interesting. The tests on DS2 came back with a small deletion- the genetic consultant plus others were very interested in it. However they have said it is unrelated to the acrania- at least, there is no other documented case of that specific deletion and acrania.

The possibly significant bit in my first post wasn't very clear- they were interested as the few studied genes included could have huge implications on the cardiovascular system, and heart disease etc runs in DH's family, so I think the genetics team got a bit excited they might have a case to study! They did suggest that DS2 may have had big problems because of this deletion, if he had been otherwise healthy. It was really helpful to know and helped with the healing.

Funny you say you had a feeling things weren't right with your 3rd pregnancy storm, I did too. I'd mc before and was convinced it was going wrong even when I had awful morning sickness as with DS1 and got past the 8/9 week mark (when I'd mc before).

How are you doing ldt?

ldt87 Mon 05-Aug-13 01:50:35

Hi roses, struggling tonight. 2 friends of mine had babies on Friday, so that's all over Facebook. I'm over the moon for them, but hurting for myself. I took a test yesterday which came up positive instantly which really threw me. They said leave it two weeks though so it's my own fault really. I expected it to be positive.

My first lost baby would have been due in October so I feel that due date getting closer now as more and more of the pregnant people I know are bringing their babies home. I was consoled by the fact I was pregnant again and had a new due date. Now I just have two losses, two dates looming when I won't have my baby. And I don't know when I will have a baby, which is so hard.

People say oh next time will be your time and I just feel like screaming that actually I waited 18 months to get pregnant in the first place, had 2 and a half months of one pregnancy, 3 months of another, two losses, and I've had almost 6 months of pregnancy with nothing to show for it. I feel like I've actually waited and been patient as it is.

I have also been preached at by someone very anti abortion this weekend so overall I'm feeling pretty bloody sorry for myself and angry at everyone else for not knowing how I feel!

Sorry for ranting, how are you roses? Xx

ldt87 Mon 05-Aug-13 01:51:29

That should say I expected the test to already be negative xx

HappySmileyFace Mon 05-Aug-13 12:47:58

Just want to say I am so sorry you are going through this. I remember all those feelings that come up when others are pregnant around you. Even though it was over three years ago for me, I can still tell you exactly who at work etc (even celebrities!) had babies around the time my lost baby was due. It ate away at me.

Please be gentle on yourself - its ok to feel sad and I think it is part of the grieving process. (I know these words can't take away your pain -I just can really relate to what you are going through).

StormBird Mon 05-Aug-13 13:31:13

I relate to ldt87 and Happy.

We remember every noth due dates that were never realized and both termination dates.

We decided to do something, try and get some closure, even say goodby if you will. To some that might sound a little silly considering the babies were never born, we never knew them etc. But there's a bond in my eyes from the moment you find out your expecting.

We took some Chinese lanterns on the first anniversay of each termination and let them go in a beautiful place overlooking london very near to where we live. We played a bit of music and had a beer each (so sophisticated lol) and shed a little tear. But that helped us deal with our losses like you wouldn't believe. I can;t even explain it. Just an idea xx

StormBird Mon 05-Aug-13 13:31:48

*both due dates

I know you have had some great advice here, just wanted to send lots of luck and best wishes.
I had 2 healthy pregnancies, the third was terminated at 17 weeks due to anencephaly. We then went on to have ds2 a year after the termination. I was told by my consultant that it was quite rare, the chances of it happening again and I had quite a lot of early care in the first 12 weeks.

ldt87 Mon 05-Aug-13 20:22:28

Thanks everyone for replying and talking to me. I'm quite stoic about what's happened and the choices we've made. I'm also quite positive about trying again in another cycles time and hoping for a positive pregnancy experience next time. I've just had a bit of moping time these last couple of days and wallowed in it a bit.

I can't stop thinking of the fact that I'll always remember these dates, easter Sunday and the day the royal baby was born will always come around next year if you know what I mean?

We went to the garden centre with my older girls so they could choose trees and plants to plant for the baby. I felt that they needed a way to acknowledge their own loss having told them before the 12 week mark.

Hoping to be pregnant again come the end of sequences, so fingers crossed for a happy Christmas announcement after the 12 week scan etc xx

Tantrums, can I ask, did they have any idea something was wrong before the 17 week mark for you? So sorry you've also experienced this xx

No idea at all. I had a scan at 16 weeks, they thought that the baby was in an awkward position so I had to come back the next day. Had the scan the next day and the consultant confirmed that it was anencephaly.
I went into hospital 2 days later, had to give birth to the little one.
But no, no idea anything was wrong, I even took my older DCs to the scan.

RosesInTheRain Mon 05-Aug-13 22:11:50

rant away, it's very helpful I find! I have a friend who was due the same day as me. I haven't seen her yet and her baby is now 2 months old. I just can't. I've sent her messages and commented on facebook photos but I can do that from home and have a good cry afterwards!

It does get easier but sometimes I still feel so sad. What gets me cross is acquaintances asking when I'm going to have a second child- after a while of feeling angry/sad afterwards I've started educating them wink

We named the baby, and as you've seen I refer to him as DC2, which may seem silly to some but I want to acknowledge he was there, even though he couldn't have lived. I have a candle and a picture in the living room- not a scan pic, I find that too upsetting as it takes me back to the scan and following days, but a picture DH and I chose to remember him by. We are hopefully moving house soon (fingers crossed), so didn't want plants but I may do that in our new house.

Also hoping for a happy Christmas announcement- for you and me both! x

Kirrin Mon 05-Aug-13 22:23:57

you've already had lots of great advice but I just wanted to add that I was only told too wait one month before trying again. I have since had two healthy pregnancies, which were nerve wracking but uneventful.

best of luck to you

ldt87 Tue 06-Aug-13 00:16:43

That must have been heartbreaking tantrums, I can't imagine what you've been through. Thank you for talking to me.

That was meant to say hope to get a positive attitude the end of September so we can announce at Christmas and be pregnant on what would have been our due date. Have already spent nearly 6 months of this year pregnant so would love to be going into 2014 with a healthy pregnancy

Kirrin, that's good to know, I was told the standard advice is two cycles, more to do with dating, and physical recovery than folic acid or risk of it happening again. We have decided we are happy to try after one cycle, seeing as it will still take us to two months post termination on the small chance of it happening straight away.

Fingers crossed for everyone hoping to be pregnant this year and for healthy pregnancies to those of you who are already

My friend invited me to meet her baby today, and I had to explain to her that I can't be around her gorgeous little newborn right now, and it wouldn't be right of me to go around upset at such an amazing time for her family. She seemed okay but I hope she understands. Xx

densie14 Wed 01-Oct-14 12:56:30

Hello Ladies,

I realise this thread is over a year old, but I wonder if anyone is able to offer me some advice. My daughter who is 25 had a 12 week scan on 22 July this year when it was discovered the baby had ancephaly so she had a surgical termination on 28th July. She was and is heartbroken and wants to ttc as soon as possible.

The problem is 9 weeks on she still hasn't had a period, is this normal? she has been back to the doctor who quite frankly wasn't very clued up, but we had read about Provera to help restart her periods so he prescribed that but not taken it yet. She is constantly doing ovulation tests as she says she feels she needs to fall pregnant again to be able to move on, but the results are all over the place with these and I dont understand how she can ovulate but not be having periods!

As her Mum I am desperately worried about her and want to help her as much as possible which is why I have posted on here. It seems like she is stuck in limbo and so sad just wondered if any of you could help at all?

DRSLondon Fri 03-Oct-14 14:13:46

Hi Denise

I had a similar experience in March but with a termination for spina bifida at 20 weeks. I also was heartbroken and desperate to be pregnant again.

I can imagine how frustrated she is and how consuming it is. Although it is normal for periods to be delayed she should go see a gynaecologist. The GP won't do an examination. I had my pregnancy through IVF and the clinic were able to check my uterus. If she is still bleeding from the termination it is possible there is tissue that needs to be removed.

It is also possible that the stress is causing her body to behave differently, but I realise that is not particularly helpful.

She's lucky to have a mum like you. It will get better for her.
Sending her lots of luck xxxx

densie14 Mon 06-Oct-14 08:54:59

Hi DRSLondon,

So sorry to hear that your have suffered the heartbreaking decision not to continue with a much wanted pregnancy.

Thank you so much for replying. She did contact the gynecologist that carried out her surgery who didn't seem overly concerned that her periods hadn't returned. But yes I think you are right, she needs to take control and arrange a consultation as soon as possible. The longer it goes on the more it is pulling her down.

It seems that women she knows are announcing their pregnancies on a daily basis at the moment which she finds particularly painful and hard to bear.

I hope you things are getting better for you.

Good luck Sweetie xxx

densie14 Tue 07-Oct-14 15:31:15

Bit of an update DRS - my daughter has been referred back to the gynae consultant that carried out her termination. Talk of Provera & Clomid has also been mentioned. The Doc prescribed Provera to try and kick start her periods. She has to wait a week or two to see the consultant but maybe she will know more after she has seen him - fingers crossed.

ak1990 Sat 01-Nov-14 11:36:16

hello ladies
i have had 2 anencephaly pregnancies.
the first pregnancy was a surprise, so i didnt start taking FA till about 5 weeks. the pregnancy was very easy, no morning sickness or anything. for some reason i had a gut feeling that something is wrong, it was just too smooth. at our 12 weeks scan we got told that the baby didnt form a skull. we were so heartbroken and shocked. the doctor explained to us that it could be due to not taking enough FA but reassured us that it wont happen again.
i straight away started taking 5mg of folic acid after the termination. after my first period we got pregnant again. we were over the moon. this time around i was getting morning sickness and was feeling all the effets. but it didnt bother me because in my head i knew something good was happening. yesterday we had out 12 week scan and we got the bad news again. our baby was online 10 week+3 and also had anencephaly. at the moment i'm not sure how i feel. i am angry. my doctor said this is very rare and he doesnt have an answer for me. i have my termination next week, more tests will be done during that. i am not scared it will happen next time we get pregnant. does anyone have any advice on what i should do. or where i can get some more information if this will happen again. we want a baby more then anything and i dont know if i can handle more or this pain.

Jard32 Sun 21-Dec-14 15:31:14

Hi, I know this discussion was a while back but I'm wondered how things worked out for you? I terminated at 13 weeks for anencephaly in June this year, and last fri 19 dec I had an 12 week scan for another pregnancy and the heart had stopper beating at 9 weeks and it was due to anencephaly again.
We have a 3 and a half year old perfect child so I'm really freaked out. I can't believe we're going through this again, I'm so angry. And I've just read the odds for having it happen again go up massively if it's happened twice.
We so desperately want a sibling for our daughter, she asks all the time which is very difficult for us.

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