anencephaly

(56 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

I've been following this thread recently as me and my husband lost our first baby on 1st jan 2015 due to Anencepheley. We were told at our dating scan and felt like I'd been slapped in the face! I am 38 and we had been previously referred for fertility treatment. We have been told to try again in 3 months and take 5 mg of folic acid. It was a devastating experience but me and my husband have had each other for support. Time is not on my side so I need to be focused about getting pregnant again. Just so sad it happened to us and now back to square one after several months of trying. Would be good to hear from anyone for some support :-) x

Craschle Fri 30-Jan-15 11:22:13

Thanks for sharing your story Jl2014. I can only imagine how much strength that would have taken. I found this thread to be particularly helpful especially in understanding more about this horrible diagnosis. I wish you the very best as you endeavour to try again. Here is hoping for a beautiful healthy baby for you in the near future.
Your story has filled me with hope too DRSLondon. I hope I can have a success story to share soon too. Thankfully work has started again and it is keeping me very busy. I am lucky to have so many supportive people around me, that I feel I can talk to about my situation any time. They have played a key part in helping me through this. I still have a long way to go but will get there. I also wish you the best for the end of your pregnancy. You are so close and I hope he/she is healthy.

Jl2014 Thu 29-Jan-15 23:55:49

I lost a baby to anencephaly in May 2013. I was 13 weeks. I had been taking FA and the doctor said it was rare and wouldn't happen again. They didn't even offer us the high dose of FA. I had to ask for it based on stuff i'd read on google. They were quite dismissive and wouldn't offer us any additional testing or explanation. I'm pretty sure they didn't believe that i'd been taking FA. After the first loss, i was desperate to try again. I was convinced that if i was pregnant before my first baby's due date (November) that it would help take the pain away. I went on the 5mg dose of FA for 2 months and fell pregnant again in the August. It was a very stressful time. I was absolutely paranoid- eating spinach, brocolli, seeds, anything high in folate. I stopped using plastic tupperware and wouldn't even go into the kitchen if the microwave was on incase any of those things would increase the risk of a birth defect. I lived in a bubble.

In October at the 12 week scan I got the terrible news again that the 2nd baby also had anencephaly. So I ended up losing 2 babies before the November. I found this extremely difficult to deal with. I was so sad and so so angry. We were referred to a geneticist after this (at my insistence). They had no answers either. They have suggested that whatever kind of anencephaly that is affecting us exhibits a recessive inheritance pattern combined with some kind of environmental influence. In short, they don't know and there's nothing they can do for us but there is a reasonable chance it will happen again.

It was a very very dark time; I literally don't know how I got through it. I realise now that for me trying again so soon was just sticking a plaster over a big gaping wound and that I hadn't allowed myself enough time to grieve for the first baby. I was just powering through, tunnel visioned. So much of what people on this post have said resonates with me. Some of these stories are like reading about my own experience.

Since i lost my 1st baby, within my group of friends there have been 14 healthy babies born. All uneventful pregnancies. I have felt so isolated and sometimes i'm just tired of being happy for other people. Sorry I know that sounds bad :S

It's not a success story for me (yet) in as much as i haven't tried again for another baby. It's taken me a very long time (a bit over 18 months) but i finally feel myself again. I went to some bereavement counselling last year (long overdue) and i can't tell you how much that helped. I would highly recommend it for anyone struggling to deal with the roller coaster of emotions that comes with this diagnosis. I initially tried to cope with this myself which in hindsight was not the best thing for me. I'm hoping to try again soon and I'm going to take inositol supplements as well as the 5mg FA this time to see if that helps.

DRSLondon Sun 25-Jan-15 08:44:50

Hi there

I'm so sorry for your loss.

I had the same thing happen last March and I was absolutely devastated. I waited 3 months and took the 5 mg of folic acid. I avoided the sun (which depletes your reserves and ate a high folic acid diet. Despite everyone telling me it was unlikely to happen twice I was a nervous wreck. The thought of it happening again was beyond frightening.
Thankfully we are pregnant again and all seems to be well and we had an excellent consultant at UCH London giving us extra scans and reassurance. I am now 33 weeks. I won't believe it will be ok until the baby is safely in my arms.
I know it seems like a frightening emotional rollercoaster but try to be positive/brave and distract yourself as best as you can while you wait.

Best of luck
D

www.wakeupsurvivesleep.com

Craschle Sat 24-Jan-15 12:32:04

I am looking for some hope too jard32. I had a scan at 12 weeks about 6 months ago. I was given the awful news that the baby had no heartbeat and had stopped growing at 10 weeks. Then Monday just gone, I had another 12 weeks scan. I had more hope that the pregnancy was fine and that the baby was going to be healthy. I was still nervous though. I watched the radiologist start the scan and then her facial expressions changed. I looked at her and asked if she was going to give us bad news and she said I'm afraid so. The baby had anencephaly. I am on 5mg of folic acid now and hoping to try again soon as I chose to TFMR. The most heartbreaking decision I have ever had to make. I am looking for success stories too to help me through this particularly difficult time. I too am hoping to have a sibling for my gorgeous dd who is 2 in March. I can imagine that it's going to be hard to not be nervous for the next scan and will probably walk on eggshells for 20 weeks until I get the all clear from the 20 weeks scan.

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.

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.

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.
x

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

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

www.wakeupsurvivesleep.com

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?
xx

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

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

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

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.

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

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.

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

*both due dates

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

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).

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

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

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

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 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.

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

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