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

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.

Xx

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.

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 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

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