Edwards Syndrome - surgical termination

[leighdinglady]

Hi all

We found out this morning (at 12 weeks pregnant) that our baby has Edwards and is almost certain not to survive. We're utterly devastated, as it took 18 months of TTC to get pregnant for the first time and we were about to start IVF when we got so lucky.
We've decided to opt for a surgical abortion as I don't want my first experience of birth to be this.
I've been given the option of sedation or general. Id prefer GA as id rather it just be over without me being aware of it. But GA carries more risks and can only be done in London (closest one to us). If I opt for sedation it can be done within a mile of home.
Has anyone any experience of sedated abortion? Is it horrific? Will I be alert and remember everything? Losing the pregnancy is traumatic enough without being alert as its dragged out of me

[xStefx]

Im so sorry, Ive not had a Sedated (only a GA termination) for health reasons. I cant advise but I just wanted to say how sorry I am. Sending hugs x

[leighdinglady]

Thank you. How did you feel after the GA. I'm reluctant to have GA if I don't need it but I'm not sure I can cope emotionally with being aware of what's happening

[MollyHuaCha]

So sorry

[Greaterthanthesumoftheparts]

I had a GA on Saturday for a MMC at 8 weeks. It was done late at night so I was kept in overnight but had they done it earlier would have discharged same day. I felt physically fine afterwards, no ill effects. I've never had anything under sedation though so can't compare. Sorry you're going through this.

[capercaillie]

I had a termination at 13 weeks with GA. the GA was fine - just like going to sleep. I felt fine afterwards. I was discharged the same day.

[WelshMammy123]

Hi. I'm so sorry you're going through this. I had a TFMR last October after a diagnosis of lethal skeletal dysplasia. I know how utterly devastating it is to find out something like this. I opted for labour and delivery but last April I had an ERPC under GA after a MMC. I recovered really quickly from the GA and was home the same day. I can't comment on the procedure under sedation but for me the option of GA was the better one as I didn't want to be conscious of anything happening. Choose what's right for you and what you feel comfortable with in this awful situation x

[MerryMarigold]

I'm so sorry. Is it 100% definite? My friend had a very high probability of Edwards based on blood tests, but her baby was totally fine when born. I think they had to wait till the 20 weeks to know that she was fine. 12 weeks is still so early. Do they know for sure?

[leighdinglady]

Yes it's definate. I had a high risk so we went ahead with the CVS (giant needle that takes some of the placenta to check). It's a definate result

[MerryMarigold]

I'm so sorry in that case.

[Behindthedoor]

[LBOCS2]

I'm so sorry that you're in this horrible situation.

I've had a 12wk MMC removed by ERPC under GA before, and I've had another procedure done under sedation. Personally I would go with the GA. I was in and out as a day case and I wasn't aware of it happening at all; I just woke up feeling relieved that it was all over. By contrast I was still very aware during the sedation and vividly remember the procedure itself which was extremely unpleasant if not painful.

[leighdinglady]

Thank you LBO. I've been booked in for the GA this week. I was so worried I would be aware of what was happening and it would make it all the more traumatic. It's good to hear I'm not be irrational or a whimp. So sorry to hear you've been through this. I can't quite get my head around how quickly our happy pregnancy has gone downhill

[MooPointCowsOpinion]

I'm really sorry you're going through this. Do whatever you need to so that it causes you the least heartache, GA sounds like the better of the two as you'll be asleep.

[jellyspoons]

I've had a d and c for mmc at 12 weeks done under local anaesthetic (to the cervix) and they offered gas and air but I don't think I actually used it. It was a bit sore at times but overall was fine, and had less chance of complications than a GA. I was scared at prospect of having a GA, I don't like losing control and have never had one. And I couldn't face having medical inducement of miscarriage, it would have been too traumatic for me psychologically I think. So this was my best option and I'm glad I did it. Day case procedure and felt back to normal within 7 days or so physically (apart from bleeding). Mentally took longer to get over. So sorry for your situation, it's so sad.

[fabulous01]

I had similar result at 12 weeks 5 day scan. We had cvs and I made decision to terminate. We didn't have option of surgical so I went through labour at 13 weeks and 5 days
Hell on earth is my description but.... if you can it is less impact on scarring which may be important for future
Mine was my first ever positive after 5 x IVF goes
I feel your pain and 3 years later i still can smell the room I was in. I highly recommend ARC. They got me through the hell of recovery and part of me has never managed to recover
But at minute I am holding one of my twins who is 20 months
I recommend lots of deep breaths and being kind to yourself. Xxx

[fabulous01]

Oh and as a pre warning we were given option to see baby and about ashes etc
I didn't see baby as the nurse that was helping me looked upset as she was only covering that ward. I thought if you were upset I would be ruined.
So I didn't. I got a picture. But on occasion I do wonder if I should have held my little boy.
I highly recommend reading the leaflets as that will all be explained and it is better to be prepared for the road ahead

Take care xxx

[leighdinglady]

Jellyspoons I suppose it depends what your fear is. For me the fear of watching them do it, or even hearing it knocks me sick. I think I'd be hysterical. I'm scared of the GA too but for me it's worth the risk as I know the memory would haunt me forever.

Fabulous - I'm so happy to hear you now have twins. How wonderful for you. We were due to start IVF and felt so lucky when we got pregnant. We get the second set of results next week to tell us if it's genetic, or just one of those horrible freak malfunctions. Please god let it be the latter!

[leighdinglady]

Fabulous - do you think you made the right decision not to see the baby? I don't think I want to. I almost don't want to acknowledge its real but then worry I'll regret it

[fabulous01]

We didn't get the genetic tests. I can't remember being offered them
People told me it was just bad luck.
That is one way of describing it!
Also speak to reception and ask not to be in waiting room for long. The hospitals sorted everything regarding dates but I asked that I could be taken straight to bad news room rather than sit in room full of pregnant women. I remember I couldn't even say my name but she knew it was me and I was whisked through
Also be prepared that your procedure may be near scanning room in pregnancy
I was "fortunate" as mine was viewed as a termination and my hospital did those in a different ward to maternity. But some hospitals are different
Again speak to nurses who will explain everything and do what they can.

[fabulous01]

It was the right decision at the time
Looking back..... not sure
My other half hadn't even thought about it being an option. I had wondered but didn't think it would be an option so I hadn't asked the nurse ahead of being admitted and when I saw the nurse being upset it made me think I couldn't do it
But I do feel guilty that I didn't hold my little boy who was very very poorly and will never be forgotten

[AvaCrowder]

You poor thing I can't advise, but just feel so much sympathy for you.

We have had this in our extended family.

[Cocopops2]

So sorry you re going through this😥I had to deliver my baby at 17 weeks which also had Edwards, no surgery possible was 8 years ago. Had medication in afternoon then back home to go back into hospital next morning where I had labour and delivery which was traumatic something I think about often😥I delivered her alone as midwife was on a break was awful. If you get to choose to be sedated or GA I'd take it. I'm very lucky 4 children 2 girls and 2 boys eldest 26 , youngest is 11 still think about my little one often. Sending you a big hug 🤗

[KittyandTeal]

I just wanted to say I'm so sorry.

I have no experience of a surgical termination but we lost dd2 to edwards at 22 weeks, we had a tfmr.

I wanted to say (after lots of research etc) that it it uncommon for edwards to be inherited (a Robertson translocation) it is much more likely to be a horrid case of bad luck. It doesn't make it any easier and you are a s very slightly higher risk in your next pregnancy but not so much that the doctors worry about it.

I also just wanted to point you in the direction of arc if no one has yet. They are a brilliant charity that support families during and after an antenatal diagnosis. They were so supportive and helpful for us.

[leighdinglady]

Thanks Kitty. I'm so sorry you went through this, and at such a late stage too.
I'm booked in for Thursday when I'll be 13+4. It's rubbish to wait and still feel pregnancy symptoms knowing what is going to happen.
I'm praying it's just bad luck. You have to wonder how many unexplained miscarriages Edwards causes before any scan can pick it up. We'll be nervous wrecks if we're lucky enough to get pregnant again