Anyone else had a selective reduction - positive stories if possible

[Chattycat78]

Hi all. Not sure how unusual this is, but I guess I'll know by the response. 4 days ago I had to have a selective reduction in a dCDA twin pregnancy. The twin in question was very sick with a rare structural condition. The consultant told us she was fairly certain it would not survive, but we didn't feel we could leave it there any longer due to the risks to the healthy twin (miscarriage, prem labour etc). We were devastated but didn't feel we had a choice.

However, now I'm terrified of losing the other twin. Told 5 percent or so risk of miscarriage (procedure done at 13 weeks but the twin was measuring only 11.5 or so weeks anyway) and I'm on pins. it's also frustrating that there's nothing at all we can do! I'm having to continue hiding the pregnancy even though I'm now 14 weeks, in case the worst happens.

Anyone come through the other side of anything similar?

[KittyandTeal]

I don't have experience but I remember your original thread before you made your decision.

I'm glad you managed to make a decision that was right for you.

I wonder if it's worth continuing to hide this pregnancy? If the worst does happen do you really want no one to know or would you want support from friends and family? I only ask because if it's the latter you may as well start telling a few people who can give some emotional support for you now.

Have the doctors told you to do anything like rest and stay away from strenuous activities? Is there a window of when the danger of miscarriage is greatest, as in if the healthy twin is still hanging on in a few weeks does the risk go?

I'll be keeping my fingers crossed for you

[Chattycat78]

Thanks. Yes I remember your response- thanks for that. Our closest family and friends know everything. When I say I'm hiding it, I mean there are quite a few people on the periphery - eg people from work, less close friends etc who still don't know. I'm a "normal" situation I would probably tell those people around now, but obviously I feel like i can't.

The danger window lasts for about a month- most likely first two weeks but up to a month or so. After that, If we get that far, things will be looking better. The doctors have said it makes no difference at all what I do. Either it will be ok, or it won't. it sucks. Thanks for replying though.

[KittyandTeal]

Ah I'm glad that you have some people around that know. I totally understand, you don't want to be doing the big announcement and shouting it from the roof tops.

I was in a very different situation but the waiting knowing it's either ok or isn't but not knowing was so hard and exhausting.

I hope you are able to rest a bit, even if it makes no difference physically to if things are ok or not, you have been through a major, life changing event which is mentally and emotionally draining.

I know sands do a leaflet about dealing with the death of a twin. I think you can get it online if the hospital didn't give you one. It may be of some help (or maybe none at all)

[Aus26]

Hi Chatty,

I've been lurking on this post for a couple of weeks to see if anyone else was going to contribute, but no. I had a twin pregnancy reduction yesterday, but was much later on than you so not specifically concerned about risk of misscarriage than of preterm labour (I'm 28 weeks). I hope this note finds you a few weeks further along from your procedure and much more relaxed about your situation.

As for hiding one's pregnancy - I didn't even know that something was wrong until my 20 week scan, and the situation has escalated week by week from there till about 2 weeks ago when we realised that one of our babies was truly ill and had a terrible prognosis. There are plenty of people in my extended life - friends of parents, friends of friends, facebook, who now believe I am expecting twins (I'm huge) and undoing that is going to be very painful, so I would urge anyone to keep the pregnancy a secret as best they can for as long as possible.

Anyway maybe I'm reaching out for a bit of solidarity - not sure. Just hope you are still pregnant and growing in confidence every week that whilst this is the crappiest thing to happen to a person that you are going to get a happy beautiful baby at the end of it, and right now that is the only thing that matters. This is the only thing that is keeping me going.

xoAus

[KittyandTeal]

Aus26 I have no experience but I just wanted to say I'm sorry you have had to go through this 💐

[SoySauceAddict]

I had a selective reduction at 17 weeks for a similar reason... Amazing six year old girl twirling around the room at the moment.

Hope it all goes well...

[Chattycat78]

Aus26- sorry about delay in response. I had given up on this thread because it seemed that no one else was in a similar position. Am so sorry you had to go through this at 28 weeks! It must have been a mega shock! I can understand why it will be so difficult undoing what you've told people too. How come the problem took so long to diagnose if you don't mind my asking?

I'm 18.5 weeks now and just had another scan today. So far everything is going ok (fingers crossed) but I'm still very worried because of what happened and have still not told quite a few people. Eg my boss still doesn't know, and it's getting increasingly difficult to hide it!

Are you having lots of follow up scans to check all is ok?

[Aus26]

Hi Chatty,

thanks for the reply. I'm glad that your still doing well and the pregnancy is progressing normally now.

The termination happened late for a combination of reasons. Firstly, I didn't know anything was wrong till 20 weeks, we then had an amnio but genetic testing came back inconclusive. Then at 25 weeks I started taking on a lot of fluid very quickly, just in the amniotic sack of the baby with abnormalities - this is an indication of neurological issues (ie not being able to swallow properly) so that combined with his head size (under 5th centile) as well as the physical deformities he was displaying on his scan added together to give him a pretty awful prognosis. In addition the fluid build up was starting to put the healthy baby at risk so at 27 weeks after 2 weeks of seriously rapid fluid retention our decision about whether to progress the pregnancy with one or two babies became extremely urgent and we made the horrendous decision that I shared in my previous post.

I've been scanned weekly since 20 weeks anyway, and am continuing to do so now. In addition the hospital is accommodating me weekly so the baby's heart beat can be monitored for further reassurance - apparently I could do this every day if I were so inclined, but I'm trying stay calm and rational. My husband and I have access to a psychologist at the hospital who we are seeing every couple of weeks as well for emotional support. I will deliver my daughter via ELCS at 37 weeks - I could stay pregnant for longer but they will allow me the caesarian on the early side for my mental health. The care we are getting is absolutely incredible its just horribly sad that it had to happen to us.

I wish you the best of luck for your anomaly scan and then I hope you feel like you can relax and start to enjoy your pregnancy more.x

[FrenchMagpie]

Hi Chatty

Apologies for being so late to this but I wanted to share my story in the hope that it gives you some reassurance over the coming weeks.

I had a selective reduction in the summer of 2014 after one of my twins was diagnosed with T18. I was 12 weeks and we were told that the sick twin was unlikely to make it to term and that it would risk the survival of the healthy baby if it were to die later in the pregnancy. It was the most difficult thing I have ever had to do.

Like you, I was absolutely terrified of losing our healthy baby and while that fear stayed with me for some time, it did diminish as time passed. I kind of went in to a state of suspended animation - I had quit my job whilst all of this was going on and I simply withdrew from ordinary life for a while. A self preservation thing if you like where I just focussed on my surviving baby and my existing family. Gradually I was able to come to terms with what had happened and start living my life again and start preparing for our new baby's arrival although I could never totally relax through my pregnancy. My consultant was brilliant and I had regular scans (every 2 weeks or so) but he would have scanned me more often if I'd asked.

My DD was born by EMCS after my waters broke at 35 weeks. I have never established if the reduction or CVS was the cause of my waters breaking early but its certainly possible. But she is here, and she is healthy and she is perfect. One day we will tell her of her twin sister and I am very open to family and friends about what happened. People have been unfailingly supportive and non judgemental.

I don't want my post to sound negative because it had such a positive ending but I wanted to share as I too was desperately searching the internet looking for similar stories. I think its quite an usual situation to be in and I really hope that you have a happy ending too.

[Chattycat78]

Thanks French. I appreciate that. It does help to hear about other people in similar situations. Interesting you went into labour early- I'll have to think about that later on maybe. The hospital have been great- and like you the consultant has been brilliant. Am now 20 weeks and keeping my fingers crossed!

[Pickwen46]

Hi, i know its been a while since anyone posted on here but i just wondered how people got on? I'm twenty weeks pregnant with non identical twins. I had my scan last Thursday and it showed that one of our babies had a severe heart defect and cysts on its brain. The doctors think its a chromosonal issue but can't be sure as i had a low risk harmony test. We were refered to Great Ormond Street who saw us the next day. They were lovely and did a detailed scan on both babies and confirmed that one baby did have a severe heart defect. We were devasted as had been trying so long for a baby and had been so excited to be having twins. The hospital have offered us a reduction this week as their advice is its better to have it now than wait. We have agreed that a reduction is probably for the best as the baby is so poorly, but i am really worried about losing the healthy baby too. I am also unsure of what to expect on the day and after. Could anyone help?

[MissBeaHaving]

Hi Pickwen,
I'm so sorry to hear that you are going through this,I haven't been through this particular problem in pregnancy (have had other issues) but didn't want to leave you unanswered.

I don't know if the ladies who have posted this are still around ?
If they are not you could try posting a new thread of your own so that it is easily visible on the board,a lot more posters will see it & realise it's a current question/post wanting support.

I really hope things go well for you & that other posters can be more helpful than me

[KittyandTeal]

Sorry you are going through this.

I would agree with missbea, try starting your own thread and you might get some more responses.

I have experience of a tfmr for chromosomal issues but not in a multiple pregnancy I'm afraid.

Have you tried arc? They will have someone with similar experiences that they can out you in contact with.

[Chattycat78]

Pickwen I'm still here. I started this thread. I'm sorry you are in a similar situTion to the one I was in at the end of December.

It's a horrible decision to make and we agonised over it. But in the end we decided that the overall outcome was the least worst if we went ahead with the reduction- which we did. The procedure was quick and pretty much painless. To be totally Homest the worst bit was afterwards and for the following few weeks- waiting to see if the other baby would be OK. We had scans every week or two though so the fetal medicine unit really looked after us. I'm now 25 weeks and fingers crossed still ok (touching wood still obviously). Feel free to private message me if you want any more info. I'm so sorry it's really horrible and a shock- worse at 20 weeks I imagine. I was 12 weeks when they found our issues.

[Chattycat78]

Also just to ask- what have they said about the risks of reduction? My clinic were great but they very much didn't want to sway us one way or another. They just gave us the facts and the risks and left it up to us. The alternative we were offered was to wait until 32 weeks and then do the reduction but this would have been impossible for me.

[Aus26]

Hi Pickwen,
Sorry I haven't replied, I've been having a baby this week! I carried my surviving twin to 37 weeks and delivered by section on wednesday.

In terms of the procedure itself, I actually had to go through it twice, or at least there was an attempt to do it, but there was too much fluid around the sick baby so they drained a lot and rescheduled the procedure for a few days later. The second time they were able to drain more fluid and complete the reduction. I would be asking your doctors how they plan to anaesthetise you. The two procedures I went through were in 2 different hospitals - the first there was an anaesthesiologist with me in the procedure making sure I was fine and she woke me up immediately after the failed procedure finished. it was a really good experience and I was completely alert almost immediately. The second procedure at a different hospital was done in a different way, I was heavily sedated, was out of it for hours after and was also sick all over myself. I can't medically tell you the difference between how they did it, but I'd ask in advance how that aspect of the procedure is going to work. After both procedures I stayed in hospital over night as first 24 hours is the most likely time for you to go into labour and obviously being there they can slow or stop labour much easier than if you are at home.

As far as the outcome of the reduction, the decision and the procedure is horrifically sad and will continue to be for a long time, but the outcome was the right one for me and my family given the shittiest of shitty circumstances. And as of wednesday I have the most beautiful baby girl I could dream of.

Goodluck making your decision - it is a highly personal one so make sure that you are doing the right thing for you.

[Chattycat78]

Congrats aus- glad you had a happy outcome after a horrible thing happened to you! Xxx

[Pickwen46]

Thanks for your messages. Congratulations Aus that is great news! And Chattycat I'm glad that your pregnancy is progressing.

I had my selection done last weds. It was a bit more difficult than planned. Just as they went in the baby moved and made it difficult for them to do it. It ended up taking over an hour as they kept having to move the needle. They managed to do it but weren't sure if it had worked. In the end I had to go out for half an hour to see if the baby would move but when we came back in, our little boy had gone.
I only had a local in my tummy and was awake the whole time but did feel sick during it.

They told me that I had a 3% chance of miscarriage and that is most likely to happen in the following two weeks so now we are incredibly anxious. To top it off I have come down with the flu!

The other baby is moving about which is reassuring but it feels odd not feeling my other twin anymore. I feel quite empty. I've not really digested what has happened yet, when I think about it it overwhelms me still.

Just taking each day one at a time xxx

[scoobyloobyloo]

hi there, I'm in a similar predicament to you with one sick twin (no kidneys, no lung development, poorly heart and just found out today that it's brain is full of fluid).

We knew something wasn't right at the 12 wk scan but by the time it was properly diagnosed at 16/17 wks we were told the risk to the whole pregnancy was a minimum of 15%

The result is that I am now 28 wks pg and am having a selective reduction at 32 weeks.

It's been a horrible process but reading about others who have been through it is very cathartic. I would very much like to go to bed for 12 weeks until my healthy little girl arrives but unfortunately this isn't logistically possible!

[Pickwen46]

Hi scoobyloobyloo

So sorry to hear about your poorly twin. I know how horrible it, we were so excited at the thought of twins and then to find out one was so ill was heartbreaking.

Before we had the selection we tried to enjoy the time we all had together. Obviously we were very sad but I tried to enjoy those last few days feeling our little boy move about.

It was really hard when we said goodbye to him. It was just over three weeks ago and I think about him everyday. I am really worried about the birth and how I will feel.

I am always anxious about every pain I feel, luckily my other baby moves quite a bit, but I am due a scan next week and I am petrified.

I hope the rest of your pregnancy goes as well as it can xxx

[Chattycat78]

Hi scooby- am so sorry you're going through this too- especially because it sounds like you had to wait a long time to find out what the problem is. I hope the reduction goes ok- it's not the nicest I won't lie- but you have to try to think that you're doing the least worst thing if that makes sense, and you will still have a happy outcome at the end of it. It is awful though when you just get used to the idea of having twins and then this happens (that's how we felt) . Good luck.

[scoobyloobyloo]

Thanks for your kind words. It's such a terribly strange predicament to be in. There is 2.5 wks now til the termination and trying to make the most of the time between now and then. Pretty hard as I'm so physically and mentally exhausted by it all. How are your pregnancies
Progressing now?

[MarceGFlower]

Hi Everyone... I hope someone still sees this group.

I don't usually write on boards.. but I guess this position that we all find ourselves in its hard and makes you look for answers everywhere.

Im pregnant with twins 17 weeks and one of the twins had a chromosomal problem. we had blood work done at 11 weeks came back positive then amnio done last week and confirm the results.. one baby has a problem.

we have the selective reduction on Friday the 17th and even though im calm im just so anxious I want this to pass... we waited so long to get the amnio and then wait for this again... and then wait again and hope baby 2 make it through the whole pregnancy.

im very jealous of some people who 100% enjoy their pregnancy... i been hiding my pregnancy from everyone.. and its just becoming insane now 17 weeks with twins... its been hard for me and my husband...

i hope everyone is doing better! and enjoy their pregnancy...

thanks

[Aimski3]

Hi, I have just joined Mumsnet appreciate this is an old post so not sure if I need to post a new one. I am 16 weeks pregnant with identical boys. At 12 weeks we were told the devastating news that one of our boys has structural issues - complete LUTO. The Consultant tried unsuccessfully to drain his bladder. Since then at our weekly scans his bladder has got bigger to the point it's up to his chest. There is now severe reduced amniotic fluid around him We have agonised over what to do but end result is he would likely not make it to birth or if he did would have renal and lung failure amongst other things so would be on life support. We also have to think about ensuring our other little boy whom appears healthy remains safe. I am booked in for a SFR next Thursday. I will be travelling down on the train and back the same day and Consultant has assured me this is normal practice and safe. I will then rest at home. Thank you for those that have shared their experiences above. Wanted to share my situation as I don't know anyone else whom has gone through such a painful and agonising decision / procedure. I'm trying to stay positive for my 4.5 daughter and our other little Twin boy. We just need to take the next week day by day 😔 For those of you whom are out the other side of your own situation and some of you will have a healthy baby to celebrate with, I wish you a happy and healthy festive period.

[AerodactylsAssemble]

Aimski, I am one of posters above, but have name changed since previous posts. I'm sorry you are having to go through this, but you are doing the right thing and focusing on your healthy twin. Mine is now 9 months old and doing very well.

The rest of your pregnancy will be difficult and stressful - I thought of my ELCS as a finish line I was slowly progressing towards. I was offered counselling through the maternity hospital and found it helpful.

I dread the questions I'll get one day about what happened (the fact that she is a twin will never be a secret) and I think on my son often and what could have been, but life does go on, and having a baby in the house is a very effective distraction. Goodluck for next week - I don't need to tell you that you are doing the right thing for you and your family, you know you are to have gotten this far. x