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NT lots of fluid around body and other twin vanished - not much hope

(35 Posts)
drkatea Thu 21-Aug-14 23:35:51

I'm new to mumsnet but have looked at lots of posts and advice since I found out that I am pregnant. Had some really bad news and so have decided to write to see if anyone has any experience in relation to the outcome of my scan.

I'm 46 and pregnant for the first time. My husband and I (married last year after finally finding a man I truly wanted to commit to and have babies with) were thrilled when we found out that I had conceived naturally in June. I had the first scan at only 8 weeks and found that we had fraternal twins. Initially we were a bit shocked but then thrilled that we were expecting 2. I was high risk in every way but the preganancy seemed to be going really well and felt fine.

Yesterday we went for a 12 week scan and found that one twin had vanished and the other was in a really bad way. We weren't given a NT measurement and I forgot to ask what the number was but the baby has fluid all around the top and back of the head, right down the back and on the belly. "Not good at all" I was told and I could see that for myself. I guess they thought the actual measurement wasn't particularly relevant to us as we were told that it was unlikely to survive another week. We were advised that some couples would choose to terminate at this point and medical termination was described an offered as an option.

However, as you might imagine, we're not ready to give up just yet. We're going back for another scan next week and will get the results of a blood test for infections which are a possible cause. If the baby does survive, then we'll have either a CSV as it can be done quickly or wait for an amniocentesis at 15 weeks. Of course, the chances of Down's or another genetic disorder is pretty high given my age. A heart defect is also possible, as is a host of other things.

I have searched and searched and although I have seen posts describing happy endings in which genetic tests are negative and the fluid problem resolves itself, this tends to be where fluid has built up later in the pregancy and none involve a vanished twin. Many stories end sadly of course.

We're trying to stay positive for our surviving, though very sick, twin but I'd appreciate hearing about any similar experiences, no matter how they ended.

JiltedJohnsJulie Fri 22-Aug-14 12:44:44

No advice sorry but I just didn't want you to go unanswered. If it helps any I had a medical termination with my first pg and then had a healthy DS within a year.

offbeatgirl Mon 25-Aug-14 19:47:34

I had a similar experience, albeit with a singleton pregnancy: the 12 week scan showed up fluid surrounding the head and stretching down the back, as well as fluid on the belly. In my case, a CVS revealed that a chromosomal problem (Turner's syndrome) was the cause, and I chose to terminate because the build up of fluid in the baby's body continued and reached a level where she wasn't going to survive to birth (other cases of Turner's have happier endings: the prognosis of babies who do survive to birth with this condition are extremely good).

However, as you note, there a range of possible causes, with different outcomes: there are some infections which apparently cause similar symptoms, and in some cases the baby can recover with no long term adverse effects. And like JiltedJohnsJulie, I also fell pregnant again fairly soon after the termination.

I will keep my fingers crossed for you.

superbaghag Wed 27-Aug-14 22:52:14

Similar story here. Atypical head structure. Various bleeds inutero all through the first 18 weeks. 2 vessel cord which is also a soft marker for problems.

She's 8 now and an amazingly intelligent and musical child.

Don't panic

drkatea Sat 30-Aug-14 18:10:21

Hello again,

Thanks for the replies. Had another scan 3 days ago and the problem seems to have worsened. The NT which I found out was 6.5mm in the first scan has increased to 7mm a week later. The baby has a cystic hygroma and hydrops which has extended to the pleural cavity so the lungs are likely to be damaged if it doesn't resolve itself soon. We also saw that the other twin hasn't vanished after all but is still there having died at around 9-10 weeks. I do hope that doesn't present additional problems for the surviving twin.

Blood test came back negative for viral infections and I'm having an amnio on tuesday.

So it's not looking good but I do find it incredibly annoying that the consultant is so focussed on the baby's death. Last week he said that the baby was not likely to survive a week but it did. He said the same thing this week and talked about a termination last week before I was even properly aware of what was going on. He just said the baby was "very sick" - hardly the kind of information to base a decision to terminate on! I'd done a lot of research between the first problem scan and the second, and asked a lot of questions in the second. And I told him I don't want to hear him tell me it won't survive another week again. My husband and I got the message loud and clear the first time around and I'm permanently on miscarriage alert which is pretty stressful.

We should have the preliminary results from the amnio on wednesday so we'll know if it's any of the most common syndromes pretty soon. I was thinking it would be worse to find out that there was nothing wrong genetically, in some ways, since it would make the decision about what to do next much more difficult. But the message from Superbaghag provides some hope should that be the case.

I'll update once we have news about the amnio. Despite the prognosis, this baby doesn't seem ready to give up yet.

Figuringitout Sat 30-Aug-14 21:23:42

Just wanted to send you some love at this horrible time. In my experience it was confusing, lonely and unbearably sad.
Talk to as many medical professionals as possible. If you havent already, conctact ARC (Antenatal Result and Choices). They are a brilliant organisation that will discuss your options as well as simply allowing you to sob down the phone.
I know it is impossible, but try to stay away from Google. It's either miracle or horror stories. Your story will be your own and only you and your partner can make the choices that are right for you.
My story is that I had a termination in July after the NT was 9mm and I was advised that there would be no positive outcome this time.
This time.
Next time will be another story and one I am hopeful for.

blacktreaclecat Sat 30-Aug-14 21:28:58

I'm so sorry you are going through this.
We had similar, a 11mm nuchal with severe hydrops. It turned out to be trisomy 21 and we had a termination for medical reasons at nearly 14 weeks. I didn't want medical management so turned to Marie Stopes who did a surgical.
We have since had a beautiful healthy DS, now 2.
ARC are an amazing charity, please give them a call
Thinking of you x

LuckyAugust Sun 31-Aug-14 13:48:19

I'm so sorry to read of the horror you're going through and feel that tug at my heart because we experienced a similar agony at the beginning of the year. Our unborn daughter had an nt of 6.88 and a cystic hygroma. A week later we had confirmation of a rare chromosome disorder. Things didn't work out for us that time but it doesn't mean it always works out that way.I remember when doing my research there was a lot of bad stories but there was the 'miracle' stories too. Try and keep strong. Sending big hugs xxxxx

September60b Sun 31-Aug-14 19:15:42

Hi op, I don't have much in the way of advice but wanted to say that I am so sorry you are going through this. I had a CVS which fortunately turned out to be all clear, but I do echo the poster above re avoiding google. I made the situation ten times worse for myself think about the 'maybes'.

I hope the amnio goes well, it's really not as bad as it sounds x

drkatea Sun 31-Aug-14 23:35:48

I know the advice from you September60b, and others, about google is wise but once started is difficult to stop. But I wanted to say that I'm pretty good at keeping a balanced view and don't just react to the last thing that I've read. I've looked at everything from academic papers to blogs and posts. I want to know what is realistic to expect, while at the same time taking note of the more positive outcomes, as I neither want false hope, nor to give up on this baby completely and down a bottle of wine wink just yet if there is even the slightest chance that things might turn around. I think that's probably a balanced view smile.

Nessalina Mon 01-Sep-14 00:00:44

So sorry to hear you're going through this OP thanks
I had a very similar experience to offbeatgirl with my first pregnancy last year. Severe hydrops at the 12 week scan, told that the baby was 'very poorly' and consultant gave us a 1 in 20 chance of them making it to term. We decided to have CVS to determine if there was an underlying issue, and it turned out I was carrying a girl with Turner's syndrome. The chance of survival was upped to 1 in 10 after she made it through to week 15. Then we saw our midwife for a routine visit and she was quite brutal really about her experiences of Turner's syndrome and hydrops (three previous mothers she'd dealt with, all had miscarried, one very very late). I really really hated her for being so honest, but I think I needed a reality check, and in the end we made the difficult decision to terminate.
The consultants we saw were very kind and understanding, but it was obvious in hindsight that they were thinking our baby had no chance. You obviously got one who is a bit more outspoken hmm It's not what you want to hear, and they should really keep their opinions to themselves! It's important that you come to a decision that's right for you once you have all the information.
We had a medical TFMR at 16 weeks which was better than I could have expected, very sympathetic NHS team who were great throughout.
Conceived again within 4 months, and I'm currently 31 weeks along.
As others have said, Google will give you only miracles and tragedies, but I really hope yours becomes a good news story xx

Tranquilitybaby Mon 01-Sep-14 00:02:16

Thinking of you, I hope you get some answers this week x

helensburgh Mon 01-Sep-14 00:08:13

Having gone through similar experience with terrible scan news and amino I can only send many hugs.

It is such a hard time. We had a positive ending which imkniwisnt always the case.

CointreauVersial Mon 01-Sep-14 00:08:22

I can't offer any advice here, but my thoughts are with you. thanks

BlackbirdOnTheWire Mon 01-Sep-14 00:41:34

Rally sorry you're going through this. It is agonising.

I'm sure you're only too aware that the odds are really not good. That said, our consultant told us that whilst we shouldn't expect the pregnancy to last more than a week or so more, and offered a termination if we wanted, he also said that whilst there was a heartbeat there was always hope and whilst the hb remained, he'd do every test under the sun if that's what we wanted.

We were in a very similar situation, though it was my 5th pregnancy (3 MCs, 1 DC). I'd had an early scan at 8w after bleeding and losing what looked like a small sac (and I should know, I'd already seen 3). The NT measurement was 4.2mm at minimum with a cystic hygroma of over 9mm from the tip of the ear to just below the shoulder. No hydrops though. We didn't want to terminate until we were absolutely certain that the baby had no chance so took up the offer of tests.

My DC2 was one of the miracle stories. Amnio was clear, tests came back fine. The hygroma spontaneously resolved over several weeks. I did go into PTL at 24+2 for no obvious reason - but again we were lucky and the anti-contraction drugs worked. DC2 was born without any drama by ELCS at 38w (not related to that pregnancy - we'd nearly lost DC1 during EMCS at 42+3 so they weren't risking a repeat). He is now a perfectly healthy 2yo. We are so lucky - and I will forever be grateful to the consultant who told us to be realistic in our heads but keep that hope in our hearts. I don't want to give false hope though - we've been there before too and it's heartbreaking.

Wishing you lots of strength.

BlackbirdOnTheWire Mon 01-Sep-14 00:46:05

My excellent consultant also suggested a glass (not a bottle!) of wine would only be beneficial and would help to lower cortisol levels. So I had a glass (it was our wedding anniversary, and also the anniversary of a previous D&C), guilt-free. It helped, a little.

Nessalina Tue 02-Sep-14 08:34:33

Good luck with the amnio today OP smilethanks

Mama1980 Tue 02-Sep-14 08:53:28

Hi good luck with the amino today. My heart aches for you it's such a traumatic time.
I second the recommendation of ARC, arm yourself with as much information as possible.
I'm afraid in this situation there tends only to be tragic or miracle stories, I am one of the miracle stories. I was told by drs to terminate for amongst other reasons fluid build up, and high risk of chromosomal disorder, I declined CVS and amnio, deciding to just wait. I was heavily pressured to terminate, but I also had a lovely dr who said he thought I was wrong and that my baby had less than a 20% chance of any meaningful life but if Thats what I wanted to risk then He would be there all the way.
At further scans (I was hospitalised and scanned daily as for other reasons my life was at risk) my baby showed fluid in the abdomen, echogenic bowel and a lot in utero bleeding. But the fluid at his neck had gone. My pregnancy was unsustainable and I went into labour at 24 weeks to the day, my son had a fight on his hands but is now 18 months and perfectly healthy.
I wish you strength at this awful time. If I can be of any help at all please feel free to ask.
x

drkatea Thu 04-Sep-14 22:11:20

Worst news I'm afraid. The amnio was rescheduled for today. Found the baby's heart had stopped beating a few days ago. Will deliver the two of them on tuesday. I can't begin to imagine quite what that will be like. It will be my first and possibly only delivery. Hardly seems real at the moment.

BlackbirdOnTheWire Thu 04-Sep-14 22:30:40

I'm so sorry. From my experience (passing a sac at 16w on holiday, so no access to medical services, but the embryo hadn't grown properly and so it was smaller than it should have been), the cramping was bad - but you will be given every painkiller they can give you. Don't be afraid to ask for more; they'll be able to give stronger stuff than for live birth.

Did they give you any options, e.g. tablets, or D&C, or are you too far along for a choice?

Please, try to stay positive for the future even though right now you are devastated. Both my DC were conceived the cycle following a miscarriage (DC1 2 weeks after passing the sac at 16w) - I may have got slightly obsessive about ovulation kits and monitors, but it gave me something to focus on, other than the grief and sense of injustice, and it felt like I was doing something to move forwards. That may not be how you feel right now, but I wanted to say it in case they give you any crap about waiting 3-6 months (which they've done after all my miscarriages and which I have ignored with no negative consequences).

flowers

puddingisgood Thu 04-Sep-14 22:30:45

So sorry to hear this OP. flowers

Tranquilitybaby Thu 04-Sep-14 22:32:05

Oh that's heartbreaking, lots of love and strength to you xx

Sapat Thu 04-Sep-14 22:49:19

So sorry OP, rough times. I remember well the worry of the CVS and the amnio, spending weeks in limbo not knowing if baby would survive/need to be terminated. I agree with pp that you will be at your most fertile after this.
Really really hope things turn out well for you! And thx for updating us, it can't have been easy.

CointreauVersial Thu 04-Sep-14 22:50:08

So sorry to hear this, OP. Wishing you strength for Tuesday. thanks

Nessalina Thu 04-Sep-14 23:32:41

So sorry to hear your news sad Strength to you and your DP thanks
I agree with what others have said, don't give up hope, keep trying and soon. I hope Tues goes as well as it can - if it helps at all, delivering at 16 weeks was far less painful and scary than I thought it would be, I hope that's the case for you too xx

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