No idea

[mrsawhite]

Had our first nhs scan today. Was worried as we had a MMC last year. All looked good. Measuring over 13 weeks. But a huge amount of fluid. Advised to have cvs test. But feel like this whole thing is now doomed. Anybody been through similar? Just feel so sad. We've been trying for so long

[jmm499]

So sorry to hear this 😥 Did they give you details of where the fluid was and it’s level? Take some comfort that otherwise the baby looked good. There are definitely positive outcomes depending on where the fluid is seen, it’s level etc. Our son had increased fluid behind the neck and his NT measured 4.7mm at the 12 week scan (cut off for ‘normal’ is 3.5mm) - we had to wait until 16 wks for an amnio as they couldn’t safely access the placenta. All was clear as were his scans and he’s now a happy and healthy 11 month old. We had 2 MMC and a year of trying in between each pregnancy. Sending you lots of love - I know how devastating it is to get worrying news at your scan. I’m keeping everything crossed that things work out well for you and your baby 🙏🏻❤️

[mrsawhite]

Fluid was round the neck and ridiculously high. Over 8mm. Having cvs on Thursday. Thank you for replying x

[jmm499]

I’m thinking of you ❤️ You will find the strength to get through this. I have seen positive outcomes with higher fluid amounts so it can still be possible. Try not to lose hope but I know it can feel totally overwhelming. I hope the CVS goes ok on Thurs Xx

[mrsawhite]

I'm dreading the cvs. We have been told to have the conversation about what to do next. So I'm under no illusions really what's going to happen. ☹️

[jmm499]

@mrsawhite I’m so sorry you’re going through this 💔 Although an amnio is a different procedure, I found slow deep breathing and closing my eyes helped during it Xxx

[mrsawhite]

From what I've read it isn't painful as such. I'm so scared about what may have to happen next. Where we love no option for surgical procedure at this stage. Just doesn't feel real

[Fs252]

Going through something similar and it’s awful. Don’t give up hope just yet. I’ve also read of bigger measurements turning out to be ok xx

[Scirocco]

I'm so sorry you're going through this.

I'd echo the advice not to give up hope just yet. There are a lot of possible causes of fluid build-up and the outcomes aren't set in stone. Eg, there are some cases in which doctors can treat reversible causes, and in some cases things resolve without intervention.

If you're like me and a bit of a planner, it might be useful for you to think about what you would want to do in the event of different outcomes - would you want to continue the pregnancy regardless of the findings, would there be circumstances or diagnoses in which you wouldn't feel able to continue, would you want more information/ to ask for additional tests? There are no absolute right or wrong answers, only what's right for you and your family.

ARC has some helpful resources about diagnostic tests and making decisions following these. And you might also want to, if you're given a diagnosis, speak with a doctor who specialises in that condition and/or people who have been in that situation and could share their experiences. You won't have to make any irreversible decisions straightaway - you should always be given time to consider your options.

Thinking of you. 💐

[mrsawhite]

Thank you for your replies. Midwife told us on Tuesday to have the conversation sooner rather than later about what we would do. My feelings are that even if these tests don't come back with an issue there has got to be something wrong hasn't there? It's not even a little bit of fluid. The reading was off their chart.

Also worried about how much this test is going to hurt 😢

[Colinthecaterpillar35]

@mrsawhite I wish you all the luck in the world today. To hopefully reassure you ever so slightly, in my experience the test does not hurt it is just a little uncomfortable. That said, from the first injection of anaesthetic, the whole thing was over for me in about 2 minutes flat - I could not believe how quick it was and actually asked 'if that was it'.

Hope all goes well xx

[jmm499]

Thinking of you today @mrsawhite Xx

[TakeYourFinalPosition]

Best of luck today, @mrsawhite

[mrsawhite]

Thanks everyone. It was very painful. The staff were great though. Very sore to stand up etc at the moment. Just have to wait and see now

[jmm499]

Aww sorry to hear that 😥 Well done for getting through it. Take it easy ❤️ How was the baby looking today? Sending lots of love Xx

[jmm499]

Hi @mrsawhite I’m just wondering how you’re doing? I hope the soreness has eased a bit, thinking of you xxx

[mrsawhite]

Hey. Am ok. Still really sore when I stand up or sit down. Ok once I'm there! Go from being quite ok with it all and accepting. To absolute dread about the next part

[jmm499]

You poor thing @mrsawhite 😔 My heart goes out to you, I remember it so well. I hope the pain is slowly getting better - I’m thinking of you

[mrsawhite]

Thank you. I think the outlook is really quite grim. ☹️

[jmm499]

😔 you must be having a tough weekend - it’s so hard when normality carries on around you and you don’t realise what others are going through 💔😥 When do you get your first set of results? Will it be on Monday? Having the weekend to wait seems extra unfair somehow... Hang in there, not all is lost - despite what you may be reading about others in similar circumstances, this is your story and you could still be one of the lucky ones ❤️ I don’t know if that’s helpful or not, just really feel for you right now 😘

[Arrierttyclock]

Really sorry to read this. Will be thinking of
You and hoping the results are good xxx

[mrsawhite]

Thanks both. Issue is midwife has said even if they are clear, that something is still very wrong. So not sure how much reassurance we will get if they are clear

[milkshakeandchips5]

@mrsawhite I don't want to get your hopes up and we are still very much in this process but we had a NT of 7mm and a diagnosis (incorrectly) of hydrops at our 12 week scan. All subsequent tests have been negative although baby does have a very small VSD that was diagnosed at 32 weeks but is apparently not connected.

I found the initial midwifes I spoke to (the non-specialist midwives) really negative. They basically told me the baby wouldn't survive and gave me contact details for a termination. There was no guidance or specialist advice until I saw the Fetal Medicine team.

I still dislike going back to my local hospital because the experience at 12 weeks was so utterly awful at every single level.

Wishing you luck!

[mrsawhite]

Thank you for your message. We were very quickly given a specialist screening midwife who we saw on the day of the cvs. She was lovely. But I feel so uneasy about the results today. I am concerned that if these tests are clear. Just means it's something else. Which she agreed with. Did the fluid clear up on your scan?

[mrsawhite]

Bad news from hospital. Baby has pateus. So have to go through the inevitable. Am so scared about it. And devastated

[TheVanguardSix]

I'm so terribly sorry, OP. I've been through this twice... so, here's a loving handhold for you and .
ARC forum was my absolute lifeline. www.arc-uk.org/for-parents/arc-forum