Nuchal 5.3 and hydropic

(30 Posts)
fempsych Fri 18-Nov-16 08:51:05

Hello, not sure what the purpose of my thread is other than hand holding and asking for others experience.

Had an 11 week scan and all ok. Had 12 week scan yesterday and was actually nearly 13 weeks. Anyway, Nuchal is way over and midwife also mentioned extra fluid which looked to be around tummy.

I went straight off to have a harmony privately so have about a week before that comes back.

So now waiting to hear about bloods but given that Nuchal and my age (35) and the fluid, it seems
Obvious to me that it isn't going to be positive 'everything is fine'

Been crying on and off since yesterday. Unfortunately I was on my own at the scan as DH is away and back on Saturday. I donalready have one DD who is 3 1/2 and so I do feel lucky in that respect and trying to stay calm for her.

Any guidance around next week etc gratefully received.

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SarahOoo Fri 18-Nov-16 14:04:41

Hi fempsych,

I've been through similar (I'm 32) and when we were in the limbo stage (we had a CVS) I looked on here and there were high NT measurements that turned out all fine.

My bloods and NT of 3.4mm increased our risk of T21 to 1:85 and T13/18 to 1:78. Our results came back clear of those. We are having an extra heart scan at the 20 weeks scan.

Did they give you blood results or a risk number? Please remember they are all just risks and the Harmony test will give you a more accurate picture.

All I can say is breath and stay as level headed as you can to get through. It's very worrying and nerve wracking but talking about it helped me. Only inside the family but it helped. Do keep us updated and thinking of you

sweetchilli77 Fri 18-Nov-16 14:50:45

Hi, I had a 1-5 with T21. from NHS tests went to have Harmony and was given the results within 3 working days over the phone. All was fine, i was 1-10.000

Hopefully you get the results quick

fempsych Fri 18-Nov-16 15:14:56

Thanks all- I'm most worried about the hydrops really - of course plus the v high NT

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Chrisinthemorning Fri 18-Nov-16 15:18:51

I would advise that you give ARC (antenatal results and choices charity) a ring. They are brilliant. Do it now before they close for the weekend.
Thinking of you
(We had NT 11mm plus hydrops, it was t21 and we tfmr. 5 years ago and now have a little boy who is 4)

fempsych Fri 18-Nov-16 15:38:19

Thanks chrisinthemorning

My sense at the moment is that I will be going down the tfmr route although clearly it's going to take time to finalise that is the way forward.

I don't think I can bear to talk to anybody on the phone yet. Maybe on Monday. The NHS specialists want to wait for my Harmony results so the wait is on..

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amysmummy12345 Fri 18-Nov-16 15:43:25

flowers I had high nuchal test result and combined with bloods 1:5 chance of downs, CVS test came back clear, thinking of you OP, xxx


KittyandTeal Fri 18-Nov-16 18:38:26

I don have experience of a large nt measurement however, we got very bad news at our 20 week scan and dd2 was diagnosed with t18. We had a tfmr.

I don't have any useful advice except to echo the suggestion to call ARC. I know they're having some phone issues atm but they have an email service where they'll reply or you can request a call back.

DifficultSituation999 Fri 18-Nov-16 21:18:28

Hi, I had a very high NT of 4.6 a few months ago. Had dodgy bloods, too, and was given a 1:9 for T21. My baby turned out to be healthy, but I remember all too well what a dark time that was, and so I'm wishing you all the best. Take care x

Butterpuff Mon 21-Nov-16 16:35:25

I'm 34 and we had a high NT (3.9mm) at 11 weeks. Did the harmony which came back as low risk chromosomal abnormality. We then had a fetal heart scan which showed complete transposition of the great arteries.
Don't assume anything based on your results so far. Hang on to the hope that it may just be an abnormal reading. By 14 weeks our NT was normal, our baby is unwell at the moment. But with surgery will we hope be well again a few weeks post birth. Will be thinking of you.

Mybugslife Mon 21-Nov-16 16:47:56

I agree with others about calling ARC. I only found out about them after I had a tfmr at 21 weeks and I so wish I'd known about them after we had a high nt at the 12 week scan and went though all the tests etc. I was only 22 at the time.
They are amazing, and they help to clear your mind and put things in perspective.

I remember my screening midwife telling me after we'd got out nt of 7.9mm that there is a little boy walking around in the next town to us who had an nt of 9mm. He is a happy healthy little boy, it turned out there was an infection.

Really hope everything works out ok xxx

fempsych Tue 22-Nov-16 17:04:08

Just to update. The NHS bloods were lost so luckily, I suppose, I had already had the harmony done last Thursday. So the fetal medicine team are waiting for those although i think it was assumed my NHS bloods would be fairly high risk due to NT and my age, and the hydrops. I've been signed off work till I hear so at least I don't need to be sociable!

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fempsych Tue 22-Nov-16 18:19:19

Harmony back - trisomy 18 confirmed so CVS on thurs/fri and then a TFMR next week.

Anybody have any experience of this?

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amysmummy12345 Tue 22-Nov-16 18:27:20

flowers so sorry to here this, i have no experience but have heard good things about the ARC helpline xxx

amysmummy12345 Tue 22-Nov-16 18:28:25

(have experience of CVS but not tfmr meant to say)

Butterpuff Wed 23-Nov-16 10:59:37

So sorry to hear that fempsych. I don't have any experience of tfmr but I have read some really positive support threads on here so if nobody comes along to help do a little search. flowers

Mybugslife Wed 23-Nov-16 16:54:39

I'm so sorry. I really am. I wouldn't wish that on my worst enemy.
I have experience of both so am happy to answer any questions you have xx

fempsych Wed 23-Nov-16 18:56:19

mybugslife would you mind telling me how much time you took off work.

I'm so sorry you have also been through this.

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Mybugslife Wed 23-Nov-16 19:33:01

I took only 3 weeks off work. Including the week I was induced. So only 2 after the birth.
I wish I'd taken longer in hindsight. I also had a week off the week of the funeral but that was a couple of months afterwards.

In ways I felt it was nice to get back to some sort of normality but I definitely rushed it. It was hard having other colleagues not knowing what to say so being a bit weird around me. Xx

SarahOoo Wed 23-Nov-16 21:15:20

I'm so sorry to hear this fempsych. Wishing you all the best xx

Chrisinthemorning Thu 24-Nov-16 19:04:14

I'm so sorry flowers
I had a surgical tfmr at Marie Stopes (I was nearly 14 weeks) and had a month off afterwards. Physically I was fine but emotionally/ mentally I was a mess and had counselling.

Mybugslife Thu 24-Nov-16 19:59:20

I also recommend counselling afterwards. I left it until we'd had another loss (mmc at 12w) and wished I'd gone sooner. Best thing I've ever done x

fempsych Thu 24-Nov-16 21:18:45

chrisinthemorning would you mind sharing how you came about decision to have surgical termination? This is the decision I have to make tomorrow/Monday?

Seems advice is to take a few weeks off which would take me uptonannual leave over Christmas. Stupidly feel a bit guilty taking so much time off though...

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fempsych Thu 24-Nov-16 21:19:38

mybugslife I am so sorry about both your losses. I will take your advice and ask about counselling that they offer when I have my appointment tomorrow.

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Chrisinthemorning Fri 25-Nov-16 15:17:04

I just didn't want to go through labour, I wanted to go to sleep, wake up and it all be over. Possibly not very rational as risks are higher and we wanted to ttc again asap.
We have since had a healthy little boy who is now 4 though so all worked out ok.

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