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1 in 11 chance of Pattau/ Edwards

(50 Posts)
theonewithnousername Sat 31-Oct-20 20:29:28

Has anybody had any similar odds?

Wasn't expecting anything like this, midwife called me yesterday and said that 1 in 11 for trisomy 13/18. Downs was low, and also low Papp-a

Can't stop crying and worrying. My CVS is booked for Monday. How long do you typically wait for results?

I am going through this alone and
This is killing me 😢

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weivfgotthis Sun 01-Nov-20 08:20:21

I am having a similar experience
It's a really worrying time
I'm having a NIpT next week and then depending on the results we will go for the CVS.
So sorry you're going through this alone
Keep posting here
And there are lots of positive stories to read too

legalseagull Sun 01-Nov-20 08:33:32

I'm so sorry you're going through this OP. I went through it 3 years ago. I had 1:14 chance. I have a CVS on a Friday and got the results Tuesday. Sadly it wasn't the result I wanted and it broke my heart. I really really hope you get a different result. There's still a 91% chance you baby will be just fine

CupcakesK Sun 01-Nov-20 08:37:32

I don’t have any experience, but couldn’t read and run. Here for a hand hold if you need it.

A friend gave birth to a baby with Down’s unexpectedly and they are managing ok, although different to a non-Down’s baby, and there are really good support groups out there.

When you say you are going through it alone, do you have a parent or friend that can attend appointments with you (if that’s allowed)?

I hope you get the news you want. Whatever decisions you make though are absolutely fine flowers

theonewithnousername Sun 01-Nov-20 11:32:41

Thank you for the replies, it really helps to talk to others in the same boat although I'm sorry you have all also experienced this 🙁

The waiting and not knowing is the worst most frightening thing I have ever experienced. I have a few friends but they all have work and I don't want them to lose pay in these times because of me. Other than that I have my sister and grandparents who are all isolating awaiting COVID test results.

How do you deal with the anxiety? I'm having palpitations, feeling sick, breathless. Then going through periods of crying my eyes out to thinking right, if the odds to win the lottery were around 90% you would put it on right?

I wish someone would knock me out and wake me up with the results. Xx

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ReadySteadyBed Sun 01-Nov-20 11:37:52

I’ve been through this although had a happy ending and the waiting is the worst. It was the worst time of my life. You have to think of the worst case scenario and what that looks like, how you will deal with it etc. That will help you feel more in control, as awful as that is. Deep breathing and just day by day, distract yourself too. It is out of your control so you have to do your best to keep a balanced mind.

My results came back within about 60 hours I think. I’m so sorry to hear you are going through this too, mumsnet really helped me, I didn’t post at the time but reading others experiences did help. Keep us posted x

CooperLooper Sun 01-Nov-20 11:49:19

No personal experience, but a best friend had an amniocentesis recently for the same thing. Her appointment was 10am on a Weds and she had a phone call with the results 9am on Friday, so the wait wasn't so long.

Good luck x

Tig2010 Sun 01-Nov-20 14:38:36

@theonewithnousername hello, and I’m so sorry you’re having to go through this. We are too and it’s really hard. I had a CVS last Tuesday at around 4pm and the first set of results came through on Thursday afternoon, so around 48 hours. We are expecting to have to wait until early next week for the second set of results. Feel free to ask any other questions about the CVS. It really helped me to tell a few close friends. Even if they have busy jobs, I’m sure they’d want to be there for you at such a difficult time.

In terms of coping, its been really hard and I found it very difficult to keep my mind off anything else whilst we were waiting for the first results. I’ve found that just focusing on each step and not thinking further than that has helped though. I’ve thought a bit about what we would do if things don’t turn out well, but tbh I don’t find that helpful anymore because I’m not sure this is something I could ever steel myself properly for. I’m trying to stay in the moment by watching lots of comforting films and tv programmes and also trying to eat well, rest and do gentle exercise whilst giving myself a free pass to be lazy if I want to be. Everyone is different though. Be kind to yourself! Wishing you all the best.

theonewithnousername Sun 01-Nov-20 15:23:57

Thank you so much for the replies. It just doesn't feel real. Like surely they are wrong.

@Tig2010 you know you said the second set of results what does that mean? I was given no information at all just an appointment.

What is the cvs like? Is there anything I should do before or after?

Thanks again to all of you xx

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Tig2010 Sun 01-Nov-20 15:39:38

@theonewithnousername the NHS has some good online guidance about the test. They’ll scan you first to make sure that your placenta is in the right place to do the test. I then had a little local in my tummy and then they remove some placental fluid. It wasn’t painful but was a bit uncomfortable for a few minutes. All in all I was in there for around 40 mins but most of that was talking through the process, scan and resting a bit after. The actual fluid removal process takes around 5 mins. Once they have the fluid you’ll lie down for 10/15 mins and then they recommend you rest afterwards. I don’t think it matters if you don’t, but I was glad that I did because I felt a bit sore and tired afterwards (more from the stress of it all and lack of sleep than the test itself!). I also had quite a few period pains that day and the day after.

In terms of results, they can test more quickly for Down’s, Edward’s and Patau, or anything else that involves additional or missing chromosomes. The second set of results that we’re now waiting for are missing bits of chromosomes. We were told to expect them two weeks after the test. I don’t know if they always test for the same stuff, but it’s worth checking when you go in (although I would hope they’ll go through all this with you).
I don’t think there’s anything specific you need to do before the test - I didn’t at least!

theonewithnousername Sun 01-Nov-20 19:05:56

@Tig2010 thank you so so much x

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theonewithnousername Sun 01-Nov-20 19:06:34

And fingers crossed for your results @Tig2010 x

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theonewithnousername Mon 02-Nov-20 14:56:18

I am back from having the CVS. I went alone and I must say the staff at the RVI are absolutely outstanding. One of the lovely midwifes didn't leave my side and held my shoulders the whole way through. They were all so lovely.

The procedure itself wasn't so bad, I felt pretty numb so the only bit I felt was when they were actually in the womb. I watched it on the screen above my head, how big does the needle look?! And I got to see my baby wriggling around 😊

Now it's just the wait xx

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Booni Mon 02-Nov-20 18:41:02

@theonewithnousername hello OP. I am sorry you are having to go through this. I am also waiting for my harmony results and then will have Amnio on the 10th November. Was your 12 weeks scan okay? Mine was fine but my midwife was concerned about my blood results. Papp-A was really low. Keeping my fingers crossed xx

Tig2010 Mon 02-Nov-20 19:05:52

@theonewithnousername ah, so glad to hear it wasn’t too bad. It makes such a difference to have lovely people there. The needle is legit huge! I could only look at it on the scan!

I’ve got everything crossed for your results xxx

theonewithnousername Tue 03-Nov-20 07:19:35

@Booni my 12 week scan had to be repeated as the baby was in an awkward position so they couldn't get any measurements. I went back two weeks later which is when they did the blood tests and this all happened.
They said at that scan, and yesterday that everything looked normal so I am praying that I get a good result. It's just this combined blood test that came back like this it completely threw me!

Good luck with your harmony and amniostesis 🤞🏼 xx

@Tig2010 thank you. I'm trying to keep distracted now but any time my phone makes a noise I'm like 😮 it's an awful wait!
And yes the needle is a whole other level!! But I didn't really feel it, it's today I'm having the pain xxx

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theonewithnousername Tue 03-Nov-20 16:16:56

This waiting in limbo is killing me 😢

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Booni Tue 03-Nov-20 16:44:12

@theonewithnousername same here 😭 I should have received my results last Friday. Every time the phone rung I nearly had a heart attack. Then I called them on Friday just to find out there wasn’t enough DNA in my sample and they will need another week 😭I have never been so scared. Everyday I wake up feeling exhausted from stressed. It’s a very lonely experience even though I have support from my close family and my boyfriend. I am keeping my fingers crossed for you. I am here if you need to talk xx

theonewithnousername Tue 03-Nov-20 20:39:07

Oh @Booni I really really feel for you. The exhaustion is unreal. I've never felt fear like this in my life. It's good that you have some support but if you need to talk I'm here 😊 I'm keeping everything crossed for you xxx

I feel incredibly blessed. The midwife called me tonight, everything was clear! Such a huge relief I cried on the phone to her and made her cry too! And I found out it's a girl 💗

Thank you everyone who has held my hand through this incredibly difficult time xxx

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CupcakesK Tue 03-Nov-20 20:58:04

So happy for you! Good luck with the rest of your pregnancy smile

Booni Tue 03-Nov-20 21:01:30

@theonewithnousername amazing news! Congratulations xx

Blackdog19 Tue 03-Nov-20 21:32:51

Congratulations so pleased for you flowers

weivfgotthis Tue 03-Nov-20 21:52:49

Congratulations that's great news x

Tig2010 Wed 04-Nov-20 16:49:14

@theonewithnousername so so pleased to hear this!! Xx

theonewithnousername Thu 05-Nov-20 10:06:23

Thank you everyone 💗 xx

@Booni any news? Xx

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