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Original poster

Awaiting results of my CVS [sad] 1:12 Downs 1:9 Edwards/Patau WORRIED SICK

49 replies

MeandMyworryingBUMP · 21/09/2020 14:13

So last week after I had told the world I was pregnant, after a straight forward scan, no abnormalities noted during scan of NT size (3mm) then. I had a phone call that my Maternal screening report was abnormal. that I had a 1:12 chance of baby having Downs and a 1:9 chance that they could have Edwards/Patau syndrome.
I opted for having another scan and a CVS straight away - I needed to know for sure if my baby was very poorly Sad
The ultrasound was very thorough and no notable issues (NT was down actually to 2.8) but I opted for the CVS anyway, which was yes uncomfortable, weird and frightening, I felt sore after for 2 days, and I have quite an impressive bruise. but my experience with the hospital and aftercare was amazing, even though I waited all day!

I spent hours looking online and found various threads on here that actually comforted me, and supported me, as I was devastated because I've been trying for over a year, and have had a miscarriage previously, I just wanted to 1) share my journey in case it helped others, and 2) I wondered if anyone had been given a double risk before....I haven't seen that anywhere, it seems its a risk of downs OR patau, not both together? Your stories and outcomes will be appreciated, as I am literally playing the waiting game until I get my results. (3-7 working days they told me) I was alos informed, even if my CVS is clear, they will be testing baby for more things due to my PAPP-a and hCG

My hCG is 0.42MoM and my PAPP-A is 0.26 MoM
I also had my daughter (Now 4) 6 weeks early but healthy!

super worried and anxious but hopeful
xxx

OP posts:
Usplusone · 27/09/2020 19:20

Hi how's everyone doing? I'm struggling with the wait for the next results now!

Amw2020 · 27/09/2020 20:22

@usplusone Hi! I got my first set of CVS results back and they were clear! I'm relieved but now wondering what could be wrong. I have to wait another week for next set of results and a scan on 7th Oct. When do you get your results? X

Usplusone · 28/09/2020 07:27

I feel the same. Relieved but also anxious about what it could be. I'm expecting full CVS results Friday, but it may possibly be longer.

I don't think we will have another scan until 20 weeks which feels too long for me, so if they don't do one sooner I may pay for a private one. They are waiting for the CVS results before booking anything further. It's an agonising wait. Trying to distract myself with work, I can luckily work from home for a bit, at least this week, but I can't for much longer. Trying to read all the positive stories I can find

Usplusone · 28/09/2020 07:28

Oh, and congratulations on the initial results!

Amw2020 · 28/09/2020 17:30

@usplusone the wait is just horrible. I'm also getting the next results earliest Friday. They have booked me in for a 16 week scan which I'm happy about. Maybe you can ask for an earlier one due to anxieties? I'm also keeping busy, I went back to work today but teaching was difficult as I feel very 'vacant'.

Original poster
MeandMyworryingBUMP · 30/09/2020 09:19

@Usplusone the hospital told me I won’t have further tests from the cvs- but I said the dr who did it said he would want a scan at 16weeks - they only booked it in because of that! - had I not said anything I would have to wait for 20 weeks scan. I would maybe request it - and say the same as I did maybe? I’m still a little nervous. I’ve been having lots of pains- but I can’t remember from my first pregnancy if this is all normal stretching pains! Trying to remain positive and just hope xx

OP posts:
Original poster
MeandMyworryingBUMP · 30/09/2020 09:21

@Amw2020 that’s reassuring news! Hope you feel a little more relieved now and try and stay positive for the rest - keep us posted xx

OP posts:
Usplusone · 30/09/2020 13:56

If CVS results all okay I think I will ask about a 16 week scan, 20 weeks feels far too long to wait especially if there's a possibility of something wrong. I suspect because of covid they are limiting visits.

I'm working from home at the moment but all being ok I'll go back in next week, just preparing myself for the conversations I'll end up having with my colleagues. They are all lovely, and I can't hide the bump, it's just going to be a weird thing to talk about.

Amw2020 · 01/10/2020 17:13

I just had my second set of results back from CVS and they're all clear! I'm so happy. Just need the scan next Weds to be ok now! I was given a 15% chance of baby being healthy at my 12 week scan and am now hoping that chance has increased since clear CVS results.

Simz01 · 01/10/2020 17:36

I am pleased all clear ladies ! After our cvs I’m not waiting on the 20’week scan and also the fetal echo / heart scan. The wait still makes me nervous, especially for the 20 week milestone and I hope the don’t find anything there.

I’ve booked at additional one next week too - really hoping the nasal bone is visible then as it’s still making me uneasy x

Amw2020 · 01/10/2020 18:22

@Simz01 It is so nerve-wracking isn't it! I'm just hoping for a miracle. From being told I have a 15 % chance of a healthy baby to clear CVS results, I'm hoping that makes the chances go up? I guess it does

Simz01 · 01/10/2020 18:41

@Amw2020 it really is. I am of course relieved from the clear CVS, but it is still in the back of my mind. Google doesn’t help when I read about absent nasal bones. But just hoping.

I hope you are doing ok and more relaxed after the CVS. I think it definitely does make the chances go up a lot! I’m hoping now I am a small % without nasal bone and all well or it will turn up in next scan xx

Usplusone · 01/10/2020 18:58

Good news on the clear CVS! That's one huge hurdle over. I'll be thinking of you on weds.

I'm still waiting on mine. I'll definitely be getting an earlier scan than 20 weeks if that's all the NHS will give us. Can't handle the wait. Haven't made my 16 week midwife appointment yet just in case it's not good news and then I'd have to cancel it.

Usplusone · 01/10/2020 19:00

Oh just re-read and noticed you both have scans next week! Good luck X

Amw2020 · 01/10/2020 19:16

@Simz01 I think I read about absent nasal bones and they can 'appear' in later scans due to the first scan often being unclear. Google is sometimes our worst enemy isn't it! I've literally googled everything!!
I'm feeling a lot more relaxed now thank you, I hope you manage to relax a bit too.

Amw2020 · 01/10/2020 19:17

@usplusone thank you so much and I hope you manage to yet an earlier scan! They shouldn't make you wait so long. Keep us posted.

Simz01 · 01/10/2020 19:50

@Amw2020 thank you, I do feel better compared to a few weeks ago. And agree, google sends us down a rabbit hole. Glad you feel a bit more relaxed too

@Usplusone thank you ! I hope you get a scan soon too. I have booked one privately actually before the 20 week ones. Just keen to see how it is all looking too as it’s been a while since a scan with all the tests etc as you of course understand

Hopefully we can all keep each other posted x

Usplusone · 09/10/2020 15:21

How is everyone coping? Hope all is going well.
Finally got our full CVS results back and they were normal. Also found out it's a boy 💙
Have to wait until 20 weeks for a scan, I did question this but they said it wouldn't change anything. I feel like it might help my sanity though...

Amw2020 · 09/10/2020 16:45

@usplusone Hi! I'm so pleased your CVS results were clear. Also congrats on baby being a boy 😀💙 I'm also havnig a boy! I'm not sure if I said earlier but our CVS results were also clear. We went for our 16 week scan on Weds and they did find something wrong with baby's heart though. It's something called Tetralogy Of Fallot. We had a long chat with the heart specialist and the good news is that it's treatable. Baby will need open heart surgery around 3 months old and maybe further surgery as he gets older but should lead a relatively normal life. We are pretty relieved as expected the worst! How are you feeling?

Simz01 · 09/10/2020 23:12

So pleased to hear CVS results were clear for you ladies. And congrats on expecting boys! How exciting! We still chose not to find out the gender, but I think husband is giving in and wants to know !

@Amw2020 glad everything is ok and the heart condition is treatable and there are amazing doctors / cardiologists and it sounds like you are in good hands with good advice.

We also have a heart scan booked in which we were referred for due to the first trimester scan findings. It was meant to be originally at around 17 weeks but the cardiologist said that they will get a better view a bit later, so two ‘big’ scans coming up in a couple weeks xx

Amw2020 · 10/10/2020 00:57

@Simz01Thank you for the reassuring message. We feel so much better now and do feel like we are in good hands. Good luck with your scans, I've got my fingers crossed for you x

Simz01 · 10/10/2020 09:48

@Amw2020 thank you so much x

Usplusone · 10/10/2020 13:43

This all sounds positive, I'm pleased for you to have some answers.
They are staying firm on no scan until 20 weeks, going to speak with consultant about it next week hopefully. I get the rationale from a medical perspective (I'm a medic) but it still feels like such a long time especially when I hear people do have it sooner in other places

Amw2020 · 10/10/2020 14:25

@usplusone it is a long time to wait but hopefully it's a good sign that they don't want you in sooner. I guess they can see a lot more at the 20 week scan. They told me that it is unusual to find heart defects at 16 weeks so I was pretty lucky that they found it so early. I hope the consultant can make you feel better

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