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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

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MeandMyworryingBUMP · 21/09/2020 14:15

..Also to add I am 34, healthy active, non smoker, so my age wasn't a huge factor, but I don't think this has helped my stats?

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Simz01 · 22/09/2020 10:09

@MeandMyworryingBUMP lots of luck and hope you get the reassurance that you need soon.

I am pregnant with fraternal twins and for one NT was 2.9mm and no nasal bone visible. Baby was at high risk of chromosomal abnormality. Bloods came back inconclusive.

We also opted to do the CVS and results came back very quickly as clear for Trisomy 13, 18 and 21. I got rest of the micro array just today and seem ok too. Next they will do a detailed heart scan (fetal echo) and keeping my fingers crossed.

It is scary and stressful - the first scan threw me and i hated those few weeks x

MeandMyworryingBUMP · 22/09/2020 11:01

Bless you - keeping my fingers crossed for you - but that's a positive sign isn't it? So Trisomy 13, 18 and 21 stand for the downs, patau and Edwards? so that's what I'm looking out for, for when I get my results?

It seems a lot of mums get their cvs results and if clear no follow up from what ive read? - I have already been told ill be in for another scan at 16 weeks and they may even do the amino tests aswell. I'm just wondering why - can they see something else or are they not telling me something... Its such a horrible waiting game.
especially because I have told my kids and all my family, and they all ask how I am etc... and I just feel like I don't want to talk about it at the moment. I'm scared.

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Usplusone · 22/09/2020 16:35

Hi I know how you feel. I had raised NT, low hcg, low pappa on my screening. Complete shock as I'm 33, consider myself relatively healthy and had a straightforward pregnancy 3 years ago.
In the limbo of waiting for the CVS results. Had procedure on Friday. Going mad waiting and hate myself for struggling to accept the bump and all the pregnancy symptoms.
Hang on in there, you are not alone x

MeandMyworryingBUMP · 22/09/2020 18:02

@usplusone it’s the worst isn’t it. So sorry your going through the same thing. I’ll keep my fingers crossed for you and just hope we both get good news soon xxx

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Simz01 · 22/09/2020 21:53

@MeandMyworryingBUMP thank you, and sorry, yes it is positive and I was relieved. Yes, the CVS will confirm the three trisomies which relate to the conditions you mention. Sorry, I was hoping to give some reassurance that based on similar results everything was ok.

I really hope the same for you both. The wait is the worst , but luckily CVS is pretty quickly.

Of course I am relieved and grateful. It’s just when something comes up like this it throws you and hard to enjoy. I hate the anxiety. They will do a heart scan next to check there , so a bit more waiting but keeping my fingers crossed. Really hoping for good news for both of you xx

MeandMyworryingBUMP · 22/09/2020 22:27

New symptom - anyone else’s tummy spasming slightly? It’s not painful, but where the needle went in all day today have been having little spasms...?? Hopefully all normal

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MeandMyworryingBUMP · 23/09/2020 10:05

@Simz01 Thank you so much for your post, You did reassure me. Im sorry there’s more waiting and hoping for your baby’s heart scan - I will be keeping my fingers crossed for you that everything is ok xxxx
And I hope I hear something today!

@Usplusone
Have you had any news yet? Xxx

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Ohwhocares22 · 23/09/2020 10:11

I dont have any experience of NT measurements really as my DD measurements were fine. Abnormalities were picked up by the 20 week scan and later an amnio confirmed that she did have patau syndrome. I'm not the person you need right now as, understandably, you are looking for positive stories. But, if your results arent positive when younger them, please fo get in touch. For now, know that I'm thinking of you and hoping for good news.
12 week bloods screening for Edwards and patau is reasonably recent which might be why you havent seen others with double risk results.

Usplusone · 23/09/2020 11:25

@Ohwhocares22 thank you, I find a lot of comfort in knowing there are people out there willing to share their experiences

@MeandMyworryingBUMP got the phone call this morning. The initial trisomy results are negative so now got to wait 10-12 days for the full results. Feels like one hurdle after another. Have mixed feelings, obviously a relief and a bit more hope but also hard to relax. What a roller coaster x

Usplusone · 23/09/2020 11:29

@MeandMyworryingBUMP how are you doing?

MeandMyworryingBUMP · 23/09/2020 12:03

@Usplusone Positive initially! I'm praying for you the rest of the results are good. I still haven't heard. I had my CVS on Friday too so hopefully I'll hear today. Do you mind me asking where in the country you are? I had my CVS at the Royal London, so I'm wondering if because its a busy hospital I'll have to wait longer maybe.

@Ohwhocares22 I'm so sorry this was only picked up at your 20 week scan, it must be absolutely heart breaking. Thank you for sharing, you may find someone in a similar situation on here, so of course you should share your experience.

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Simz01 · 23/09/2020 12:08

@MeandMyworryingBUMP really hope you hear today. The wait is the worst ! My CVS was on a friday a few weeks ago and they called me on Thursday, so a bit longer. I am also in London and had CVS at Queen Charlotte

@Ohwhocares22 i am so sorry you went through that, and at 20 week scan. Thank you for sharing, I think it really helps others in the same boat x

Usplusone · 23/09/2020 12:54

@MeandMyworryingBUMP I had mine in Cardiff. Was told 3-5 working days. The wait is awful. I really hope you have some good news too

MeandMyworryingBUMP · 23/09/2020 13:37

Update guys
My results are all clear on all three 21, 18 and 13! syndromes. I feel like a weight has been lifted from my chest literally.
Still not 100 % secure as I had to actually tell my nurse that I was told I would have a detailed anatomy scan. She then had to make a few calls before calling me back to confirm I would have the scan at 16 weeks, and another growth scan at 22 weeks to check baby is growing normal. (Didn't fill me with confidence that I had to tell her)
Because of my low PAPP-a hormone mostly they think will be a small baby as they aren't getting what they need from me - but will wait and see.
So yes @Usplusone I agree, I feel better but I still don't feel 100% secure.
I suppose more scans are better than no follow up at all from the CVS.

Crazy emotional week. And it looks to be an emotional and worrying pregnancy!

Thank you all for sharing your stories, and words of support. Keep us all updated and Ill update you on my scan in October. Fingers crossed for all of our babies.

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Usplusone · 23/09/2020 14:38

Fantastic news! That is so reassuring. I'm not sure how I'm going to wait for all the further tests but just going to try to relax a little bit, I hope you can do the same x

Ohwhocares22 · 23/09/2020 14:44

Brilliant news, I'm so pleased for you both. It's good to hear that you will have extra scans, it's a long time from 12 to 20 weeks in my experience. I hope that the rest of all the pregnancies goes smoothly

Amw2020 · 23/09/2020 17:30

I'm in a similar situation as my NT measurement was 6.3mm. This is so high that I feel like I don't have much hope. Bloods came back high risk for all 3 chromosomal defects so I had the CVS yesterday (which scared me to death) and have to wait another few days for results. I've not been able to go to work or get out of bed. The wait is horrendous. 😔

Usplusone · 23/09/2020 19:50

@Amw2020 I'm so sorry you are going through this too. I hope you get the initial results back soon. I find reading other's experiences on here comforting, and try to avoid Google. I'll be thinking of you over the next few days Daffodil

Amw2020 · 23/09/2020 19:57

@usplusone thank you, this forum is so comforting just knowing I'm not alone. I'll be thinking of you too and hoping you get your results soon

MeandMyworryingBUMP · 24/09/2020 07:31

Bless you, yes I found it comforting knowing I wasn’t alone. I do believe - although I did it a lot- you should wait for your own results and every pregnancy is unique. Keeping Everything crossed for you xx try and distract yourself until you hear - I went to work in the end to keep my mind off it! Xxx

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MeandMyworryingBUMP · 24/09/2020 07:32

I googled a lot I mean x

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Amw2020 · 24/09/2020 08:28

@MeandMyworryingBUMP thank you I will try to take my mind off it. I can't face work as I'm a teacher and will find it difficult facing lots of students but we will go for a walk and maybe get a drink somewhere. Xx

MeandMyworryingBUMP · 24/09/2020 10:14

Yes in that case- I understand not working! Your supposed to take it easy. I was lucky that I get to sit at my desk alone. Hope you hear some news soon. x

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Amw2020 · 24/09/2020 10:33

@MeandMyworryingBUMP thank you, I'll keep you posted! X