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Original poster

CVS Test & Low Hormone

18 replies

CharlotteEM · 28/08/2019 09:22

Morning,

I had a call from the hospital yesterday to say that baby is a high risk of Downs Syndrome and that one of the placental hormones (PAPP-A) is on the "lower side of normal". We've opted to have a CVS test done tomorrow and I'm so nervous.

This is our third pregnancy (other two were miscarriages) and it just feels like everything is against us!

If anyone can shed any light on what to expect (and I've read the online stuff but when I had my first miscarriage the information I was given about it was not at all helpful and did not prepare me in any way for what happened) so I'd appreciate any help.

Also has anyone else had the low hormone diagnosis? I've read some really horrible stories about the possible outcomes of this.

Thank you!

OP posts:
Ivfmommy2b · 29/08/2019 07:14

Hi,

I don’t have experience of this, but 2 weeks ago I had an amnio to check for chromosome issues. Still waiting for the results. This has literally been the worst 3 weeks of my life. I’m trying to take 1 day at a time & praying my results r fine. But also absolutely dreading the call. I was worried about the amnio, but have been trying to take it easy since. Good luck for today & the next few weeks. (Although you should get the first set of results in a few days which includes the DS result) xx

Original poster
CharlotteEM · 29/08/2019 09:17

Thank you so much. It's all so stressful, I wanted to enjoy this pregnancy but all I seem to have done so far is worry about it all. We should get the results early next week, it's feeling like the longest wait. I'll be thinking of you too x

OP posts:
Ivfmommy2b · 29/08/2019 10:15

I have been so anxious for my whole pregnancy, I also had to have 2 rounds of ivf to get pregnant after trying for about 10 years. So this has been so awful. Thank you xx

Original poster
CharlotteEM · 29/08/2019 10:27

Oh gosh, I can only imagine how stressful this all must be for you. It seems so unfair that we can't enjoy what's supposed to be such a special time in our lives! Xx

OP posts:
Original poster
CharlotteEM · 30/08/2019 08:40

So I didn't have the CVS yesterday. The placenta wasn't in the right place and also she didn't like that I was 14+3, which they could have told me over the phone when I got the initial call on Tuesday!! Would have saved me working myself up all of Tuesday, Wednesday and yesterday.

I'm now booked in for the amniocentesis on the 9th September. So almost another 2 weeks of waiting and worrying and then having to wait for the results! What was the procedure like?

I hate all of this so much. I feel totally detached from the baby now too. Xx

OP posts:
Ivfmommy2b · 30/08/2019 15:23

@CharlotteEM hi, the actual amnio was ok, it did hurt a little, but the mental/emotional part of it for me was worse. I took a few days off work after to rest & then tried to take it easy ever since. As they say u can still go into early labour. So I’m still apprehensive about it. But it seems many people have an amnio & all is well. It will be difficult for you to wait & the only advice I can give you is try & stay busy & try & block it out of your mind. I have found the last few days easier & have tried to relax a bit. The hospital just called me & said all my results are clear. I can’t tell you how relieved I am. It’s been the hardest journey of my life. My baby still does have a heart problem, but this shouldn’t be too much of an issue. Wishing you luck to get through these next few weeks as I know your pain. Xx

Original poster
CharlotteEM · 30/08/2019 16:05

Oh that's such good news for you I'm so pleased for you lovely! What a weight to be lifted. I'm doing my best to block it out.

I have moments of forgetting and then it hits me again and I just want to cry. All feels very much like the world is against us again, I know even the "high" risk for us is 1:100 so we have a 99% chance things are fine but I just can't shake the feeling that we are the 1% especially with the low Papp-a as well.

I just hope the next two weeks go by quickly. Xx

OP posts:
NotSoThinLizzy · 30/08/2019 16:06

Hi currently pregnant with a low pappA baby and everything is going well so far. I've got to have growth scans every 3 weeks from 28 weeks and not aloud to go over due. Theres a good facebook group to join.

MajorFaffington · 30/08/2019 16:55

The combined test uses the NT measurement, bHCG and PAPP-A levels to calculate the chance/risk of Down’s Syndrome and the other trisomies.

In Down’s Syndrome, bHCG levels are often higher than usual and PAPP-A levels often lower than usual.

So the fact your PAPP-A is low the cause of your high risk result, rather than a separate issue. Low PAPP-A can be a sign of other issues with growth/placenta (I am sure your midwife will be able to discuss that with you) but the fact it is low doesn’t make it any more likely that you are that 1 in 100, it’s why you were given those odds in the first place. If that makes sense?

I had 1 in 72 chance of Down’s Syndrome, but mine was due to very high bHCG. I had the NIPT and all was OK. I know how hard the waiting is, so I am sorry that it has been dragged out for you. Just keep thinking of that 99% chance all is OK.

Original poster
CharlotteEM · 30/08/2019 18:15

Thanks ladies, I really appreciate you taking the time to read and comment, it's all very stressful and I just hate the thought of having to wait. And then wait for the results afterwards too. 4 of my friends have also just announced their pregnancies - at the moment we are all due within 6 days of each other and it just feels like the happiness around our pregnancy has been taken from us.

I'm doing my best to focus on the 99% rather than the 1% but given our bad luck over the last 18 months, we just seem to attract sadness!! I'll let you know what happens anyway xx

OP posts:
Rentwinmama · 31/08/2019 03:49

Hey,
I too had a high risk of downs due to low Papp a, my risk was 1 in 8. Had the CVS done and my placenta was smaller than expected and so was the the baby. The CVS results took 3 weeks to come back because only a small sample could be gathered which just made the wait even longer. Luckily they came back all clear for chromosomal abnormalities.
However now due to the low Papp a I have been booked in for numerous scans and am considered a high risk pregnancy so I am consultant led now. I had a viability scan at 16 weeks which showed the baby was measuring ‘normal’ and now have my 20 week scan in 10 days, another scan booked at 23 weeks to check the blood flow through the placenta and another one at 28 weeks to check the growth of the baby.
My consultant told me that based on the findings in the 28 week scan they will let me know whether I have to do four-weekly growth scans or fortnightly/weekly growth scans. However growth scans will become part of my pregnancy from 28 weeks.
I know how stressful this time is for you, I was trying to find people in a similar situation to me so I could hear their stories. Sorry I don’t have any more info but I hope everything goes well for you x

Original poster
CharlotteEM · 31/08/2019 07:42

Thanks lovely, I'm so pleased for you that your results were normal. And I suppose it's also reassuring to have regular scans to make sure baby is doing okay.

It's just such a worrying time isn't it! I have so many friends who are due around the same time as us and they're all enjoying planning for the baby's arrival. I can't think about anything beyond the next 2 weeks xx

OP posts:
Rentwinmama · 31/08/2019 18:06

Yup I know the feeling, I found myself detaching from the pregnancy and didn’t even really feel pregnant until I had the all clear. It was such a strange time, I know these two weeks will drag for you but try to keep your mind off it x

Original poster
CharlotteEM · 12/09/2019 12:49

I'm still waiting for my results, I know I only had the amnio on Monday but I'm so anxious about it. The procedure was fairly okay apart from a couple of little twinges and I'm not as uncomfortable today as I was on Tuesday. Ugh I hate every second of this, I just want to know what's going on with our baby and I can't concentrate on anything. It's all just so difficult :(

OP posts:
MajorFaffington · 12/09/2019 13:29

Oh I really feel for you. Sorry you are having to wait so long. Did they tell you when you could expect your results?

aweedropofsancerre · 12/09/2019 13:34

CharlotteEM hope you get good news. I have had the CVs for my last three pregnancy’s due to being high risk of DS and Edwards an low pap. So I know what your going through.

Original poster
CharlotteEM · 12/09/2019 13:44

They said 2-4 working days and today is day 3 so who knows when I'll hear anything. Every time my phone makes a noise I feel sick and then disappointed as it's not the hospital calling. The waiting is just the worst part - also today is a year ago since my first miscarriage so I'm feeling pretty crappy anyway! If only I could have a nice large glass of wine! X

OP posts:
MajorFaffington · 12/09/2019 19:54

Hoping you get good news soon. Let us know x

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