Down's risk 1:53, going for CVS at UCLH this week. Anyone been in these shoes?

[eversomuch]

Had my 12-week scan at UCL this morning and although the scan itself looked really good, the blood work they ran for the combined test did not. They've put my risk for Down's Syndrome at 1:53, and I'm scheduled for CVS later this week.

I had DD at UCL and have always been very impressed with the doctors there. Has anyone had CVS there and could tell me about the experience? I'm as worried about the risk of miscarriage as I am about the Down's. DH will be out of town for work when I go in for the procedure, so I'll be on my own (with 13mo DD in tow).

Hoping I'll be among the 52:53 people for whom everything turns out absolutely fine.

You say that you are as worried about the risk of miscarriage as you are of the risk of Downs. You don't have to have to have further testing if you don't want to.

Of course, you and your DH may have already discussed the possible results and decided that finding out is the best way forward but sometimes people agree to these things just because they are offered.

Hope everything is well.

Thanks, spiritedwolf. We definitely want the test, but it is worrying to know that there may be a problem with the baby and/or that mc could occur. It's just all very stressful, when I was hoping today would be the day we finally got the green light to share our news. Now it's another week of waiting and worrying.

I guess I'm just wishing lots of people would tell me that they had CVS and everything was fine in the end.

I remember how stressful this can be and our doctor told us this: If you baby did have Down's, would you abort?
If no: no need for further testing.
If yes: go ahead with testing, risk of mc doesn't matter.
HTH.

Hello - yes, been there. I decided the risk of CVS and Amnio was worth taking(had cvs one pregnancy, Amnio the next due to previous probs). The risk of miscarriage is not an exact science. They say 1 in 100 will miscarry after the procedure, but then 1 in 100 miscarry at that term anyhow, so it's proving the procedure caused it. The consultant who did my amnio said she has not had a woman miscarry after a visit to her clinic. The above is what I have been told, I'm no expert, so I'm sure others have been told different. With the amnio I had a 1:50 and all was ok - he's due in 2 weeks.

I would say the CVS was uncomfortable, but I didnt' cry etc. It wasn't' too bad - was told to really focus on wiggling my toes. I closed my eyes and it was over very fast. Aftercare wise, I was told not to do anything strenuous, like lifting- so go careful with toddler. I would rather have not had my toddler there myself as I'm a wimp, but that's me and it may be a good distraction as you will be busy making sure DD is ok/behaving. Actually, if I had to do it again, I would cope with taking toddler.

It's a horrid time, but with a chance of 52:53 being ok, the odds are in your favour. I know someone who had a 1:4 chance and all was ok. There's not alot anyone can say to ease the worry, but hang on in there, take each day as it comes and keep busy. Be kind to yourself:) There's lots of help and support on here, so don't' feel alone. I can remember at the time all i wanted was happy tales and happy outcomes/endings, and there are plenty. Good luck, fingers crossed xxx

Yes I did and so did my sister. The key is to make sure you don't have the trainee - I had an Indian dr who was quite young but very experienced (sorry, can't remember name). Don't be afraid to ask who will be doing it, how many they've done and if you don't like what you hear, get over to the Fetal Medicine Centre. For my first I had dr Nicolaides do it there (he basically invented all this testing so he knew wht he was doing).

Good luck with it all. I didn't find it painful - just stressful.

also in case they don't tell you this - if you see the heartbeat immediately after the CVS, that's 95% of the miscarriage risk gone straight away. I found that helped me get through the wait for results.

I've had cvs twice at UCLH - once with a positive result for Down syndrome, and once without. The staff there are really expert and skilfull, I never had any concerns about miscarriage (and I went ahead with my second cvs when my odds were 1:1896 for trisomy 21). They are also very understanding and kind. The head of the FMU there is Mr Pandya (who hopefully doesn't get mistaken for a trainee too often!). He did my second cvs along with Dr Anna Kenyon. I think Nicolaides now has some sort of association with UCLH also. PM me if you want to talk more specifically about UCLH.

The actual procedure doesn't take long. It is uncomfortable and weird feeling, but it doesn't really hurt. There's some information about it here: www.nlm.nih.gov/medlineplus/ency/article/003406.htm

One thing to remember - you can ask to have the screen turned off or away if it distresses you.

Dear eversomuch - so sorry you are going through this. I had a 1:18 chance of downs after my blood tests. The test results were such a shock as I was only in my early 20s.

I underwent the CVS - which was a lot less painful then I thought in queen charlottes. The consultant who did the test also cited the 1:100 risk of miscarriage but explained based on the 1000s of these she had done her increased rate of miscarriage afterwards was much lower. I felt safe with her and she was so caring. Once I got he test result I really enjoyed the rest of the pregnancy.

My darling bump from these tests - is now my lovely healthy 15 year old DS!

I underwent this but at a different hospital a few months back. I had a risk of 1:120, but it was a terrifying time nonetheless.

The procedure, like others have said, was uncomfortable, but not painful. I was also told to take it easy afterwards - I too a day off work and lay on the sofa, then was fine to slowly do things, but didn't carry my toddler for a few days. If you can get someone to help you out whilst DH is away, and take care of your DD during the procedure, then I would do that,

The results took 5 days to come back - they phoned me with them - and all was fine.

I also had a counselling session beforehand, and the lovely specialist explained that the results were within normal parameters, but my age was a contributing factor (I'm 37). If I had had the same blood results 3 years ago they would not have been flagged as high-risk. Since having the amnio I have discovered that lots women I know who are over 35 have been through this.

Thanks everyone. Your comments have been really helpful.

I spoke with the FMU at UCL this morning and confirmed that the doctor I'll be seeing is very experienced and has been doing CVS for years. I know that statistically things will most likely turn out to be fine, so I'm trying not to worry too much. Still keeping the fingers crossed, though!

Just popping back in to say my final results came back today. Everything is normal and we're having a boy!

Thank you again to everyone who offered their support and shared their stories as I was headed for CVS. UCLH was amazing I can't recommend them highly enough and I'm so relieved to finally have the results.

very glad everything is fine eventually. The stress level for CVS or anmio is high, isn't it ? enjoy the rest of the pg