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Pregnancy

TO CVS OR NOT TO CVS??

11 replies

LetThemEatCake · 24/03/2009 16:24

hi ladies

I guess I'm just looking for advice/ opinions/ reassurance.

Am currently 13.5 w pg with dc4. Nuchal test 2 weeks ago gave risk of 1:6728 for T21 (am 36 yo) but I was still undecided about whether to have a CVS. Since the baby's heartrate was at the higher end of normal, they have asked me to come back for another scan (tomorrow) and I can decide then whether I want invasive testing.

Now I know that the risk is minimal and most people would opt not to have testing with these numbers but my history is this:

DC1 - no nuchal, severe fetal anomalies detected at 19 week scan, amnio confirmed fatal chromosomal rearrangement at pg was terminated.

DC2: low risk nuchal, no testing, healthy baby

DC3: nuchal 1:6, CVS performed, healthy baby

Something in me can't help but think that since DC3 was high risk and fine, who's to say that this baby is not low risk and not fine?

Also, am a naturally (and, I admit, foolishly) superstitious person - and today at playgroup, in the course of conversation, another mum said "oh, everyone I know with a child with Down's Syndrome had a nuchal with, like 1 in 7000" (she has a disabled child so knows a lot of mums with children with T21)

Of course I came away thinking "SIGN!! SIGN!! It's a sign!!"

I know I am being irrational, but at the same time, as the sonographer said to me on the night of the nuchal "we can't guarantee who that one person in 6728 might be." Am I better off just knowing for sure rather than being dogged by doubt for the next 24 weeks?

any advice really welcome.

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busierbee · 24/03/2009 16:47

Hello there
there is another thread here started by me about pregnancy following termination for downs. I understand totally your fears - especially given your history. Your odds are very very good though I must say. But I feel the same way - bad stuff happens when you are least expecting it. The numbers are on your side very much. I am having a cvs tomorrow but am nuch older than you - 42. I just feel i am in high risk category and even if odds are 1;1000 which they will not be I will still have one. In my mind it is something to do with responsibility - ie we chose agonisingly to terminate last pregnancy and therefore need info and knowlwdge in order to make informed choice with this one. Not everyone feels this way though - just my personal response. So good luck and follow your instinct I guess

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neolara · 24/03/2009 16:52

I do understand how being pregnant can turn one into a bag of nerves (I've had 4 mc), but honestly, and I means this in the nicest possible way, I think you would be completely and utterly bonkers to have a CVS with those odds. The chances of losing your baby as a result of the operation, although slim, are still massively higher than having a child with any problems.

It must have been completely heartbreaking for you to have lost your first child, especially at such a late stage. I imagine that you might be desparate not to be in the same situation again. But do you think the CVS would have picked up your DC's difficulties anyway? My understanding is that they only test for a fairly limited range of problems. Is there any reason to think that any other child you have will have the same problems as your first child.

Do you think there might be an element of "I can't be lucky enough to get away with it a third time"? I think that when things have gone wrong in pregnancy before, you really know that the worst can happen. This can make one focus on the worst case senario.

Obviously, however, you have to do what feels right for you. And if you feel you must know one way or the other then a CVS might be the way to go. Good luck with whatever you decide.

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Mummyfor3 · 24/03/2009 17:05

LTEC, hi, I am sure you know yourself that nobody can really "advise" you on this decision and at the end of the day you have to do what you are most comfortable/least unhappy with -
But:
here are my 2p's worth
With a (tiny) risk of 1:6728 of having a child with a trisomie or other single chromosome disorder, statistically your chance of having a healthy child is 6727:6728. Absolutely HUGE odds in your/baby's favour.
True, nobody can predcit who that one affected person is going to be, I suppose it could be you, however IMO the odds are such that the only reason to have a potentially risky invasive test done would be to prepare yourself before the birth of an unwell baby.
There are lots and lots of conditions that CVS does NOT detect - so even with good test result, no garantees.

I say all this on the background of carrying a genetic disorder, 4 miscarriages (none of them related to my problem which on paper and statistically give me a risk of 1:4 of carrying an affected child, and none of them related to invasive testing), 3 healthy children, 2x CVS, 1xAmnio, age 43.
I am considering TTC no4 and personally I would have diagnostic testing done again, but that is just me.

Sorry about the rambling. I hope somewhere in there you find something helpful.

Oh, just occured to me, you are so far on, why not wait for another couple of weeks and have an amnio instead? Less uncomfortable, less risky, but results usually take longer. If you want to test at all, that is, of course.

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angel1976 · 24/03/2009 20:09

LetThemEatCake - I totally understand what you mean... With my first DS, I got a 1:63 risk based on the nuchal and had a horrendous time as I had one CVS that failed and had to undergo a second one in less than 5 days before I hit the limit for having a CVS. I worried through my pregnancy despite an all-clear as I had several other bad 'signs' like an elevated PPPA level (could indicate growth problems in foetus) and CPC in baby's brain at my 20-week scan. I thought with all that, no way the baby would be healthy but guess what? DS is now a perfectly healthy and very cheeky 13-month-old. I was determined that with my next pregnancy, I am going to skip all the screening tests and go straight to the CVS so I know what I am dealing with.

And here I am 7 weeks pregnant and I cannot decide what to do! On one hand, after my experience with DS, I feel that my chances of a healthy pregnancy is much better than ever. On the other hand, like you, I always worry about that 1-in-2000 chances. What if I am that one??? At the moment, I have a 12-week-scan booked at my local hospital. Two days later, I have a private scan booked at the Fetal Medicine Centre that has a blood test as well and they not only measure the nuchal measurement, but look at the heart, the presence of the nasal bone to give you a risk. If a problem that cannot be ignored occurs, I can opt for a CVS that day with the renowned Professor Nicolaides. I know this all sounds slightly crazy (even to me!). My DH thinks I will just end up with more to worry about... but lets me decide what to do.

At the moment, I am wavering. I want to cancel the private scan and one small part of me feels really positive. And is a baby with Down's Syndrome really that bad? And if it is a baby with worst defects then maybe I will be able to be strong enough to go through dealing with it... I will let you know how I decide! Unless you have a CVS tomorrow, I think you won't be allowed to have one anymore? If I were you, I would opt for the amnio if I really needed to know. Good luck!

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LetThemEatCake · 26/03/2009 20:22

thanks for your responses ladies, and to those of you who have suffered losses, I am so very sorry.

I have decided to go ahead with the CVS and am booked in tomorrow morning. I will let you know how I go.

Thanks again for your support.

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angel1976 · 26/03/2009 21:36

Good luck! Let us know how you get on...

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Mummyfor3 · 26/03/2009 22:07

Good luck!

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LetThemEatCake · 27/03/2009 15:07

thanks ladies

Am home taking it easy (ie letting dh do everything for dd and ds) after an uncomplicated procedure, fetal heartbeat demonstrated afterwards etc. Am a bit uncomfortable but otherwise fine. Now just praying for a nice normal healthy 46XY or 46XX.

Good luck to all of you with your pregnancies and thanks again

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katendmom · 27/03/2009 15:40

Keep your feet up I told my DH that I would need to take it easy for a week . BEST of LUCK with the results (am in the same boat now - WAITING...)

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LetThemEatCake · 27/03/2009 16:09

thanks katendmom... am currently in bed while dh makes me a cup of tea and some oatcakes... ds is playing just in the doorway and dd is watching Horton Hears a Who (the men always resort to DVDs, it drives me mad when I think of the lengths I go to to entertain them!!)

let me know how your results go, when did you test?

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katendmom · 27/03/2009 18:59

Nothing wrong with a good Horton movie (a favorite of ours at the moment as well )! I had my CVS done on Tue but things are a bit wee nasty here... I was phoned yesterday to find out that the sample they took was small (I have another post on it that I started)... so we know for SURE it will take longer than 14 days before we can find out results. The worst case - which we won't know until next Wed/ Thur... the sample can be too small and I will have to have a repeat CVS... I am getting sick just thinking of that... Remind me - why did I get pregnant again if I already have a wonderful little boy? I am greedy, that's why!

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