Did you have CVS/ Amnio even though your risk was low? (1:1000 +)

[Appleseed365]

Hello.

I know that ultimately it has to be our decision but I am looking for opinions from others here... I am tying myself in knots at the moment :(

OSCAR test 1:1987, (Trisomy 13/18 1:3866) 14 weeks and 3 days now. Age 39. This will be our first baby following endo laparoscopy.

My partner has a worsening arthritic condition that means if we discovered there was a problem we would terminate.

So my question is: despite a good result did you just decide to have a CVS/ Amnio to be sure? (despite the risk of miscarriage) Did you just have to know?

I have spoken with the FMC in London who seem to be very helpful on CVS info, and with ARC... both have been wonderful...

However the thought of miscarriage for a perfect baby at my age is heartbreaking, but the thought of having a special needs child would be to hard to handle in our situation. Should I test?

Sorry if this sounds pathetic! I am confused and scared to make the wrong decision. Any advice out there?

x

[Snackalot]

No, we didn't... but we were in different circumstances. And much to my surprise, once pregnant the first time I was determined to have the baby whatever; whereas DH wanted every test going :)

If your decision about what to do depends on the test results, I guess you'd better have the test. If it wouldn't make any difference, why test?

Good luck, may you have a happy healthy baby.

[runaroundstartsnow]

I did, i had a 1 in 2360 risk and was still deciding when the Prof just did it! I was not expecting it and the sonographer looked horrified as i had not even signed the consent form...but it was fine and i am one of those people who HAS to know, i like to be prepared.
Good luck with your decision, only you can decide if its worth it but the FMC is a good place to start.

[EggletinaClock]

Runaround. Do you mean you had a CVS without giving your consent? An invasive procedure that you have to keep incredibly still during? I find that difficult to believe, it's also a serious assault as any doctor knows.

Appleseed, your odds look good to me. I have previously lost a baby to Edward's Syndrome (T18) so my odds are now 1:100 regardless of my age. If I manage to get pregnant again I will be having a CVS at 11 weeks as I think taking the risk of miscarrying then is better than not knowing for certain and then risking another late termination. I don't think I could be persuaded otherwise, except perhaps by Nicolaides at the FMC. The sticking point for me is that I was told last time that up to 50% of babies with chromosomal disorders were not picked up by scans alone as they had no soft markers.

I think if I were you though I would chance it and leave things be.

Hope you can make a decision your happy with.
x

[ghislaine]

Hi appleseed

A few weeks ago I had cvs even though my odds for down syndrome were 1:1896 and my odds for Edward's and Patau's were in the 1: 20 000 range. I had a down syndrome pregnancy that I terminated last year and I could not be reassured by probabilities, only the truth. Because of my history, I didn't encounter any resistance from the consultant doing my scan to proceeding to cvs.

Miscarriage risks from amnio/cvs are very low, and in the hands of a skilled and experienced practitioner even less, especially if you go somewhere like the FMC. It's completely up to you - only you know whether it's worth it. No-one else is living your life and no-one else can make those decisions for you. Good luck whatever you decide.

[runaroundstartsnow]

Yes, i had the procedure before signing. He came in, asked if i was neurotic and i said yes. Then he sat next to me asking what else i worried about and told me to hold his arm.He then wiped my belly so i let go of his arm and asked what he was doing. He said hold my arm so i did and he just did it.
I was very shocked as although i had picked the wednesday apt thinking that i may well have the CVS i was not expecting it done so fast.
I can only assume he believed i had made my mind up.
The sonographer looked very worried until i signed the consent. I did say to my DH that i could have got them into a lot of trouble as i had not actually agreed to CVS..i had thought Nicholaides would discuss my results with me and that is what i thought he sat next to me to do!

[EggletinaClock]

I am quite shocked by that. I would think that a procedure carrying the risks that a CVS does would have to be performed under very specific conditions.

[runaroundstartsnow]

I was shocked too, but i was pretty much prepared to have the CVS anyway, it was over in about 3 seconds and sonographer had already explained that if i was to have it i was aperfect candidate as my placenta was high and i had a big gap between it and baby. I am glad i had it as i am the sort of person who would have worried that they had missed something on the scan and it did all go very well...however if it had gone wrong i am not sure what i would have done.

[runaroundstartsnow]

Oh and i thought the CVS would be some big drawn out thing with lots of staff and special conditions..it was so fast,its over before you know its happening and is really such a simple thing.
I don't know how it compares with an amnio though, that may be a more involved procedure.

[glimmer]

Appleseed365 - I understand that you are trying to find the right decision in your situation and I do not want to make things worse for you. But there are
plenty of disorders that cannot be picked up either by amnio or CVS. Even if you decide you will have invasive testing, you can never be sure everything will be fine. Sorry if that makes things even worse.

[hellymelly]

I agree with glimmer.All pregnancies carry a risk of a baby with a disability,and you do have to somehow get your head round that.Babies can be damaged by the birth,or they can have problems that can't be tested for-My Godson has severe autism for instance.Also Downs is not so terrible imo,in fact a child with Downs would have been far easier to deal with in a family in many ways than my Godson who has had many really difficult times.(he is a lovely and much loved child too,I should add). If its helpful I had rather better odds than that for DD1,when I was 40 (1-5,000) and far worse ones with dd2 when I was 42 (1-160) neither child has a disability.

[Appleseed365]

Thank you for all your advice.

I agree with hellymelly and glimmer that nothing is 100%, and I just need to get my head round this aspect of pregnancy... and also totally appreciate that Autism in many ways would be harder to deal with than other problems (having spoken to mums of both).

I have decided to book a CVS at the FMC this week, as for me I think the more information I am able to know, albeit not in anyway conclusive for all aspects of 'health', the better.

With the years we have had with my partner being so very ill, the more 'truths' we can collect regarding our baby the better.

Fingers crossed.

Thanks again.

x

[hellymelly]

When I was in your position,I had a chat with my (older,v experienced) consultant. I wanted to know if it would be better to be prepared for the baby having Downs, rather than finding out at birth.When I told him I would not want to terminate a Downs baby,he strongly advised against an amnio. He felt the risk of a miscarriage was too big a risk to take if the baby would be wanted either way.So I didn't have any further tests,even when I had the 1-160 odds with DD2. If you would absolutely terminate,then proceeding with testing seems reasonable,but if not then I would go away and think strongly about whether the risk is worth it. You are 39,not 29,and losing a baby now could mean losing the chance to ever be a mother.I don't want to be brutal,but I've had my babies late too,and I know others who have not been so lucky.
Good luck and best wishes whatever you decide.

[hellymelly]

Oh,and I would think the usual odds just going by your age alone,are far higher than yours,suggesting that it is extremely unlikely your baby has Downs.

[Catslikehats]

My circumstances were very different but I had a CVS prior to knowing what my odds were.

When I was 32 I was given odds of 1/3000 (or something similarly high) and my DS2 had Downs. When I became pregnant with DC4 2 yrs later I wanted to have the CVS as early as possible and at the CVS apt the professor gave me a "suggested" odd of 1/2 due to an exceptionally high NT. DD2 was fine.

I am sorry if this doesn't help. My feeling is if it is really important to you
then have it done, but it has to be your decision.

Also bear in mind that when carried out by a skilled practitioner MC rates are generally considered to be much lower than the currently quoted 1/100.

Good luck with whatever you do.