Amnio - consultant advised to reconsider

[NewChoos]

I was given a risk of 1:500. I have normal markers and blood results and am 40.
We decided we wanted to have an amnio because we already have a child with (mild) health needs and I honestly have always known I do not want to have a child with DS, I am sorry if this upsets anyone but this is my personal view and is not intended to offend. We had an Amnio with DS1 as I had a low PAPP A and he does have a health concern which is being being monitored.
We were expecting an amnio yesterday but the Obs wants us to think again if we really want to do this, so has provisionally scheduled for next week. I got the feeling she thinks our risk is low and so we shouldn't go ahead although she stressed she is happy to do the procedure if we really want to.

So now we feel unsure. We do want to know but as I am now 17 weeks and will be 19 weeks ish when we get all the results, I am not sure if we could go ahead with a termination anyway. Although, I do feel we probably need to know so we have a choice.
We're in such a muddle and would appreciate some thoughts.

[Onlyconnect]

I am in a similar position to you in that i am pg and have been given lowish odds of Downs but want further testing. If you can it might be good to try to decide before an amnio whether you would continue with the pregnancy or not. I know you can never be 100% sure but for me it's not worth the risk of an amnio if I am going to continue with the pregnancy whatever the result.

[lotsofcheese]

I was in a similar position: age 40, low risk score (risk 1: 357) & with low PAPP-A & 3-year old with health issues.

I spoke things through with foetal medicine & was advised that, yes the risk of m/c was higher than the chances of something being wrong. But I needed to know definitively.

So I had the amino & all was well.

Would it be an option to speak things through with foetal medicine (even over the phone)? Or a scan for soft markers?

Good luck with whatever you decide.

[discobeaver]

It's a bloody impossible decision. I eventually opted for one with my current pg as I had one child with a chromosomal condition and I'm 43. Even though all the bloods etc came back fine v low risk, numbers and probabilities meant stuff all to me as my previous pg proved everything can look perfect but not be?
Deciding to go sheaf was sooooo hard tho, never felt so torn, many sleepless nights and just feeling so frustrated that there wadn't a clear answer.
In the end the desire to know as much as possible won out over the doubt. It was fine and the second it was over I felt absolutely that it had been the right thing to do, all the stress and anxiety.just vanished even though I still had to wait for the results and even though they say there can still be a risk up to 3 weeks later.
Good luck with your decision I know how difficult it is, I had never felt so confused in my life!

[discobeaver]

This won't help at all, but my dd's condition wouldn't have been diagnosed by an amnio anyway. I still wanted to have as much info as possible with the next pg because it was all I could do to put my mind at ease, even though I know a clear amnio isn't a guarantee.

[NewChoos]

Thanks for the replies.
I think we are leaning towards having it, we probably would terminate for DS.
For some reason I feel more nervous this time re risk of miscarriage - maybe as we feel we probably wouldn't TTC again if things don't work out.
How much did you rest post Amnio? I'm finding it hard to balance work commitments with all the hospital appointments.. Also DH had day off last week when we thought would have the amnio so may not be a be able to get time off again easily. Do you think would be complete no no for me to drive back myself?

[NewChoos]

Sorry meant to say no soft markers on scan. I just feel that no matter the odds, I need to know if we are the 1. 500 in 1 sounds good unless you are the 1??

[lotsofcheese]

Newchoos: I know exactly what you mean!

I have been "the statistic" in previous pregnancies: HELLP syndrome (1: 500), and a molar pregnancy (1: 1000). Unless you've been that statistic, you just assume it won't be you.

I also had another m/c earlier this year, so I absolutely agonised over the decision. This was definitely the worst part.

The actual procedure was fine - over in minutes & I got the initial results within 24 hours - and the final set exactly 2 weeks later.

For me, it has absolutely been the right thing to do & given me peace of mind. It has also helped me bond with the baby, especially as I chose to find out the gender.

I also think that a lot of the m/c after amnio statistics are out-of-date & the risk is much lower. Especially if you take out the background 1% loss rate. And if an experienced consultant is doing it (you have the right to ask their rates).

[lotsofcheese]

Ps I had the amnio at 3pm & was back at work the next day - desk job, in a meeting all morning. It was fine. But I did confine myself to the sofa/bed for the rest of the day/evening. I wouldn't have driven.

If I'd been in a busy/active job eg nursing, retail I would have been advised to take the next day off.

[NewChoos]

Thanks Lotsofcheese (I am currently dreaming of forbidden cheese!)
Sorry to hear you've had such a tough time and very pleased for your results now. How far along are you?

I tend to agree with you re the stats. The consultant is experienced and did the amnio with DS, I think I was just a surprised that she was reluctant this time when last time it was done without that much discussion really.

I commute into London, so I am thinking of taking Friday off although I do have a desk job, it's busy and bit stressful. I could ask a friend to drive if DH can't get the afternoon off work. Do you think driving just a bit too active? Also, my toddler is very clingy at the mo, not sure how long I can avoid picking him up!

[MyangelAva]

What a difficult decision, but it sounds like you've made it. I just wanted to wish you luck.

I had an amnio at 26 weeks, but soft markers had flagged up the real possibility of a chromosomal problem, so I didn't have such a difficult time deciding.

I just wanted to suggest that you do take the day off if you can and I wouldn't drive (especially a manual car). After mine it didn't feel right to walk very far or fast- things just felt a bit tight/ uncomfortable. It had gone the next day though. It would also be good if someone can be there with you- your partner or a close friend? It's hard when you have a toddler (my boy was nearly 2) but it was actually quite nice to rest on the sofa with my feet up for the rest of the day/ eve.

Wishing you all the best x

[shallweshop]

I was 40 when I was pg with DD and after my nuchal scan my risk came back as 1:156. However, my consultant said that, based on age alone, my risk would have been 1:91 so the fact that my nuchal scan risk had significantly lowered my risk, this was a very good sign. Also the neck fold measurement was completely normal. DD was our first (and we thought possibly our only chance at parenthood) so we decided not to go for the amnio.

Not sure my story is any help and I know it is wholly different when you already have a child you also need to consider. Good luck with your decision.

[drjohnsonscat]

I was given v good odds after my Nuchal test. Can't remember the number but the measurement was 'perfect'. I was determined to have an amino though. I was just absolutely certain. I didn't get the bloods as I was going to have the amino. Everyone thought I was mad. It turned out although my risk was whatever it was (one in several hundred) I was that one and the baby had a chromosomal abnormality so I terminated. Of course there are risks in amnio but I was more prepared to deal with those risks than with the risk of such a serious abnormality. I went on to have two healthy pgs. Just my experience - good luck whatever you decide.

[NewChoos]

Thanks again for the replies, they have really helped me rationalise things.
We are going to have the amnio, I spoke to the screening midwife today who was really nice and helpful. She said 50% of chromosome disorders are not picked up on scans/bloods.
Thanks again everyone for the support, thoughts and advice x

[drjohnsonscat]

all the best with the testing newchoos.

[MyangelAva]

I've also heard that NewChoos. My daughter had Edward's syndrome (trisomy 18) and it wasn't picked up on the bloods & NT measurement (I was given the odds of 1:190000) but at the anomaly scan stage.

Good luck with the amnio x

[discobeaver]

Good luck! Fwiw I drove myself home via Asda, did some shopping then went up to see my pony and filled his haynet.
Not sure that is the recommended thing but it seemed to make no difference if I was moving about or not?
Was a bit sore for a couple of days but after that fine.

[lotsofcheese]

Hi Newchoos - how are you getting on? Had amnio yet? If not, hope it goes well xx

[NewChoos]

Hi lotsofcheese. I had the amnio yesterday afternoon and should hopefully get the prelim results on Monday. Consultant said she was confident I did not have a major problem though - fingers crossed!
Resting today - going to to do some internet shopping and also revise. I have madly decided to do some more post grad study - great idea with a toddler!

[lotsofcheese]

Hoping you got good results today x

[NewChoos]

Thank you so much for your message. Results are good so far and have been told it's very unlikely anything will come back that's concerning. Will relax a little now!
Hope all going well with you? x

[lotsofcheese]

That's great news! Must be a big relief. You can hopefully relax even more when the 2nd set of results come through.

Nearly 28 weeks here & counting! X

[drjohnsonscat]

Lovely news!

[NewChoos]

Thanks for all the support and sharing your story drjohnsonscat.
Hope the rest of your pregnancy goes well lotsofcheese.

Hoping for an uneventful time now! x