V. Distressed. 2 miscarriages, finally get to 12 weeks but now they want me to have an amnio

[Wills]

I really really need to talk to someone. I've come into work after crying most of the night cos I need to be occupied. They don't know I'm pregnant and I daren't let them find out yet.

Found out last night that baby's neck is a tiny bit thicker than normal. If I was 34 this wouldn't register as a risk but because I'm 36 it drops the score to a 1 in 155 chance of being Downs therefore I'm being advised to have the amnio. 14 years ago my mum had a cvs, 2 days later she misscarried, 3 days after that she had a letter to say the baby was fine. I've carried a fear of amnios and cvss since then. To me a uterus is rather like a balloon and balloons and needles don't go well together.

The consultant has assured me that although the national risk is 1% (i.e. greater than that of the child being downs) at their hospital they've not had a miscarriage through amnio since 1997. My brain immediately reacts with the thought "So - I'll be the first one then!"

The worst bit is that they gave me pictures of the baby. Loads of pictures, pictures of it waving, closeups of its face - everything. How can you give someone pictures of something you're then going to ask them to put at risk possibly kill? I'm soooo confused as to what to do.

Wills they are measuring the fluid at the back of the baby's neck - its not the neck itself. Sorry.

Ah ok. Thanks. I haven't looked into this enough. Too curled up with nerves

Wills this is taken from the Babycenter website:

"Normal nuchal translucency

If the NT is increased, it does not mean there is definitely a problem. Some normal babies have increased fluid, too. Image 2 shows a baby with an NT of 2.9mm, which is just outside the normal range. Though the risk will be higher than the baby's in the first image, nine out of 10 babies with a measurement between 2.5mm and 3.5mm will be completely normal."

I hope it helps. Stay calm. The FMF people will look after you.

Wills, are you booked in for a nuchal fold test or are you going straight for a CVS? I had a CVS last week with Professor Nicolaides at the fetal med centre (my second - the first was with him at Kings). If it's any help and you do decide to have a CVS, this was the process we went through:

The nuchal fold test is unlikely to be done by Nicolaides - but his team are all trained by him and seem to split their time between the clinic and Kings.

For the CVS, the professor overruns massively - some people there had been waiting longer than us. If you do have a CVS, keep phoning ahead to see how overdue it is. We were eventually seen nearly 6 hours late. We spend a lot of time mooching around Marylebone High Street trying to distract ourselves.

After the long wait, the CVS is almost an anti climax - one of his team set the scan up, and then Nicholaides whisks in, asks you to squeeze his wrist as he inserts the needle, and then dashes off to the next one - he was with us for a nanosecond both times. His expertise however also means that his record of successful CVS's (as in the process rather than the results of the test) is very high. We had to wait a couple of days for the results to be phoned to us.

I hope some of this helps you to know what to expect. It is a worrying time - my nuchal fold put my risk at 1 in 80. I needed to know one way or the other, even though I deliberately blocked out thinking about whether or not we would proceed until I knew the result.

ps the coffee at the clinic is crap...

But I'm just as scared of a cvs as an amnio. I thought (have been told by consultants) that the risk factor of a cvs is greater than an amnio. Is that not true?

I'm not sure - I didn't think there was much difference. The thing for us was that the CVS would be done several weeks earlier than an amnio, and couldn't bear the waiting. Someone probably knows the difference.

But Nicolaides is pretty much the leader in the field.

Wills, I have just been faced with a similar situation (have posted a few days ago re: amnio advice). I have actually had my amnio yesterday and mentally I am exhausted, having thought of the pros/cons constantly since receiving my screening results.

One thing I will say is I think it depends on whether you are a black and white type/need to know person. I most certainly am, the not knowing was just too much for me to contemplate. My results were 1 in 1200 which I know some women would find reassuring and I had a very low nuchal fold. However, my results with dd1 3 years ago at age 35 were 1 in 50,000, so obviously the risk this time was far greater. Also, even with the most advanced screening (I went to Barts for the Integrated test) the tests are not diagnostic and even with the best science available, are only about 90% accurate. Even though the risk of miscarriage was so much greater than the risk of downs, we opted for amnio as we just needed to know for certain and are also definite what course of action we will follow if faced with bad news.

It's a tough call, my thoughts are with you and your family.xx

sorry pacino fan - you had an amnio with a score of 1:1200 at aged 38 ?

mine was 1 in 500 at 39 and the dr said there was no way he would recommend an amnio as the result was excellent for my age.

Yes Enid, 1 in 1200 at 38. Like I said in my post though my previous result was 1 in 50,000 so to us the jump was significant. Also, the best test in the world is still not diagnostic, merely a 'risk factor' and I suppose we are just not prepared to take that risk. I also know of women with screen negative results with ds babies, and I am sure this has also led us to our decision to go ahead with amnio.

My consultant was happy to perform the amnio on the grounds of providing, hopefully, reassurance throughout the rest of my pregnancy.

wills, I had amnios with both my pregnancies. The first time I had about a 1:150 risk of DS (I was 35) and couldn't bear to be the 1 out of the 150, but everything was fine, the amnio itself was slightly painful, but performed by my wonderful consultant who was as gentle & reassuring as she could possibly be. With dd2 I had a good result for DS/spina bifida but a higher risk of Edwards syndrome (trisomy 18, like Patau's trisomy 13 is incompatible with life) so I opted for another amnio (with the same consultant) and she kept saying what lovely fingers dd2 had (Edwards babies often have crossed-over digits). The results came back fine. I have never regretted having the test done, and wish you strength on Thursday, xxxxx

Wills I went through an almost identical experience last year. After 2 m/cs (both at 12 weeks) Igot pg again and had a nuchal scan. The measurent was 2.6mm and my risk was adjusted from 1 in 156 to 1 in 44. I declined an amnio but went thorough hell making this decision. The hospital were really supportive and scanned me thoroughly at 19 and 22 weeks to see if there were any other markers for Downs such as heart problems. The scans showed everything looked fine but I still fretted thoughout the pregnancy. At 41 weeks I delivered a perfect, healthy baby girl she is 1 at then end of this month.

Go with your gut instincts.

here is a thread I was on at that time

Unfortunately overriding all of this is my unshakeable belief that if I have an invasive test it will result in miscarriage. I think this stems from watching my mum go through exactly this scenario when I was 22 years old. She lost the baby. Strangely although she morns the baby she categorically states she would do it again.

My advice same as Munz, exactly what we did in her position.

Was a horrid time, thinking of you

X

how r u going wills - sorry if my first post was a bit clinical - I think ur gut reaction's best to go with - as well as obviously having the full support of ur DH - it's really a rock and a hard place you're caught in. as I say - for us it wasn't an issue - but for you it is.

I know the amnio's are normally done at 16 weeks - but is there any chance of having your 20 week scan and then the amnio nearer to 24 weeks/ as late as poss to reduce the chances of a m/c. if that's possible it might be another option - althou personally I def wouldn't be able to terminate at that stage - so as I say rock and hard place.

Thinking of u and ur family tonight - spend time with your DH and DD's and chat it thru.

I had a very similar experience to Enid except my result was 'worse' but I just couldnt' do it. Thought before I got pg that I would definitely have all the tests going (I was 40) but I couldn't do it once I'd seen her. The 20 week scan was amazing - professors aplenty looking at her heart and her fingers - and my risk went down to - I think - one in 800. She was perfect and lovely.
BUT....I don't have a moral view on this.

Did you see a nose bone? I did tons of research after my nuchal and found out that around 70% of babies with Downs do not have a nose bone at this stage.

I can only share my experience - I have a 3yo with Down syndrome and a 1 yo - both dds.

We learned at 22 weeks that our dd1 would be born with a heart defect. That heart defect we were told at the time is a hard marker for Down syndrome - over 80% of children born with this heart defect had down sydnrome. I was determined not to have an amnio - for a number of reasons. However dh and I had talked about the baby and the original provisional diagnosis the local hopsital gave us of a different heart defect that needed a lot more intervention. We had decided that this was our babe and we would have the baby regardless. The cardiologist at the Fetal Medical Centre was very supportive of our wish not to have an amnio - in fact he said that if nothing would change after we had the amnio then it was better not to have it.

When I was pregnant with dd2 they found a soft marker for Down syndrome and again we refused an amnio - the soft marker increased my chances of having another child with Down syndrome. Again we chose not to have an amnio. Our dd2 was born last November without Down syndrome.

Whilst there is time that dd1 needs extra attention and in the early days needed a lot of care until her heart surgery - NOW - she does the things that 3yo do - she attends kindy, swimming lessons, plays with friends etc. TO be honest she really does not need any extra care than any other child. Yes we do have medical appts and therapy appts but they take up no more time than perhaps her doing music classes or something like that.

In fact in terms of babyhood dd2 was far more demanding that dd1 ever was.

The story you talked about - No matter what - is one of dd1's favourite stories.

I know there are plenty of people out there who would not have done what we did and would choose to do things differently but I can't imagine life without my dd1.

Many thanks to you all, you have all been wonderful. eidsvoid - thanks, its wonderful it hear that. Yesterday was agony. We were due to have the blood results phoned through at 6.30 but had been warned there was only a 1% chance that they would change anything so really not to count on them. At 8.00 when the phone still hadn't rung dh and I had a real heart to heart. I explained that my brain said the with two healthy children that terminating an unhealthy one was the right thing to do. The problem was that my heart just couldn't do it. That I couldn't live with myself, that this was our child and it needed us. We both decided to wait until we got a second opinion. I went to bed. At 9.45pm dh woke me to tell me that the blood results had come in and had moved it from 1:155 to 1:1104 and that the consultant was stunned but was now not recommending an amnio. I promptly burst into tears... again. I'm now slowly starting to try and believe in this. To believe there will be a joyous and gorgeous outcome. Phew what a stunning roller coaster parenthood is.

Again. many thanks to you all, you helped me get through one of the hardest days I've ever known.

Thankyou.

how lovely

eidsvolds post made me well up

and yours may have tipped me over the edge especially about the baby needing you.

damn hormones!

xx E

Wills - personal choice decision for you - doesn't make it any easier though does it?

I'm 38 and expecting dd2( I was 37 when I had dd1) for me (and dp) I wanted to know one way or the other so didn't even have a nuchal scan just went straight to CVS. CVS does have a potentially higher miscarriage rate than amnio but obviously can be done quicker - I have had a CVS done with both pregnancies.

I got my initial results phoned through the next day - and admit I was crapping it - the fear of knowing the results and the fear of miscarrying - luckily everything has been O.K on all fronts.

A CVS is not a particularly pleasant experience but you do get a local anaesthatic - just feel a bit of tugging IYKWIM. After the CVS, I did a bit of sobbing both times and was scared I might have caused a miscarriage - I found it a very emotional experience.

IMO, the thing to ask is what would you do if the result was positive for Downs - if the answer is I would carry on anyway then I wouldn't bother having a CVS and run the risk of miscarrying - if you would terminate then have the test.

Love and hugs anyway - I know what a difficult decision this is.

that's great, wills

Just read your most recent post - so congrats.