1 in 55 risk of Downs and Chromosomal issues.

[TKKW]

Hi all, i know that there sadly have been a few threads recently on this topic. I really hope all those affected are doing ok.

Today I got a call from the screening midwife about our risk level, which is 1 in 55.

We are going to the hospital tomorrow, late afternoon to talk about what next.

How soon after can you have amniocentisis?

How long are you in hospital for?
How long do the results take and do you get another appointment to talk about results?

Sorry, I know i'm impatient but any heads up would be really appreciated.

Thanks.

im 14 weeks + 1 day pregnant already and am 32 years old if that helps too.

I am going through this. I don't know about your first question as mine is an amnio appointment straight off. I can just change my mind after the initial discussion if I want to (obviously! I'm not a prisoner!)

I have been told the procedure itself is quite quick. I'm guessing a bit of hanging about so an hour or two at the hospital. I'm asked to rest for at least 30 mins before leaving.

Results take 3 workign days for fast results (Downs, Edwards and Patau) and a couple of weeks for the full screening (which includes rarer complications). They will phone me for the results, but if they are positive I will get extra appointments to discuss options.

Penguins, thanks so, so much. i know what roughly to expect now and wont be stressing all day before we go later tomorrow.

I was 44 when I was pregnant, so my risk level was 1in25 just due to my age. We decided to have amnio as soon as we could. Think we had to wait til 16wks, had counselling appt with midwife beforehand to discuss procedure and possible outcomes.
Procedure was fairly quick, about 15mins, slightly uncomfortable but not painful. Had to wait about for roughly 30mins afterwards and then rest for the rest of the day.
Heard 1st results within 3 days and final results within 2wks. Everything was fine thankfully
Good luck with it all, and try not to stress yourself too much

Oh, meant to say that we now have a healthy, happy 5mth old dd

The NHS doesn't offer the new non-invasive Harmony/Panorama/Verifi blood test (>99.9% accuracy after a study on 6000 women) but you can get it done privately. The midwife may not know about it, or she might not mention it so it is worth saying something if that is a route you are able to consider. A few of us have posted quite a bit about it on other threads which I am sure you have already read!

I've had a 1 in 34 and a 1 in 5 and both children have typical chromosomes, well, the latter assumes Harmony is correct and I have faith!

Good luck with your decision and your results

Just in case you are checking in OP, I went this morning and it was fine. The worst bit was actually the needle coming out, as the muscles of the uterus clamp onto it and don't want to let it go. Not painful, but did feel a bit of tugging.

Other than that, it was less stressful physically for me than a smear.

Hi Penguins and thanks for telling me how your's was today. Glad it wasnt so traumatic. Im just back from our appointment and we decided to book our amnio test with next thurs being the day. I think im just going to deal with it. Its scary to think about the results and what happens if its the worst. Hope you have a restful evening.

Crispy, I do know about Harmony roughly. Is the difference between that and the NHS amnio that the Harmony is 0,9% more accurate and no risk of miscarriage?

Technically an amnio is more accurate, but in reality the difference is so tiny (fractions of a percent) that doctors, well, doctors who are experts on the subject at least, are happy to trust it as much as they would an amnio. Even amnios are subject to human error after all in terms of results.

Harmony carries zero risk to the baby, it is just a normal blood test like you have anyway. Amnio carries a roughly 0.5-1% risk to the baby - a lot depends on the skill of the doctor doing the amnio and I would strongly recommend finding out the past statistics of the doctor who will actually do it. There is a huge range in loss rates.

On the other hand the amnio is free on the NHS and Harmony is not. Harmony also takes two weeks, and you can get amnio results within 48 hours usually.

It all depends on your attitude to risk, and how you'd cope if something bad did happen, basically!

Good luck for next thursday

I had to have my amnio repeated as the needle didnt appear to pierce thru and consultant couldnt b sure it was in the right place despite 2 tries.
it was so traumatic as i had wanted it over n done with.

But 2 days later with an echotip needle it went in fine and was awesome to see the needle tip sparkle on the scan.
such a much better experiance- probably partly due to knowing what would happen
(in, scan n chat with consultant, sign consent form, cold alcohol disenfectant wash of tummy, another scan then in goes the needle. Syringe out fluid, remove needle then check little one is wriggling around)

I was in the hospital for under an hour- that included the 'councelling' from a midwife before meeting the consultant, the blood test after procedure and some tea and toast

hope all goes well for you first time and you get reassuring results

Curly, thanks so much. Im worries about shaking/shuddering when needle goes in.
Your experience does sound pretty awful/ frightening. Hope you're ok.

I think I need to ask consultant about shaking etc.

If it helps, I was worried about that. I closed my eyes at the point that they gave me the local anaesthetic. I then did really deep breathing and used some of the visualisation I happened to have practised for my last labour (though I am sure just concentrating on long, slow, regular breaths would work just as well). I didn't feel the moment the actual needle went in.

Also, do you know that the sharp point is removed as soon as they are in? What was described to me is that it is a two part needle, with the point coming out straight away. Therefore what is left inside during the procedure is like a straw, not anything that would scratch the baby if you moved.

But yes, do ask your consultant.

Thanks Penguins. I didnt know that. I thought the sharp needle remained inside my stomach but enclosed within a plastic sheath/ straw like thing. Sorry to be hideous...how wide is the straw, a couple of millimetres?

I asked my screening midwife about the local and at our hospital, they dont give one as they said its as painful as having the amnio itself.

Today, im feeling pretty worried about miscarriage risk at 1/100 but I have to weigh that up against my 1/55 risk a very ill baby/baby with unmeasurable condition except for diagnosis.

Im so worried about miscarriage.

I don't know if it is still physically within the bit that's outside or the bit that's inside (and I certainly didn't look). My explanation last time wasn't very good, sorry. What I meant was that the point retracts, so that there is no sharp point in your uterus during the procedure.

Not sure how wide the straw is (again, didn't look!). But I was told as the procedure was going on that it was very narrow and that was why it took a short amount of time (don't know how long, felt ages but was probably 30-60 seconds) to fill the sample bottle (same ones they use for wee for routine tests, if you know the size that is).

On the miscarriage risk, I can't find it now, but I read an interesting article somewhere which was basically saying that all miscarriages after amnio will go down as a complication of amnio. In fact, you still have something like a 1/200 risk of miscarriage generally at this stage. Added to which most areas have a risk level of more like 0.8% or 0.9% and not 1%. Added to which pregnancies resulting in amnio are often in older mothers or pregnancies with other complications, so probably the background risk is more than 0.5% for a lot of patients. Overall, the increased miscarriage risk from amino might be more like 1/200 or 1/250 rather than the 1/100 you hear so much about. This is a bit upsetting to think about, but the stillbirth risk is something like 1/200, and that's not given nearly as much publicity.

Not even 'in your uterus'. Shit wording again.

There is no sharp point sticking out inside your uterus during the procedure. So even if you move and the tube waggles, nothing will prick or scratch the baby. That's better wording.

Thank you so, so much. Your description has really helped me.

Im going to have to just settle down about this but its hard as i feel a bit in limbo about the pregnancy as i dont know whats going to happen.

Also feeling sad about something so pretty: my new maternity jeans arrived the day before the call from the midwife and I dont know what to do. Like I said, such a trivial thing to stress about.

I know what you mean about limbo.

I hate both my maternity jeans and since I'm a SAHM this time (was working last two pregnancies) I need some that I can live in. I was about to order new ones when the call came and I put it off. I've also delayed telling various people about the pregnancy. I've also been delaying getting out some of my maternity stuff, which I need to really because everything is tight. Because I knew it would feel worse to put it away again.

This time next week, hopefully you'll be where I am now. Try and keep busy between now and then. xx

Hi to anyone who is still looking at this thread.

I had the amnio today and it wasnt as bad as I thought. I didn't look at the needle going in or while it was drawing fluid out and neither could my DH.

I asked the doctor to tell me roughly when the needle was going to go in but not exactly when. It was a touch more sore than when I got injections/ blood samples from arm.

I was babbling about what to have for our dinner with my DH but I could def feel a pulling/drawing out feeling and a column or sharpness where the needle was. Wasnt too bad coming out.

On the way home I think both of us were a bit shell shocked and I felt a tiny bit crampy but nothing serious.

We are glad this third of this horrible time is over, next is waiting for results and finally then to be out of the miscarriage risk after 2 weeks or so have passed.

Still feeling very worried and preoccupied about the health of our baby and miscarriage risk but doctor said she had been doing the procedure for nearly 20 years.

Will not be going to work tomorrow (was advised that if I could, to stay and potter around the house/ rest) and our 2 years and 8 mnth old is off toe nursery until 2pm.

Really dont what to do or how to feel. Just want baby to safe and results back. Im now worried that at 15 wks and 2 days, was too early esp. as I think I should only be 14 + 2 days accord to my period and conception dates. I forgot to say that but the consultant reassured me there was plenty enough fluid to sample.

We've got a wedding to go to this weekend and a hotel stay unless my DH decides to drive home 75 miles afterwards. Myabe that will take things off my mind.

Did anyone feel "off" or a bit down after their amnio?
Has anyone felt physically unwell?

thank you,

t.

I was thinking of you today TKKW. Glad to hear that it went ok.

On the miscarriage risk, I know it sounds ridiculous, but try not to worry too much. The more I read about the risk of miscarriage with amnio, the more it seemed to be the case that the vast majority was simply the underlying risk of an early second trimester miscarriage in the type of population who often end up having an amnio (e.g. older mothers, who will come up high risk for Downs more often). The actual increased risk from amnio seems waaaaay lower than the 1% (or in my area 0.9%) risk that they make you sign off on. I was also told by the nurse at mine that a healthy foetal heartbeat immediately afterwards is a massively good sign and brings your risk down significantly.

On the timing of the procedure, I asked about this as my area don't do amnio before 16 weeks and I disagree with my dates too. The doctor said that it wasn't just about dates. That is a guideline. When they are doing the scan beforehand and during they are looking for certain physical signs that the pregnancy has progressed to the point it is safe to do amnio. The main one being certain membranes having fused (I think, I didn't ask for details). Anyway, the point was, it's not just calendar, it's all the measurements and checks that they do before going ahead. If they were unhappy, they would have called it off.

I didn't feel ill afterwards, but I did feel a bit wiped out. Also bruised and sore around my middle. Around four days afterwards a horrid green bruise about the size of a 5p (or smaller) appeared at the site of the entry wound. I was also told that a lot of cramping, etc afterwards had been linked back to dehydration and to drink plenty of fluids.

HTH a bit.

They should have measured baby's head before proceeding- mine did both days even tho the 2nd was 2 days later
So i assume if it was too early they wouldnt have gone ahead with amnio if you measured too early

Now your stressful wait begins- the knicker checking, symptom spotting, trying to stay calm and not do too much etc.
I felt numb and was like a zombie till the fast results came thru, try and keep occupied and time might pass quicker. Didnt feel unwell apart from stress sickky feelings but i did feel very low/teary

Take it easy and hope next week brings good news

I had a CVS. It left me a bit crampy and EXHAUSTED but otherwise fine. apart from the worry of waiting.
IIRC the timing actually depends on whether the membranes have fused together? I couldn't have an amnio because mine hadn't so they did a CVS instead. As long as this has happened an amnio should be fine.

Yes Curly - the head measurement was one of the checks too. I knew there were more than I remembered. It was only a week ago

Thinking of you OP. Hope you've had some good news

Me too. I was thinking about you on another thread yesterday. Hoping you have had good news. xx

That's so lovely of you Penguins and saggy.

Got the results yesterday and they are negative. Pleased and relieved that's another hurdle behind me and looking forward to being out of the "miscarriage as an amnio complication" timeframe.

I was a bit shell shocked yesterday tbh. The screening midwife was a bit quick on the phone and when i asked would i get written results or a full report, said "i dont know" which wasnt great. All she kept emphasising was "YOU HAVE A NORMAL RESULT" in quite a firm tone.

I was mulling over with my DH what I understood to be the situation with results (quick results, then full report) and Dh said the midwife only ever said there was a need for downs/edwards/patau.

Was a bit stressed last night so that's why no post.

Rang hospital again today and another really lovely midwife confirmed that I was just tested for downs/edwards/patau as this was what the nuchal trans showed a problem area in. I said what about the other chromosomals defects and she said that there were no indicators they were necessary.

I said what if there 20 weeks scan showed something and she said there would be further testing but annoyingly wasn't able to confirm how if the amnio sample could be used again (I dont se how the sample could survive that long myself) or what the testing is.

I feel happy and so is DH but also feel a bit under informed really. I clearly was not listening to the midwife on the day we booked the amnio.

I should be very happy as basically the pregnancy has been set to default where its "normal" unless 20 week scan throws anything in the mix. I also totally know that despite good scans, there could be something wrong with little person when they arrive too that wasn't detected.

I feel cautious and wish i could've been tested for as much as possible. Really cant wait til 20 week scan. I also wish I listened better but think I was a bit stunned by everything.

So yes, happy but still a bit concerned about my baby being healthy lurking about in the middle/back ground.

Really appreciate the posts from you all.

Did you get more than downs etc tested for?

Thanks,
T.