To have amino or to not have amnio?

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Just had our 20 week scan. A very small chance there may be a chromosomal abnormality. Also a chance of cystic fibrosis, infection, and a couple other things. Consultant re did the scan. She looked concerned. CF tests only test me and DP for 85% of cf strands. Could pay the £300 for NIPT but our only way of knowing 100% is amnio. We would choose to terminate if baby had a disability - no judgement please. I don't know whether to have the amnio or not. Terrified. Devastated. Feel sick.

Anyone any experience?

I would do the nipty test. It's non invasive so no risk to baby. It's not 100% but extremely reliable. I believe hat it will eventually replace current testing. If it comes back 1:10,000 I would trust it. We did and dd was fine.

If it gives a high probability then you can still do the amino. Nipty can usually be arranged within a couple of days.

If you don't think you would trust the nipty then don't waste the money and go straight to amnio. Each hospital has its own risk for miscarriage based on previous procedures. Generally 1% but some are much much lower.

If you can afford it, I would do the NIPT. They are very reliable. However, amnios are pretty safe and if you are going to abort (no judgement given at all) it is important that you feel confident in your result. Good luck x

Sorry you are in this situation🙁 I’ve been there too and came on here to post a link to my thread, which has lots of really helpful posts.

Please also discuss with your concultant what how accurate the non-invasive test is FOR THE CONDITIONS YOU ARE WORRIES ABOUT. As accuracy levels vary greatly per condition.

Link to my thread as promised

www.mumsnet.com/Talk/antenatal_tests_choices/2677089-Cant-agree-with-husband-on-whether-to-have-amnio

@MadeForThis the only problem is, NIPT only tests for 3 things. So it couldn't tell you about CF or other possibilities. This is my worry. I'm really confused about what to do. I love this baby so much already.

No personal experience but this organisation were very good when we had a different problem with our 12 week scan.
www.arc-uk.org/tests-explained/amnio
Do give them a call if you feel it would help (I had never called a helpline in my life but a friend persuaded me to do it, and they really were incredibly helpful and supportive and helped us weigh up the different options).
Interesting what they say about choosing someone with good experience if you do go ahead. At the hospital we were at (a few years ago now) there was one guy who was the one to get who had a particularly low miscarriage rate.
Fingers crossed for you, whatever you decide.

I have had 2 amnios, was worried about miscarriage risks etc but was told less than 1% at the clinic - they were both very straightforward, not really painful at all and had no issues after with either. Results came back quite quickly and in our case all was well and had peace of mind for the pregnancy. Fingers crossed for you whatever you decide to do.

The question is how would you feel if you didn’t have the amino and there was a problem not picked up until birth?

If you would want an abortion if a problem was detected the only certainty is an amino. If you wouldn’t abort for the other, non-tested conditions, I’d go for the nipt

The blood tests we have had could take three weeks to come back. If I then found out they were positive and I had to have amnio, I would be 25+ weeks when i would be thinking of termination. That would ruin me. Can I choose to have the amnio beforehand? I can't deal with this I'm falling apart.

The legal cut off for abortion is 24 weeks. There are only a tiny set of circumstances when an abortion after that might be considered.

If you definitely want to abort for abnormalities (and that’s completely fine as a decision) you are going to need to have a decision before that point.

@PotteringAlong we were told opposite by the consultant today. Think I'm going to have to call ARC to get clarification around this. I'm so scared of having amnio and having a miscarriage even though nothing was wrong in the first place.

You will be able to terminate for a fetal abnormality after 24 weeks but completely understand that the sooner the better if needed.
I would have the Amnio if you know that you would terminate if there was a problem, there really is no other way to know for certain (including NIPT which is only another type of screening test, not a diagnostic test like an Amnio. People with a positive NIPT test are still offered Amnio/CVS to confirm) and I personally wouldn't want to be making a decision to terminate without knowing for 100% certain there was something wrong.

You can have an abortion after 24 weeks so definitely be guided by your consultant, they know best

My mum had 3 amnios without any negative affect. I think if there's a high risk of disability you should go ahead and have one. Lots of luck!

The consultant really wants me to wait 3 weeks for the results of bloods. I'll be 24 weeks by then. If I explain I want amnio is that a good enough reason to do it? Will they agree?

The only way to know the answer to that for certain is to speak with your Consultant but I would imagine they would if you explain that you don't want to wait.
I don't know what was seen on your scan though and what they are suspicious of so it really is best to talk with the team at the hospital.

I wish I would've asked today it was just a huge blur and I hadn't even thought about amniocentesis. I've had miscarriages already and feel like I'm just not meant for parenthood

I'm not sure what your scan showed but I had a similar experience with my DS last year where he had a bright bowel at the 20 week scan.

We had already had the NIPT done which had come back as low risk and then had the blood tests for CF, CMV, Toxo etc. I was told that whilst the CF test only defects 85% of CF mutations they are the most common so both you and your DH would both have to carry a rare mutation. These both came back negative for us.

My Toxo & CMV both came back that I'd had a previous infection which was good as it is a primary infection which can cause the most problems. I did have a recent CMV infection but was reassured that the likelihood of anything being wrong was very low due to this as it was only the bright bowel which had shown up on the scan. DS had to be tested for congenital CMV when he was born and it came back clear.

Like you on hearing the initial news at the 20w scan I immediately wanted to know for certain if something was wrong however we opted to wait for the results of the CF & infection tests first rather than risk mc when there may be nothing wrong. Like you we would have terminated had DS had disabilities. He was born a very healthy 9lbs 10oz and in perfect health at 39w. The consultant said it was likely that I'd had a bleed and he'd swallowed some blood which shows up as bright on a scan.

The wait for those test results is awful, I'd recommend talking to the antenatal screening mws as much as you need whilst you wait for them. Most of ours came back sooner than 3weeks.

I'm glad that we waited for the test results so we could avoid the amino and the risk of mc, I'd had a couple of mcs prior to falling pregnant with DS so I was really scared of doing something to risk loosing him and him being fine but I'm not saying don't go ahead with the amino as only you can make that decision. Big hugs, it's such an awful thing to go through xx

Thanks everyone. I tried phoning ARC but they aren't open past 5:30 unfortunately. I have quite a severe anxiety disorder which I've suffered from for a long time (GAD and OCD) - I'm worried about my health. Mental, physical, my babies health. I don't know what to do.

If the nipty test doesn't cover everything that you are concerned about then I would seriously consider the amnio.

The risks are extremely low. Do ask your hospital what the stats are for them. They can be massively lower than 1%

I would be very uncomfortable waiting until 25 weeks. The decision to terminate is perfectly fine to make. But would be so much harder as the pregnancy progresses.

Can the 3 week tests be done any faster if you pay privately?

My friend was told 95% chance of chromosomal abnormality incompatible with life at the 20 week scan. She had an amnio, turns out her baby was the 5% chance, unfortunately friend was the less than 1% chance and the amnio introduced an infection and she went into premature labour giving birth at 25+0. Her DC is now in high school!!

Someone does have to be the 5% and the 1% in order to make the statistic.

hope things turn out okay for you OP.

You poor soul.

I have had 1 amnio and 2 CVSs (I had two consecutive chromosomal abnormalities, followed by a healthy pregnancy). If your news is not happy news, OP (I pray that it is), then know that the ARC forum is such a lifeline.

I too was worried about the amnio. It was all very uneventful. But the three soft markers which concerned the consultant on the scan did prove to bring us sad news and at 25 weeks, I went through with all of that stuff no one ever wants to go through. Anyway, I won't burden you with that.
My advice would be to ask the consultant if he/she would be the one performing the amnio and if so, how many does he/she typically perform per year. How many do they carry out at the hospital itself per year, is another question you'll want to ask.
The higher the numbers, the more confident you will feel in their ability to carry out a straight-forward amnio. Mine was totally uneventful. I just took it really easy for a few days afterward.

I really hope your outcome will be a very happy and blessed one. It's torture what you're going through. Hugs and prayers for good news.

@Guacamoledip actually this is my life right now, it's not a wind up. It's something really awful that I'm currently trying to deal with. What exactly about this makes you think that I'm winding you up?

@TheVanguardSix thank you. I'm just worried it's all being left very late. We only have one soft marker but it's not improving or changing and is quite severe.

I'm going to call ARC today as so many people have advised that I should.

Thanks everyone for responding. Bit of a tired mess this morning.

@MadeForThis I have no idea where I would even go to get a private test. I've had a look online, loads of NIPT but nothing for CF or CMV. Will speak to ARC when they open! Thank you.