Amniocentesis worries

[RJ3HCS]

Hi, I am currently 13+4 weeks pregnant and just received my blood test results. Midwife says baby is high risk of Down’s syndrome - 98.
Has anyone ever asked to be re tested? If so have they done?
I’m really anxious about the thought of an amniocentesis but I would rather know and prepare myself if baby does have Down’s syndrome.
Any advice would be greatly appreciated xx

I had an amnio and it really wasn’t that bad. Felt quite odd rather than painful. Doesn’t last long at all.

Waiting is the hardest but you get downs results within a few days (maybe a week I suppose with covid). We found out our baby has DiGeorge but like you I’m glad we tested so that we can prepare.

I hope it goes ok. One step at a time...

Oh sorry I just saw your first question which doesn’t apply to me. I’m sure you can be retested if that is what you want, but it might delay things? Only an amnio or other invasive test is near 100% accurate.

Also, and I have no idea if this is on your radar so apologies if it isn’t, it’s obviously better to find out ASAP if you are even remotely considering a tfmr.

Would something like a harmony test be an option?
I had a result of 1 in 110, so had the harmony offered by the hospital, but we did pay £300 for it.

Thanks for your advice @Wombleofwimbledon1984 yes I want to be able to prepare for any adjustments I need to make and get advice, etc.
Your right it might delay but I’m thinking if they can repeat it whilst waiting for the amniocentesis appointment maybe?

@WeddingNameChange I looked into the harmony test, how definite are the results? Which hospital did you get it at?
I’ve had a look around and most private places are charging over £500 and my hospital doesn’t offer this test
Thanks

I’ve heard that harmony tests have accuracy problems, and they may have false positives.

Do you think if you had a lower risk result you would stop worrying, or would you concentrate on the ‘what ifs’? I think I would and I think maybe if you are worried at a 1 in 100 result you might still worry. After all 1 in 100 is a fairly low chance.

What are the reasons you don’t want the amnio op? Is it the risk of miscarriage?

It was my local NHS hospital who arranged it for me, which is why it was slightly cheaper. Maybe less hospitals offering it at the moment though with everything else going on.

Have the hospital offered you counselling and discussed everything with you? I knew I would be keeping the baby but found it helpful to understand my options and talk it through with someone.

If I couldn't have the nipt test I would have had an amnio. For me it was important to know if my baby had down syndrome to prepare myself before the birth.

I hope your ok, I know it can be stressful

It may be also good to talk to the charity ARC op. I found them very helpful and non judgemental. They also probably know the ins and outs of all of these tests.

I didn't give myself enough time to fully research my options following a high risk result. I'd never even heard of the NIPT test tbh but I really liked the idea of having a much more accurate screening test done without risking an amnio. This came back low risk but for me the 'what ifs' as the poster said previously, haven't really gone away. I do wish now that I had had the amnio for absolute certainty but I didn't and it's been a tough pregnancy because of that. What I'm saying is that if you know that you need to know for certain then an amnio is the only way forward. I'm now 34 weeks and no issues have been flagged up on any scans (I'm having additional growth scans) but I'm still nervous about what may be found at birth. Good luck with whatever you decide to do. X

I also had an amnio which was not nearly as bad as I was expecting and came back with a clear result. Good luck OP.

Personally I'd be surprised if they retest you. Did they give you the hormone levels or is the 1/98 based on the combined test with age etc? NT measurement, nasal bone?

I think it very much depends on how you would proceed with a T21 diagnosis- keep the baby or TMFR. There is a very small risk for miscarriage with Amnio. The harmony test is very reliable for downs, however not so much for Edwards and Pataus.

We had the harmony done before the combined nhs test and the results came on the same day. Due to T21 and physical abnormalities (intestines growing on the outside, NT and nasal bone were ok) we decided to TMFR. Our local trust does not rely on harmony tests so I had to have a CVS to confirm before they would offer us a TMFR.

If you want to continue with your pregnancy either way, I would personally get the NIPT/harmony test done as it's less invasive.

I knew someone who lost a healthy baby due to an amnio. She said she felt falsely reassured about the risks of it. It is a 1 in 100 risk of inducing miscarriage. That is a huge risk when it comes to your baby's life. I would have the harmony test. It is expensive but everything about kids is expensive. The important thing is that it's safe.