Didn’t have the tests and regretting it.

[Duein2020]

I had my 12 week scan last week and although I’d previously agreed to have the combined screening I panicked at the last minute and just had a dating scan. I’ve been so anxious about everything I was just concerned the worry of being high risk would send me over the edge. I’m 35+ and now feel like I’ve made a mistake.
Can anyone advise?

I'm not sure I can offer any useful advice in terms of the tests, apart from I know there's quite a small window when you can have the combined test done and it's unlikely the NHS will offer a retest in circumstances such as this.

One thing it's worth considering though OP is that you made the decision not to have the testing because of anxiety. You're now doubting the decision not to have the testing because of anxiety. It may be worth speaking to your midwife to get some support from the anxiety you're feeling in this pregnancy, so that it doesn't cloud your judgment or affect any of the other decisions you make which you later come to regret in a similar way.

Good luck with everything

Agree with pp re:anxiety. It sounds like you could do with some support. I declined screening for Downs Syndrome and just opted for Edward's and Patsy's screening but was completely happy in my decision.

You could ring your midwife and discuss having a Quad test, which is based just on blood results (less accurate which is why combined screening is offered in the first instance). Or you could go private and get a NIPT test.

You could contact your midwife and say you are interested in having combined screening now, although it will be less accurate if done outside the window. Be aware that combined screening gives you the chance of having a baby affected by Down's Syndrome and some other conditions, not a definite yes/ no, so there will still be uncertainty after the result.

Another option is a private NIPT test (such as Harmony) which costs around £400 and has an error rate of around 1:10,000, so very accurate.

There is a charity Antenatal Results and Choices which might have more information.

The screening options don't identify every condition, so you will need to find a way to deal with uncertainty through the pregnancy even if you have the test and get reassuring results. I found talking through scenarios with my husband helpful - what would we do if our child had a condition - I realised we could cope with many of the things I was worrying about.

Thank you for your replies.

I have been suffering terribly with hyperemesis and I think not leaving the house for 7 weeks has given me too much time to think/ worry.

I had 2 early scans due to heavy bleeding and felt reassured afterwards but my 12 week one felt rushed and I came away more worried than before. I will contact my midwife.

Thanks again.

I’m sure everything is fine, I’m wondering if having a 36 week scan might help? Are you in a city you can book in for a private scan next week. I had multiple scans with my pregnancies (big babies) and it really helped ease my worries.

I’m only 13 weeks so will have another scan at 20 weeks. I’m just panicking about making the wrong choice.

What is the window for private NIPT testing?
Thanks again.

I think that getting help for your anxiety like others have suggested is the first step?

Also agree that talking through what would happen if you did get a result say high risk for Down’s Syndrome with your DH.

Some people I know have refused tests because they knew they would bring up the baby whatever the result. Others have the tests and sometimes decide to terminate. What is important is that you have both discussed the possible outcomes before testing.

I did discuss this with DP and we agreed that if the baby had DS we would continue with the pregnancy. It’s the other possibilities that I’m now worrying about.

Sorry OP I read it as you are 35 weeks pregnant.

If you feel you now want the tests just ask your midwife or go for the private harmony test which has less error, it will definitely ease your anxiety although some anxiety is perfectly normal. I worried about so many things and even more when baby arrived and still do!

I’m probably a broken record on this thread but wanted to clarify regarding NIPT such as Harmony. It is not diagnostic or accurate. It is more accurate for Downs (80% positive detection), however it can commonly flag up high risk for conditions such as Edwards and Pataus “incompatible with life”. In those conditions (and many others) it has barely a 30-40% positive prediction for conditions.

I would, for the above reasons, not necessarily recommended NIPT for someone with an already elevated level of anxiety unless there are high risk factors already identified - unless fully informed and feeling emotionally able to face a gruelling diagnostic process over many months - being faced potentially with the uncertainty your baby could be assessed as high risk for severe disability or even death, potentially unnecessarily.

Anomaly scans occur at 20 weeks as this is when many issues can become apparent - and rarely before, regardless of what screening tests might tell us.

Obviously it is a very personal decision, but I wanted to make sure if you make a decision you are informed. Sending you lots of love and best wished for your pregnancy xxx

www.asa.org.uk/news/non-invasive-prenatal-testing-nipt-a-look-at-the-asa-s-rulings.html

www.itv.com/news/2019-11-20/ads-for-three-prenatal-genetic-test-firms-banned-for-using-misleading-statistics/

As you are only 13 weeks you can still have the combined test done. Ring the scan department on Monday because you may need to be rescanned (depends if the nuchal translucency was measured & recorded) and they can arrange it. You can do the combined test up to 14 weeks so action this on Monday.

@Sussexmidwife Are the likely to scan me again because I’ve changed my mind?

Thanks for your replies. Would you suggest speaking to my midwife about my anxiety? I’m not due to see her for a few weeks.

You should have been offered an opportunity to fully discuss your decision about screening. You absolutely have the right to change your mind. Did they measure the NT? If it was measured & recorded you don’t need another scan anyway, if it wasn’t they will have to fit you in. Contact me by PM if you need to.
Yes, definitely contact your midwife about your anxiety. It could be very appropriate for you to see a specialist midwife who can help you with this.

I don’t think she measured the NT but I was literally in and out of there in 5 minutes so I’m not entirely sure.

I will call my midwife on Monday, thank you.