38 - do I need an Amnio?

[Rachae]

Hey,

I'm 9 weeks preg and I just turned 38 a few weeks ago. We have a gorgeous 11 month old son and I'm so so worried about being a little bit older, when you Google risk factors.

I'm going to pay for the NIPT (NHS do offer if combined comes back high but I don't want to wait that long)... but NIPT only checks for the 3 main ones.

My biggest concern is we're older parents and worried if we passed earlier than expected - leaving our son with a severely disabled child. It might sound really OTT this worry... I don't know... but I worry about lots now I have my little boy.

Honest opinions please... should I get it / why should I risk the amnio miscarriage risk? Am I too old that it's just a must, if we're worried about disability?

Not worried at all btw about cystic fibrosis or downs syndrome - I mean severe severe which requires round the clock care.

Thanks and appreciate any and all responses. I know disability is a HUGE moral subject and I'm so sorry if I've offended anyone with this post. I'm just thinking about my son's life.. not our preferences etc or options on disability xxx

*opinions on disability! Not options 🤦🏼‍♀️

I turn 40 this year and have just had my fourth. I have to admit the thought of paying for any extra testing before even NHS testing didn't even occur to me tbh. That's not to say I wasn't worried about my age- I was. I just didn't consider testing any earlier because of it.

We'd had discussions during this pregnancy and all previous ones about what we'd do if anything serious was found so for me earlier testing wouldn't have changed our course of action which would have been difficult at any stage of pregnancy imo.

Baby 4 is 7 weeks old and perfectly fine- all our NHS tests came back low risk so we just carried on without any further tests . X

I was a similar age to you when I was pregnant with my youngest DC, and I just had the standard NHS tests.

My results for the Trisomy tests came back as very low risk, so no need for an amnio based on those.
And IMO, 38 is not so old that the odds of a disabled baby would justify an amnio based solely on maternal age.

DC3 is 6 now, and there’s no sign of disability.

Congratulations! I don’t think 38 is especially old and I wouldn’t personally consider an amnio with low risk results. But if you do want more screening… Have you looked into Panorama? It’s a brand of NIPT but it apparently tests for more than other brands like Harmony. I’ll admit however that IDK what exactly else it tests for as it was the only screening I was offered as I was abroad, so I didn’t deep dive into it. There are clinics in London that do it, maybe elsewhere in the UK too. Only downside is that the bloods have to go to their lab in California so it’ll likely be a longer wait for results.

Thanks everyone for their comments- I really appreciate it xx
Will look into the Panorama test too! X

It's unusual to go for an amnio without having a high risk result from one of the screening tests first. The tests and scans should pick up the more common risks, and the later anomaly scan can pick up any further issues that might not be detected from those tests. Having said that, I have read about women who only found out about disabilities when their baby was born (and there are some disabilities which occur during birth and aren't caused by genetic issues, so can't be detected at all). You can't ever be sure you're not going to have a disabled child (or that your healthy child might become disabled through an accident).

I had the NIPT privately for pg when I was 38, 41 and 42. The one when I was 41 detected a high risk of one of the trisomies and that was confirmed by CVS and I had a TFMR. The results from the screening were bad enough that the CVS was almost a formality, so I wasn't too concerned about a miscarriage risk - I'd pretty much written off that pg by that point.

The advantage of having the NIPT privately is that you can get it done as early as possible (10 wks I think). The NHS will offer it if their screening shows a higher risk, but then you'd need an amnio/CVS to confirm and if the result is bad and you go for a TFMR, it takes place weeks or even months later than you could have done it if you'd just got the tests done earlier. And it's a procedure that is best done as early as possible.

I had my second at 40 I paid for the harmony test was told much more acccurate than nhs tests plus got to find out sex too at about ten weeks pregnant!

I was 37, in Spain. Basic results were fine. No amnio. DD perfect. 38 is young still.

Pregnant for first time at 40 and baby born when I was 41.

It’s a very personal thing. I was aware of being an older mum and knew the extra risks but I didn’t want any additional testing as it wouldn’t have made any difference to my pregnancy.

Do what’s right for you.

"Not worried at all btw about cystic fibrosis or downs syndrome - I mean severe severe which requires round the clock care"

There is no way severity can be tested for. Some people with Downs need round the clock care and some don't. Some conditions that require round the clock care can't be tested for.
Have a good chat with your midwife about the purpose of testing and the exact information you will be given when you get the results.

I'm pregnant at 37 and it honestly didn't occur to me to do this.

I've had all the non invasive genetic tests though but would have done so regardless of age.

I don't see 38 as being so old you have to worry TBH.

A lot of severe conditions requiring lifelong care are not genetic. Prematurity for instance can cause extreme disability. I agree you need to discuss this further with a medical professional to get a better understanding of risks and how much certainty testing can provide.

For context I opted for aminos for both my pregnancies at 38 & 39.

I had a totally unplanned pregnancy at 39 with two much older children so I went straight for a CVS. I had refused any tests with the other two because I knew I would continue with the pregnancy regardless, but this one just seemed too much of a risk - my personal view was that I had to prioritise the children I had. All was well and it was really nice having some level of reassurance from very early on in the pregnancy that there were no discernible issues. It is such a personal choice though, you need to work out what is right for you. Good luck.

Most of what you are worried about would be picked up scans, no need for amnio. I don't put a lot of stock in the miscarriage risk of amnio, but mainly, I had an ultimately unsuccessful pregnancy with a little one that was not growing as most do, and the extent to which it was obvious on scans was surprising. For instance, at around 14 weeks a specialist in the foetal medicine unit could see that little one's toes were fused.

If you are near London I can give you the name of a private doctor who specializes in foetal abnormalities.

Thanks again everyone for sharing and for your views. I'm taking it all into account xxx

I was in an area that offered NIPT as part of a trial to older mothers. It is now standard practice in the area. Anyway I had my blood test at 12 weeks pregnant with all other screening tests and it came back fine.

Personally as a child of an older mother who is also an older mother the women know and see around me with children with disabilities including Downs had them younger than 35. Some of them have younger children, so had them when they were older, who have no disabilities.

In regards of your child taking care of their younger sibling or vice versa, if your older child unfortunately ends up with a disability, part of your role as a parent is ensuring both your children aren't obliged to be the carer of the other.

No, I wouldn't risk miscarriage for a wanted child on the basis of being 38.
Do the NIPT, that will rule out two of the two big ones you're looking to avoid. Have all the ultrasounds, that will scan for most physical abnormalities. Take it from there.

My friend had a perfectly healthy baby until she had to be delivered, now she'll require support for life. It doesn't mean she shouldn't have had a third child or that her middle child will be expected to care for his his siblings forever. It just means they've got wills and thought this stuff out. Anything could happen to cause a life changing disability to any one or any child.

And you're really not that old.

I am also 38 and 14 weeks pregnant. I did the Panorama NIPt privately at 11 weeks before my combined NHS test. I wanted to get as mush assurance as possible without having to do invasive test. The Panorama tests for trisomies, sex chrome abnormalities and some micro deletions. Though you have to remember that the rate of false positive for micro deletions are quite high. But that didn't put me off, as the false negative rates are very low. So if you get negative result, you can be pretty sure that your baby is not affected by that condition. I was told the result would take 10-14 days but it came back in one week for me and all was fine. The place I did the test in London was a really nice clinic and a fetal medicine consultant did the ultrasound. He was very thorough and checked for as man conditions as it was possible to check at that point. The images and video clips they gave us were also super high quality. If you are in London, you can private message me and I can give you the name.

Good luck with your pregnancy

Thanks everyone xxx