Down's Syndrome Test - any advice?

[oldermama2021]

Hi,
I am currently 14 weeks pregnant and had an appointment at the hospital this week. Everything went well but as I am 39 they gave me information leaflets home to read about whether or not I would like the blood test to check for Down's syndrome, Edwards and Patau. I don't know what to do. I know it just gives a result of low risk or high risk and with my age I know I am already high risk (I presume). Can any one offer any advice? I am assuming that these conditions may not be picked up at the 20 week scan? I will probably worry about these things anyway and they have explained that a high risk result does not necessarily mean the baby will have these conditions, equally a low-risk result the same. This is my first baby and just not sure what to do. So any help would be gratefully received. Thank you.

I think it depends what you would do with the results? If you would terminate then clearly knowing sooner rather than later is preferable. If you wouldn’t then it matters less.

If you want a much clearer picture you need a harmony test. If you want to know one way or the other you need a CVS test

I think everyone is offered the test - I don’t think it’s because of your age

I'm 31 and I had the blood test which came back as me being higher risk at 1/150 so just on the cusp. I was offered further tests to find out for definite but that came with a 1-3% chance of miscarriage, whereas actually having a baby with DS is 0.7% so I figured it's not worth the risk and I will love them no matter what.

I'll be honest getting that call and hearing the words 'higher risk' I completely lost it and was an emotional mess. So for me personally I would not get the test again when I decide to have anymore just for my own mental health.

I'm not in any higher risk category, but I was offered, and took, the test. You can decide for yourself what you would do with the result, when you get it.

For me, I would prefer to process and mentally prepare for a potential diagnosis, before meeting my baby.
I wouldn't terminate, but I'd still want to know in advance. There would be no advantage for me in not knowing until they arrived.

It's entirely up to you how you feel.

Everyone gets given the leaflet and the option of testing

It really depends on what you would do if an issue was found. Personally we wouldn't continue a pregnancy with downs/Edwards/Pateus therefore have opted to test.

Even if you are comfortable with a downs diagnosis Edwards and Pateus are not compatible with life and most babies pass away soon after birth and lots of women wouldn't want to carry a baby for 9 months knowing this

But it's entirely up to you. Quite often they can see things on the 12 and 20 week scans which indicate any of those 3 syndromes without the blood test so you might get pre warned If something was seen anyway

Thank you everyone. I will read the leaflets thoroughly over the weekend and have a chat with hubby about it and what we would do with the results etc. The midwife said that sometimes Edwards and Pateau can be picked up at 20 week scan but that Down's isn't always.
Thanks everyone for your thoughts.

Congratulations on your pregnancy :-) I'm 36 and 17 weeks pregnant with DC2. By the time I had my "12 week" scan I was actually 15+4 which was apparently too late to do the normal tests so I think you will have to decide quickly. For my first it was just measurements so no harm to baby, though there are different "levels" some of which are more intrusive. In the end the only thing they could do this time was a blood test to deforming downs risk and said they would hopefully have an idea from 20 week scan whether there were any growth defects.

I don't think it's a bad thing to be prepared, so I would have had any check that didn't risk the baby.

Your age will not mean you are automatically high risk - I just had my DS results back as low and I'm not much younger than you!

All the best for the pregnancy x

Did you not have screening done for downs etc? Because when I had my DD 39 at the time, I got given my results at my scan - they took blood tests at the same time.

At the 20 week scan my DD also had a separate cardiac scan - not done routinely - so I would be very surprised if they couldn't pick up markers by then.

We had a blood test but had it been high I wouldn't have had an amniocentesis due to the miscarriage risk, as we wouldn't have aborted for Downs.

For me, I chose to (I was 29 at the time and it was offered as a standard) as I know that some of the conditions are classed as ‘not compatible with life’. If the chances were high for a Down’s syndrome, I would have been more than happy to continue with the pregnancy, however I think with the other 2 conditions I would have had to do a lot more research before making a decision

It depends on what you'd do. I probably would have terminated, particularly for Edwards & Patau syndromes and if I was going to do that if rather have to do that early on than later.

Age is just one factor - I've been low risk in both pregnancies in my mid & late 30s.

Soft uK is an organisisation supporting families efected by t13 and T18. It is informative and sees the reality.

My Aunt was 43 with her first pregnancy. From day one all she got was leaflets and told she was high risk and alot of negativity.
Her daughter is now starting school, beautiful, healthy and clever :)

I’m 38, I had the blood test and it same back as high risk - 1:50. I was expecting that as my result 7 years ago was also high risk at 1:100.
I declined any further investigations.
I did start getting a bit anxious as my due date approached and was a bit worked up waiting for baby to have her paediatric review when born.

Thank you everyone for your responses. I will definitely give it a lot of thinking over the weekend. I wouldnt have a termination if it has downs and the midwife said that normally there are markers which can be picked up on 20 week scan. It's just deciding whether to be mentally prepared if the risk is higher.

@kirinm I'm in NI and they don't routinely do those bloods here. We are given a choice if we would like them done and have to book appt but I know that everywhere is different.

Thank you everyone.