1 in 90 chance of Downs Syndrome

[Xanadu44]

Hi there, I am 15 weeks pregnant (and two days) with my first baby and I am 35. I had a phone call from the midwife today regarding my quadtest result. She said we have a 1 in 90 chance of Down syndrome. I just panicked and don't really understand the numbers. She's told me about options etc but I am just feeling really upset and overwhelmed right now and just wondered if anyone has any experience on this because I just feel like I am drowning in hormones and uncertainty and just feel out of my depth. Thank you x

Can you look to see if you can get the harmony test? That gives you a clearer result I think it's more yes or no. Think it's only available privately but it's non invasive via bloods I think.

Sorry you're going thro this stress.

SAFE test (same as Harmony) is now available on the NHS for high risk cases - I think you would now come under this. I would check with your midwife and go for this as there is no risk (blood test only).

NIPT (Harmony test) if the NHS wont offer it then you can get it done privately for around £400. I am 10 weeks and have arranged to have the test next week regardless. Hope your ok.

Sorry to hear you're feeling panicked and upset There are further tests you can have done - there's the amnio which carries a very small risk of miscarriage, or the Harmony test that others have mentioned. If you're not offered it on the NHS, it might be worth paying if you can stretch to it so that you get peace of mind.

Try and keep calm and think of everything in perspective if you can (I know it's hard!) 1 in 90 is only a 1.1% chance of having a child with Down's - that's still really, really unlikely. Best wishes.

Thanks everyone I've calmed down a bit now. I think I was just a bit shocked and the percentage there helped me a lot! Yeah I think we're going to go with the tests, I just don't know what "normal" is on this result? Is there an average? I presume most people are above 1 in 150?? It's all just so confusing!!

My result was 1in5!!! We did the amnio and it came back clear with my other children it was 1in58000 and crazy things so when we got the 1in5 it was a huge nasty shock but we found out instead of worrying, we were not bothered if it was Down's syndrome but it could have been Edwards or pataus and we had to know what we were dealing with. Thankfully it was all clear. Good luck

Every pregnancy has the possibility of things not being straight forward. Try not to panic.

What test have you already had? Any non-invasive test (blood test) will only give you a probability of Downs. If that probability is higher than the probability of a miscarriage associated with an invasive test you will be offered an invasive test (amnio or CVS depending how many weeks pregnant you are). I think the probability of a miscarriage associated with an invasive test is about 1:100.

Everything is explained on the NHS website [http://www.nhs.uk/Conditions/Downs-syndrome/Pages/Diagnosis.aspx here] so have a read and if you have other questions do speak to your midwife again. Maybe have someone with you and a list of questions you want to ask before you talk to your midwife to make sure you get answers to all your questions.

It's normal to feel worried about this kind of thing and that does make it difficult to take in all the information so midwives are used to that and won't mind you going back for more information in a day or so.

Bugger, link fail [[http://www.nhs.uk/Conditions/Downs-syndrome/Pages/Diagnosis.aspx here]]

I had a 1-30 chance with my dd from the nuchal fold measurement. Went to another hospital for a second opinion and found a normal result.
My dd is ten tomo and perfectly fine.

Ask for a second opinion. .

I had a 1 in 60 chance, decided to have an amnio which ruled out Downs. Dd is 19 now and is fine.

Thanks everyone this is all really helping! I think today was a bad day for me to get this result as I am just not feeling myself and have been all teary ever since (which is definitely not like me!) we're going to go for an amniocentesis after speaking to the midwife. Thanks so much this really has helped me LOADS x

I had a 1 in 72 risk with DS2 and had an amniocentesis. Feel free to PM me if you've got any questions. It all came back normal and DS2 is now 4 and perfectly healthy.

I know it's hard but don't panic! Just because of your age, you almost automatically end up higher risk according to the NHS criteria. I'm 41 and 9 weeks pregnant so have been reading up on this a lot lately!

If you can afford to, try a more comprehensive diagnostic test like Harmony that carries no risk to your baby, or ask your midwife about your further testing options.

Remember - don't panic! I plan to pretty much disregard the NHS combined test in favour of Harmony.

We had a 1 in 10 risk, after cvs and various other scans all came back clear, very very stressful time though!

I had a one in ten chance with DC3. We got the Harmony test and were given the all clear. He is fine.

There is a great charity called ARC who have a phone advisory services about antenatal tests. THey were really helpful to me.

Remember at 1 in 90, you are likely to have no issues 89/90 times. That's a 98.9% chance that everything is fine.

Can you access the NIPT via NHS or afford it privately to out your mind at rest.

If not, for me, I would continue the pregnancy without the amnio as the risk of miscarriage is almost equal to the risk of downs you have been given and therefore IMO, not worth it. You should weigh this decision up with what you would do if the amnio diagnosed downs- for me I would continue the pregnancy so could wait until 20 weeks for further info/diagnosis if required. Remember the most likely outcome is to get to 20 weeks and everything look fine.

Sorry you're going through this, pregnancy can be very tough

i was 1in5......go to the antenatal testing board, lots of great advise. I had harmony, it came back 1 in 10,000

That's the best way forward is to find out, we got our results the very next day and also the hospital told us their chance of miscarriage from the amnio was 1in1000 so I felt very safe having it done. It was uncomfortable and I did ask them to turn off the screen as I didn't want to see it happening but they showed me my baby after they were finished

I had a 1 in 21 chance at 36. I had the amino and all was fine. The miscarriage risk is a bit misleading, when I left over into it the risk is based on data from y are ago when they did amino without scans (to see where they are poking the needle) so of course the risk was present then. But now they can see what they're doing, the risk is pretty much non existent. It also doesn't hurt, just feels a bit strange.
Good luck x

Oh god I should proof read! I think you get the gist

Try not to panic. I am 39 and my result came back as 1:28. My husband and I decided to go for the NIFTY blood test and our result for DS came back as over 1:4million. Our test also included a 3D scan and cost £450.

I had the Harmony test after getting a similar initial result.
My advice would be decide, if you can, before any further testing what you would want to do should you end up with a high risk or definite result. We never managed to agree on a decision and I found that incredibly stressful whilst waiting for the Harmony result