Downs screening. Can anyone help me?

[Redrosebelle]

Hi everyone. I’m on my second pregnancy. The first time round my downs risk came back as 1 in 16,000. This time it’s come back as 1 in 930 which I know is still low risk, but no one (midwife included) can explain why my risk was so much lower first time round. I’m 30, the nuchal measurement was 2mm and I had my bloods done at 12 plus 2. I don’t know whether to be worried. I know I’m still low risk but why are my results so different? The only difference with this pregnancy is that I’m much much more nauseous. Thanks in advance!

[ER1212]

Yes when I spoke to the midwife who called with the results from the hospital she said it was the high / low pattern of the bloods which probably upped the odds rather than them being particularly alarming and that plenty people have up and down blood results whilst there is nothing wrong with the baby. She was very reassuring but then when they still class you as high risk it makes you think you need to act upon it. I was considering not having any follow up tests but dh said we should go for the harmony for peace of mind. I was thinking a girl early on but most people are guessing boy from the scan photos / just guessing in general so I'm not sure!

[Redrosebelle]

Thank you! The nt on this baby was 2.1 and I’m only just 30, so I’m presuming it must’ve been my bloods too, as my risk with my first baby was 1 in 16,000! I convinced myself that my bloods must mean there was something wrong but I don’t think it means anything really. I also think the nhs screening isn’t really reliable, I’ve seen loads of threads where people have been given a hugely high risk only for them to come back fine. I also know you can be given a risk of 1 in 20,000 and for the baby to still have a syndrome. I think you’ve definitely done the right thing, this test is much more reliable. What do you think you’re having?

[ER1212]

Hopefully we'll hear end of this week or beginning of next. The nt fold measurement was normal at 1.8mm and she said baby had no worrying signs but bloods were slightly up on one thing and down on another (I presume the hcg and papp a) but didn't say actual figures. Trying not to over worry! Congrats on the good news, we've asked to find out the sex too.

[Redrosebelle]

Hi, it was a week all together Tuesday - Tuesday evening. That includes bank holiday and the weekend too. Try not to worry fx for a good outcome for you x

[ER1212]

Hi Redrosebelle, was your week wait working days or just days in general? We had the harmony test in Saturday so now waiting impatiently. Our odds were 1 in 144 and its our first baby so worried but still very hopeful as it's still over 99% chance everythings OK!

[Redrosebelle]

Hi all. I couldn’t post on here for the last week as I’ve been kind of worried. But we had the harmony test and it came back low risk for everything today. We also found out we are having a BOY! Thanks again for all your advice. I recommend the test, it took a week including the bank holiday and weekend.

[Isittimeforbed]

How quickly the results come back will depend on which test you choose. NIPT is a generic term and there are lots of different ones that clinics offer, some of which test for slightly different things but they'll all do the three most common trisomies which includes Down's Syndrome. They'll also tell you the sex if you want to know. Some of them have labs in the UK so the results will be quicker but some need to send them abroad so can be a couple of weeks until they get everything back.

[Redrosebelle]

I didn’t say no one has explained my results on here - I meant my midwife and the hospital! I asked my midwife a few times about the results being so different and not once did she mention different blood tests can alter the results.
Thanks for all the replies - have looked into mums as went there for a private scan previously! Just waiting to hear who had appointments today-tomorrow. Seems like the standard wait for result is around 3-5 working days?

[Isittimeforbed]

Redrosebelle, I'm not sure why you think no one has explained it to you. Several of us have said to you that the final result is a combination of age, nuchal fold measurement and blood results. The older you get the higher the background risk is, so it's incredibly common that with each pregnancy you are calculated at higher risk due to your age. Around 2/3 of babies with Down's syndrome will also have scan featires which make the diagnosis more likely, but 1/3 have very routine scans. The NHS currently offers further testing if you're high risk, but your result is not considered high risk. By all means have additional testing if it reassures you, but people have explained the reasons why your statistical risk is different than it was previously.

[babydreamer1]

Just seen you are in the West Mids, are you far from Solihull? We went to MUMS and they were fantastic www.mums.me.uk/ultrasound-scans/nipt-harmony-test/ my Panorama came back in 5 days and they text the minute they get the results, you just call so they can talk you through them then they send a copy via email and post. They always fit us in quickly so they are worth a call. Very professional and staff are lovely.

[KatnissMellark]

Your age will likely have had an impact. The older you are, the greater the chance of DS.

Do you know your Papp-A and HCG result for each pregnancy? It may be that these are different too.

Do you really want to spend £350+ on a test to which you are 99.9% sure you know the answer? It might be worth it for your peace of mind, but seems silly to me.

[tenbob]

Your result is different because your blood tests and measurement are different.

It could be for a number of different reasons, and don't read too much into the 3 years thing.

It's statistical risk. All this means that if you take 900 people who have had the same combined test results as you, 1 will have a DS baby

[Redrosebelle]

I have, I know that my risk of downs is 0.1% but comparing results with my previous the risk seems so much higher. I know it sounds silly in fact I’m sure I sound crazy, but I can’t understand why my result is so different, and no one will explain it to me. I feel like I don’t have any other option

[KatnissMellark]

Redrosebelle, in the nicest and most supportive way, have you done the maths. With those odds, you are 99.9% likely to have a baby without DS. If you feel NIPT is worth your time and money then fair enough, but honestly I wouldn't bother.

[Redrosebelle]

Thanks all. I spoke to my midwife and she didn’t really say a lot except that I could speak to a dr if I wanted to. I am sure I had a paper copy of my scan report but fairly sure we have mislaid it on the day as we had all sorts of bits of papers and leaflets!
The clinics I have found take 5-10 days (depending on clinics) do I go for one who can get my results back fastest??

[tenbob]

It isn't just about which Clinic can fit you in first. You need to check which ones can get the results back soonest

Most of the bloods get sent to a lab in London now, but double check because some tests are still done in the US and the bloods need to get sent there which adds a few days to the time to get the results back

[LastNightsMakeUp]

@Redrosebelle maybe give your midwife a call in the morning and request a copy of your scan report? And ask her to explain the results to you. Hopefully it'll be reassuring for you even whilst waiting for additional tests/results if you chose to do those too.

I have friends who have no idea what their results were, just that they were 'low risk' without any numbers given etc. I think I wouldn't be happy with just that (I'm far too into the details) but tbh I do wonder if it'd take a lot of the worrying away just to be told you were low risk. I think sometimes a little knowledge isn't necessarily a good thing!

[Onceuponatimethen]

If you can’t get a local one nip down to London and go to fetal medicine centre on Harley st. They are amazing

[Redrosebelle]

I wish I’d known about nipt pre 12 weeks. I’d have saved the money up and had it! As it is I have the additional stress of the nhs screening results and still have to pay privately! I wish they offered the more accurate test on the nhs. My midwife offered me an appt to sit with a doctor and discuss my
Concerns so I’ll hopefully go that too. I’m going to phone for the nipt tomorrow and get the first appt I can.
Thanks for all your replies

[MsP0b]

Ps. Forgot to add- congrats on your pregnancy and I am sure you have nothing to worry about. I understand though, lots of us are like that!

[MsP0b]

Nipt is well worth the money. I had it at 10 wks preg and after that NHS didn't even bother with their tests as nipt so much more accurate!

[AveEldon]

The result is strongly pegged to your age - at age 30 at term the standard risk is 1:940. If you are 31 at term it's 1:820

www.qmul.ac.uk/wolfson/services/antenatal-screening/screening-tests/calculating-the-risk-of-downs-syndrome/ This website gives more detail on how they calculate your risk

[whyhastherumgone]

My result was 1:150 and I couldn't understand why. Had private tests done and it turned out I had very low PAPP-A hormone which skewed the results. They removed the PAPP-A factor on screen and my result changed to something like 1:10,000
You might just have a slightly different level of hormone this time around as each pregnancy is different :)

[Redrosebelle]

West Midlands
I have the numbers of three clinics but tbh just want to get in ASAP so will go wherever can see me soonest!

[tenbob]

Where abouts in the country are you based?
Posters will be able to give some suggestions of places to have a Harmony or Panorama test