Downs Syndrome Screening

[MinnieMouse92]

Hello,

I had my 12 week scan today, based on blood tests taken last week, I have been told I have a 1 in 347 chance of having a baby with Downs syndrome. This is just based on bloods, I’m only 28, NT is 1.3mm so is normal, as are measurements taken of the baby’s nose/face. There were also no other abnormalities detected, and baby seems otherwise very active. I had been told that the issue picked up with the bloods could lead to high blood pressure/pre-eclampsia later on, or restricted foetal growth. This is to do with slightly higher hCG than expected (2.3882 MoM) and slightly low PAPP-A (0.4768 MoM). I have had a harmony test and now need to wait 2 weeks for the results. The sonogropher and midwife did not seem overly concerned, but obviously concerned enough to suggest the harmony test. Strangely, I have been dated a 9days further that expected (should be 12w2d, have been dated at 13w4d) which seems strange for a baby they seem to be already concerned for regarding growth?

I’m not really sure what I am expecting, I just wondered if anyone has had any similar experiences and what their outcomes were? As someone who is already very anxious, today was my 3rd scan (had 2 private scans, one early viability scan and one a little later) I was hoping today would put my mind at rest!

Ring your hospital and ask for a screening midwife to ring you so you can discuss your results in more detail. She will be able to help you fully understand what this means.

I thought the nhs only consider results 1 in 150 chance and lower as high risk so isn't your result classed as lower risk? Your scan seems to agree with it being lower risk x

I have been online researching all day as you can imagine, and even the NHS website is suggesting that 1 in 150 or lower is considered low risk, however my letter states that I have been deemed an "intermediate" risk. My midwife did say that at any other hospital, my results would have been dismissed and deemed as low, and that it's only because my hospital have the facility to perform the harmony test that they are doing it - I totally appreciate that they are being cautious and I am grateful, but I also feel that they wouldn't do this harmony test unless it was justified and there was good reason to do so. I have asked to make an appointment with my midwife to have a chat about that, and my dates which I am convinced have been wrongly pushed forward. It doesn't help that all appts are lone visits (understandable) but it's just hard taking it all in on your own isn't it, I even left without getting my 20wk scan date as I was in a bit of a muddle - doh!

Thank you for your responses

@MinnieMouse92What area are you in? You will need to talk to a specialist midwife (so probably not your usual midwife) to get any clarification about this. Do PM me if you want to- this is my area of specialism & I would be glad to help if I can

Hello OP!

Couldn't read and run as I was in pretty much the exact same situation as you a few weeks ago!! I had a 1 in 407 risk, which they deemed intermediate and my levels were almost the same as yours! NT was 1.1mm, pappa 0.49 MoM and HcG 2.7 MoM. I was petrified, had further screening and after a horribly anxiety filled 2 weeks to the point I couldn't sleep and was vomiting-got told I was low risk! Just been for my 20 week scan and have a healthy baby boy no abnormalities detected!!

Please please don't worry - those results are just a calculated risk and tell you absolutely nothing. You have a much much higher chance of everything being ok!

Hope my wee story helps you feel a bit better. X

"The sonogropher and midwife did not seem overly concerned, but obviously concerned enough to suggest the harmony test. Strangely, I have been dated a 9days further that expected (should be 12w2d, have been dated at 13w4d) which seems strange for a baby they seem to be already concerned for regarding growth?"

Also! (Sorry keep thinking of extra things to tell you)

Regarding growth they had said my baby would measure small due to low papp-a but at my scan they've dated him a week forward even though I am 100% sure of my dates of last period!
I absolutely know how it is to worry constantly and question (and google!) every little thing, so hate thinking of anyone doing the same!! They will also give you the choice of further screening for anything under low risk.

Again hope this helps! X

Thank you so much for your responses, such a supportive little network

I got myself in such a state about all of this (mainly because I feel like I didn't really understand many things, including the way my pregnancy had been dated). So I called the maternity unit back, and managed to speak to the screening midwife I'd seen on Tuesday. I asked her if she could please just have a look at my dates again, as I KNEW they were wrong, and I didn't want to turn up for my 20wk scan to be told there were concerns for a small baby again. She said she would look over my scan and measurements with the consultant and come back to me. She phoned me back and confirmed that I had been dated incorrectly, and that now the correct dates (12wks4days) had been put into the system, all values were now deemed low risk! The harmony test had been sent off anyway, so she said we will still get those results, but I think we are going to ask them to just keep on file and not tell us - had my dates have been correct on the day, I'd have never been offered the additional test done anyway! She said they are also no longer concerned about the baby's size, however there is a slight concern regarding high blood pressure perhaps later on, but they are looking to prescribe aspirin to help with this. As a rule, I'm not someone to argue the toss, I'm happy to just listen and "do as I am told", however in the this instance, with the dates that I KNEW were not physically possible, I am glad I stuck to my guns and got it looked into!

Thank you all again xxx

Thank you so much for your responses, such a supportive little network

I got myself in such a state about all of this (mainly because I feel like I didn't really understand many things, including the way my pregnancy had been dated). So I called the maternity unit back, and managed to speak to the screening midwife I'd seen on Tuesday. I asked her if she could please just have a look at my dates again, as I KNEW they were wrong, and I didn't want to turn up for my 20wk scan to be told there were concerns for a small baby again. She said she would look over my scan and measurements with the consultant and come back to me. She phoned me back and confirmed that I had been dated incorrectly, and that now the correct dates (12wks4days) had been put into the system, all values were now deemed low risk! The harmony test had been sent off anyway, so she said we will still get those results, but I think we are going to ask them to just keep on file and not tell us - had my dates have been correct on the day, I'd have never been offered the additional test done anyway! She said they are also no longer concerned about the baby's size, however there is a slight concern regarding high blood pressure perhaps later on, but they are looking to prescribe aspirin to help with this. As a rule, I'm not someone to argue the toss, I'm happy to just listen and "do as I am told", however in the this instance, with the dates that I KNEW were not physically possible, I am glad I stuck to my guns and got it looked into!

Thank you all again xxx