Did you have the Down syndrome screen... - Pregnancy and Par...

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Did you have the Down syndrome screening on your 12 week scan?

TAB27 profile image
29 Replies

Hi everyone, First time on a forum like this and I wanted to ask your advice/reassurance....

I have my Booking appointment at the end of March (I'll be approx 9weeks) and I will be asked if I want to have the Down syndrome screening at my 12 weeks scan and I was just wondering how many people actually have this?

I am not sure I want it as if it came back "high risk" I wouldn't want the next step of fluid being taken from my belly, potentially putting the baby at risk, but my husband thinks we should have it....

Do most people have it?

I'm 33 and It's my first time being pregnant. I'm currently 5 weeks 2 days so very early days.

I feel like I'm worrying counting down the days until my booking appt. I've known so many friends have miscarriages so I know how uncertain things are. I know you can be so careful, doing everything right and it can still happen through no fault of your own and I have been told to try not to worry but that makes me think more about it!

Is anyone else like this? Any tips on how to relax/not think about it? I'm trying yoga and just keeping busy but it feels really scary these first few weeks.

My mum and dad are the only people we've told so far and we won't be telling anyone else until after 12 weeks scan, at least, so just feel like I can't speak to anyone at the moment.

Thank you so much, really appreciate any one who gets back to me. xxx

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TAB27 profile image
TAB27
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29 Replies
roxannacar profile image
roxannacar

I've had them with all 3 pregnanies. Although the last I paid for the private harmony test instead. Its up to if to have it or not. I don't think I would have had an abortion even of it was positive (although I might have for Edwards or patau syndrome which are they other two things they check for). However I think it's really important to be prepared as it can be a bigger shock to find out at birth (although likely to be picked up at 20w scan anyways if severe problems). That's my 2p.

TAB27 profile image
TAB27 in reply to roxannacar

Thank you so much for replying to me, that's a massive help. I feel the same about it being positive for DS which is why I thought that we maybe shouldn't. The midwife on the phone made it sound like not many people have the tests too so I was sort of swayed by that but now I think I'm siding with you and my husband. Thank you so much xx

I did my screening because I just don’t like any surprises 😂 possibly because the pregnancy was such a surprise. Even if it does come back as high risk it’s your call for the next appointment, view them as 2 separate things. The screening is completely harmless

My family thought it was absurd and they never would’ve but to each their own

I found pretty much my entire pregnancy scary and was very anxious but what helped me was my cousin who had a miscarriage. She said no amount of stressing or anxiety will prepare you for the pain of miscarriage & honestly it changed my thinking(might not work for everyone but helped me). I tried as best as I could to do things for myself that I typically wouldn’t be able to do as easily with a child. I also found it really calming to write journal entries every day to my son ❤️

Honestly my pregnancy felt like it lasted for years omg it was so difficult so I definitely feel you

Hope this helps a little

Good luck xx

TAB27 profile image
TAB27 in reply to Tiredtiredtiredxo

Thank you so much for this, it has helped me so much. I think hearing other people's views has really helped. I'm feeling a little alone at the moment. When I asked my mum if she had the scan she said she couldn't remember 😂 so I was kind of stuck for who to ask then without giving the game away. I'm scared to tell anyone in case I jinx it, honestly, I'm worrying about anything/everything.

You're so right though, everything you said makes sense. I guess I'm always worrying/overthinking about something or someone.

Even though we were trying to conceive for about 9/10months, I never truly believed it would happen for some reason. Life has been pretty tough for me over the last few years and I feel like I'm quite an unlucky person so my default thought is expecting something to go wrong, almost like I'm not built to be happy for too long. So now that I am pregnant, I'm so overwhelmed, excited and petrified that something bad will happen, all rolled into one.

I feel I don't want to get excited as something could go wrong but also I don't want to worry, in case it doesn't or that worrying will make it happen. The midwife on the phone said that If I worry I could create more of the hormone that might make it happen - so that didn't help!! I hope that isn't true.

I promise I'm not crazy! 😂

Thank you so much for taking the time to reply.

xxx

Tiredtiredtiredxo profile image
Tiredtiredtiredxo in reply to TAB27

Omg yes I was so alone with it, I didn’t tell anyone outside of immediate family until I was visibly showing at like 24 weeks . For everyone in the family it had been sooo long since they last had a baby they had no clue what I was talking about half the time

I don’t think there are any disadvantages to getting the screening done if that helps xx

Aw I definitely understand the paranoia. When my little one came out last March instead of wanting skin to skin or ‘gazing at him lovingly’ I remember frantically checking he had all of his fingers and toes. I’m just that kind of person 😂😂 and honestly once you have your baby there are more things that stress you (less hormonal) and make you paranoid I think it’s just motherhood ❤️ So there’s nothing wrong with it- it’s normal

Your midwife is absolutely completely wrong about the creating of hormones, I started an undergrad degree in neuroscience I know exactly how hormones etc work and that is bs 😂 I remember spending weeks at a time so low, down, stressed, panic attacks, anxiety induced dizziness, I even fainted at my anatomy scan because I was just so worried & hot & bothered. Now I have the actual happiest (sassiest) healthiest (pls let it stay that way) 1 year old ever

TAB27 profile image
TAB27 in reply to Tiredtiredtiredxo

OMG, I've just burst out laughing in the office! Thank you so much, I feel like we're the same person - apart from the fact you sound like a VERY intelligent person! I just design lighting for a living so when It comes to science my brain stops working! 😂I'm so glad that that's BS because when she said that I was like "Ohhhhh crap! Stop worrying, stop worrying!!" but then that made me worry about worrying!! 😂

I'm debating whether to do the reassurance scan privately at 7 weeks but then think, if I had the scan, I probably wouldn't stop or reduce my worrying until the main one at 12 weeks, would I?

During the Booking in appt do they scan you then? I've tried to google but I can only see that blood tests are taken etc.

xx

Seb9 profile image
Seb9

I have had the screening on both pregnancies that got to the 12 week scan.

Both have come back with low risk and I've not done any further tests. It's entirely up to you whether you have the tests, but I felt that I'd rather be prepared and know what my risks was. The initial screening is not at all invasive, just the scan and blood test and you can choose to pursue a higher risk if you want too. A higher risk doesn't mean they'll have anything so you could just not do any further testing if you chose not to.

You can also get the harmony test which again isn't invasive but might not be offered on the nhs, but you can get it privately,that would show you

It is a worrying time, I don't think anyone can tell you not to worry, maybe just try to keep busy. I decided to cloth nappy with my first and that kept me busy investigating all the different types I also knitted blankets which were rubbish, but have me something to do.

Good luck x

TAB27 profile image
TAB27

Thank you so much Seb9. You're completely right, I never knew about the harmony test before you mentioned it, so thank you.

Thank you for your tips. I think because my Booking scan at 9 weeks seems so long away and I have to just wait, I'm finding it really hard as I'm not having any symptoms other than sore breasts and bloating at the moment. Which I know I should be thankful for, but it's so strange that there is something in there but it doesn't feel like it yet. It's impossible to know if it's doing OK or not and I think I don't do well with not knowing things are OK.

Aww I'm sure they were beautiful blankets!! That sounds like such good advice.

Thank you so much for replying to me, it's really helped. xxx

Seb9 profile image
Seb9 in reply to TAB27

With my little girl I had no symptoms, didn't feel sick and still had lots of energy and felt like I was making it up. I felt like a fraud at my appointments, until I had my scan I absolutely thought I must have a faulty wee that made tests positive 😂When they showed me the little person on screen waving I was absolutely amazed.

With this pregnancy I had my booking in appointment and because I'd already had gestational diabetes, I had to have an early glucose test, and I've got it again, so I had loads of appointments before I'd even had my 12 week scan, again I've felt like such a fraud, going to the diabetes clinic for appointments when I hadn't seen that little bean on screen. I had my 12 week scan last week and finally feels real! Now I just have to get to the 20 week scan!

I've decided against knitting this time, our favourite blanket actually ended up being one my best friend gave me from TK Max 😂

TAB27 profile image
TAB27 in reply to Seb9

Oh that's amazing news, massive congratulations!! Thank you so much for sharing your story. You've honestly helped me so much today, more than you'll ever know. Thank you so much xx

Beanybeanz profile image
Beanybeanz

Hi,

I had it and all my friends had it.

I think (in my experience), it’s more of a making a conscious decision to opt out, and most people just do it cause it’s not really an additional faff- just a measurement within the scan you were already having and a blood test.

My attitude is why not if it’s offered, if you know you’d know you’d keep it then all it can do is help you prepare for every eventuality, and if you know you wouldn’t then it’s best to find out earlier. (All just my opinion😆!).

Am now 27 weeks after ICSI/IVF treatment so have taken any opportunity to check anything !

xx

TAB27 profile image
TAB27 in reply to Beanybeanz

Massive congratulations on your pregnancy so far! 💕 Thank you so much for sharing that, it really helps. The midwife on the phone made it sound like most people didn't do it so that's why I thought I'd ask, thanks for helping me decide. Thank you for sharing what your friends did too.

I'm so glad I asked on this forum because I do feel like a weight has been lifted today, you're all so lovely xxx

Beanybeanz profile image
Beanybeanz in reply to TAB27

I can see why you asked on here- The midwife shouldn’t really be giving you anything to sway decisions rather than scientific facts - maybe in her area /type of midwife she is / type of women she sees, that might be true but it’s obviously going to sway you because we all take every little thing they say as gospel - but good job you asked, you’ll get a range of women(and some men!) on here from all over the world, all with different experiences to help you make a balanced decision - it’s entirely up to you at the end of the day 😊 x

Beanybeanz profile image
Beanybeanz in reply to Beanybeanz

p.s if it were the amniocentesis that’s different I wouldn’t be giving a strong opinion on it as it comes with risks, however this check is entirely harmless 😀 xx

TAB27 profile image
TAB27 in reply to Beanybeanz

Yes I agree, I don't think I would want that procedure if it did come back as "high risk" as it poses a risk to the baby. but as you all say the first is non invasive and no risk to me or the baby. Thank you so so much again. xx

DanABC20 profile image
DanABC20

Hi, I am on my 4th pregnancy. This pregnancy is Ivf. I had the screening done with babies 2, 3 and 4. It wasn’t offered with my first but they used to have markers on the scan. With this pregnancy the fluid behind the neck had two amounts. I worried franticly but I was reassured and told it was very normal and within range. My bloods came back low risk. I was never forced to have the screening, but I’m glad I did as if anything did show, which it still can at further scans we’d be prepared. There is no right or wrong answer. Just for me and my husband personally we wanted to be prepared for when our baby was born. I saw

No harm as it didn’t actually hurt baby it was within our routine scan and a blood test. Xx

TAB27 profile image
TAB27 in reply to DanABC20

Aww congratulations! Thank you so much for your reply. Yes I think we are going to have it done now after so many amazing replies. You have helped so much and really put my mind at ease that it's basically the norm to have it done and not how the midwife on the phone made it sound. Thank you, thank you, thank you xx

I’ve had 5 mc before this pregnancy so I was very nervous I’d lose this one too, I had scans at 6/10w then 13w & had the screening at 40 yrs old there’s a higher possibility of downs symptoms so I definitely wanted to know either way if I didn’t find out and waited until birth I feel I’d worry the whole way through my pregnancy what if. Luckily it was low and with my other 2 children i had at 25&27 it was low too. I’m 27w now everything is good I also had scans at 16&19w.

TAB27 profile image
TAB27 in reply to

Congratulations on your pregnancy and I'm so sorry you had to go through that, multiple times. 😔 Thank you for sharing your story with me and being so open to help me make my decision. I'm definitely considering a reassurance scan at maybe 7 weeks. Have a beautiful evening xxx

in reply to TAB27

Definitely worth an early scan if your anxious 12w is a long time to wait x

Lolabean2020 profile image
Lolabean2020

No advice on the screening other than to say I’ll have it as like others have said I think I’d worry for the rest of the pregnancy otherwise. Can completely relate to what you were saying about feeling strange like it’s not real - this was the reason I went for an early scan at 7 wks +1 and it was amazing! Would definitely definitely recommend this just to put your mind at ease that something really is happening in there and it’s all looking ok so far 🤞🏼 I can’t believe we’re expected to wait and just accept everything is plodding on for 12 weeks without being able to see it! I think the worry is all completely normal and accepting those thoughts will come makes it slightly easier for me. I’ve also been trying to use the calm app everyday to try clear my mind and relax and that’s really been helping. Good luck with everything 💜

TAB27 profile image
TAB27 in reply to Lolabean2020

Thanks so much for this. I woke up this morning feeling completely normal, not bloated, not tired and it felt weird so I thought again about booking the 7 week scan for the same reasons you say. I've also had pains or aches sort of down my left side so that is worrying me a little. I've read that it can be wind or just your stomach adjusting but it's only down the left so I'm over thinking that a little.

Thank you for replying to me, it's nice to not feel alone xx

I had the screening tests with my first two pregnancies as I knew that if it came back positive for Edwards or Patau my partner and I would have considered our options. We were both of the same mind with that so it was an easy decision. Different tonyojr experience, when they first spoke to me about screening it came across that people generally had it. I have bo idea what the actual stats are re that. With my third pregnancy we were all lined up to have the screening again but it turned out we were 14½ weeks along when we thought we were 12 weeks and they can only do the screening for all three up ton14 weeks, so we only got results for Downs. It actually left me feeling a bit worried for the rest of the pregnancy that we didnt know, especially with two children already.

It's very much up to you as a couple to work out what's best for you. I would recommend a full and honest discussion re each if reasons for wanting or not wanting the test and what you would or wouldnt consider based on the potential results. Personally, even if I had no intention to act upon the result and her the further more intrusive test, i would still want to know the first odds, just so i could either ease my mind or prep myself for the possibility. If that's all your partner wants to do then you are actually on the same page re any actions, he just feels more comfortable knowing and it is no risk to you or the baby to gain that knowledge, so unless it will make you more anxious for the remainder of the pregnancy if the result does show a higher risk then I'd say to have the tests. But if it turns out you have differing opinions re follow up actions then it's a bigger discussion, and therefore its even more important to have that talk.

Unfortunately, no one can answer this one except you and your partner. Either way, I'd make the decision as soon as possible so that you can remove that one extra thing to worry about. As for your anxiety ahead of th first scan, I think that is totally normal. I had it with all 3, but you will feel much more comfortable once you have seen your baby... until the run up to the next scan 😂

TAB27 profile image
TAB27 in reply to

Thank you so much for sharing your story, I really appreciate it and it has really helped. Yes we have both had the conversation again since and we both agree that screening during the first scan would be the right thing to do then we will cross the next bridge, if required, when we have to. I think we will book an early 7 week reassurance scan, then have the screening at 12 weeks. Thank you so much xxx

ChrissyR85 profile image
ChrissyR85

Hey Tab27, congratulations first off 😊

Me and my husband decided to have the tests done, mainly for edwards and Patau syndrome, but they test for downs also. And I was told even if they come back ‘high risk’ there is an easier way they do the next part of the test rather than taking fluid from the tummy nowadays, it’s no risk to baby either.

It’s good to have the test for peace of mind tho xx

TAB27 profile image
TAB27 in reply to ChrissyR85

Thank you so much Chrissy!! I definitely think we're going to do it and I booked a private reassurance scan for 8 weeks (20th March) yesterday too just so I know that everything is doing OK so far xxx

ChrissyR85 profile image
ChrissyR85

Absolutely, I think I have had about 3 reassurance scans as well as my 2 nhs ones, I just wanted piece of mind. I’m currently 30 weeks and resisted the urge to book anymore, once you feel baby moving it’s very reassuring xx

louihw profile image
louihw

I had it and came back high risk but instead of the next risky fluid test offered on NHS I paid £400 for a private blood test (just had it a a local scan place) that is much more accurate than 1st test and that came back low risk. So all good! So that's always an option if needed.

TAB27 profile image
TAB27 in reply to louihw

Oh wow, I never knew that. Thank you so much. Thats really put my mind at ease xxx

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