Active discussions

Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Talk
Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

Down syndrome screening

27 replies

Babiii · 22/07/2021 20:15

Hi guys!! Midwife said that I need to decide if I want screening for Down syndrome- what did everyone else do??
My mum is saying no but me and partner are unsure.

Just don't know what to think or what everyone else does - thank you in advance x

OP posts:
RunningFromInsanity · 22/07/2021 20:19

Why is your Mum even getting an opinion on this?
Having a baby with DS is challenging, I would much rather go into it being prepared.

Original poster
Babiii · 22/07/2021 20:21

@RunningFromInsanity I'm 22 and this is my first baby, she simply shared what she would do rather than a forceful patronising way, she's fantastic and I'm just running to her with every question I have as she has had 3 children herself.

Does the screening hurt the baby or put the baby at any risk? X

OP posts:
RunningFromInsanity · 22/07/2021 20:26

No the initial screening test poses no risk to the baby.
It also doesn’t tell you whether the baby has or has not got DS, just whether you have a high or low chance. If the screening test indicates a higher chance, then you have the option of further tests to give you a definitive answer.

NoMoreTractors · 22/07/2021 20:27

It also screens for Edwards and Pataus syndrome. It's just a blood test.

Vodkabulary · 22/07/2021 20:29

It’s just a blood test to tell you the chances of DS/ Edwards / pataus at this stage.

IWantT0BreakFree · 22/07/2021 20:30

The initial screening test (non invasive) would give you a probability of the baby having down's syndrome. If you were given a high probability, you would be offered further screening to find out for certain. This second screening test (if you opt for amniocentesis) does carry a small risk of miscarriage.

Would the baby having down's syndrome make any difference as to whether you continue with the pregnancy or not? I didn't have any testing because I would not have chosen to have an abortion due to down's syndrome. So it seemed pointless to me to risk being stressed out by finding out the probability, only to then find my baby did not have DS after all. Or maybe they would have been born with it, but 6 months of worrying wouldn't have helped any of us. And I wouldn't have had the amniocentesis due to the risks.

I don't think there's any point whatsoever in undergoing tests for down's syndrome unless you intend to have an abortion if the baby does have it.

Original poster
Babiii · 22/07/2021 20:34

Ahhhh I see thank you!!

OP posts:
RunningFromInsanity · 22/07/2021 20:37

I don't think there's any point whatsoever in undergoing tests for down's syndrome unless you intend to have an abortion if the baby does have it.

I personally disagree. Even if you weren’t going to abort, having a baby with Downs, or Edwards/Pataus is life changing and especially at only 22 years old, you would want to research and prepare.

It’s also very different saying you would never abort a baby with DS and then finding out you have a 1 in 4 chance for example.

(For balance, I would abort a baby if the further testing showed a high chance of those conditions)

msgloria · 22/07/2021 20:41

I think there is a point - if a baby has Down's Syndrome they are at higher risk of certain heart problems. I would absolutely want to know if my baby had Down's Syndrome, so that a plan could be made for medical care when they were born in case it was needed.

Wanttocry · 22/07/2021 20:42

The initial screening is a blood test and doesn’t harm the baby. It also screens for Edward’s and Patau’s, which can be much more severe and many babies with them would not survive to full term, or through labour. If I were to continue the pregnancy, I would personally rather have this information beforehand, because I would not want the additional distress of discovering this during or shortly after labour and having to make potentially important medical decisions without having the chance to research it first.
Obviously things can happen that you can’t prepare for, but for me, this is one I can, so I would.

IWantT0BreakFree · 22/07/2021 20:48

I personally disagree. Even if you weren’t going to abort, having a baby with Downs, or Edwards/Pataus is life changing and especially at only 22 years old, you would want to research and prepare.

Having a few months' head start to do some research would not be worth the risk of invasive testing for me. But we are all different which is why the tests are offered.

It’s also very different saying you would never abort a baby with DS and then finding out you have a 1 in 4 chance for example

I would not abort a baby even if I knew for certain it had DS. Again, other people would make a different choice, which is why they may feel the risks involved with invasive screening are worthwhile.

IWantT0BreakFree · 22/07/2021 20:50

It also screens for Edward’s and Patau’s, which can be much more severe and many babies with them would not survive to full term, or through labour

You don't have to test for all 3. You can have the test for Edwards and Patau but not Down's syndrome.

catinthehat12 · 22/07/2021 21:02

@IWantT0BreakFree

But (correct me if I am wrong someone else) you test for all three by looking at the nuchal fold and taking a blood test, neither of which are invasive screening.

msgloria · 22/07/2021 21:04

Somebody could choose to have the non-invasive tests without then having the invasive tests. Two things are being conflated here.

Hoowhoowho · 22/07/2021 21:12

I didn’t terminate my pregnancy with my daughter who had Edwards’ syndrome but I’m glad I did the tests up to amnio as if you find out postnatally there’s a fair chance you’ll be making decisions about removing life support (or those decisions will be made for you) on day 3 or 4 of your baby’s life. Other families I know found themselves faced with denial of surgery with a days old newborn newly diagnosed. It is far easier to make decisions about the extent of medical care you’d want during pregnancy and to fight for surgeries, oxygen, ventilation etc.

One parent I know was 21 when her baby with Edwards was born, that child is now rising four because of antenatal diagnosis and initial treatment.

Honestly I think the decisions come down to
Would terminate- opt for screening

Would probably want medical care if T18/T13- opt for screening

Want to be prepared for a child with a disability- have screening

Happy to let nature take its course whatever that may be (and that’s a perfectly valid choice)- don’t have screening.

IWantT0BreakFree · 22/07/2021 21:12

@catinthehat12 yes that's right, but that will only give you a probability. If you are told after this initial screening that your baby has a high chance of having any of those conditions, you can then choose to have the invasive testing to find out for certain.

What I'm saying is that (for me, personally) being told that my baby had a high chance of having DS would cause a lot of worry when actually there is still a very good chance that they don't have it (I think "high chance" can be 1 in 150). I (again, me personally) would not take the risk of having an invasive test for find out for certain because even if the baby did have DS, it would not affect my decision to continue the pregnancy. So in my case it would have been potentially a lot of worry over something that was still unlikely to happen and that I still would not know for sure either way until the baby was born.

IWantT0BreakFree · 22/07/2021 21:22

This reply has been deleted

Message withdrawn at poster's request.

NameChanged15729 · 22/07/2021 21:46

I didn’t want it but dh did which made things tricky. In the end I decided to do it because they would be taking blood anyway and I’d be having the scan regardless. What I was/am certain of (haven’t had the results yet) is that if the results come back as high for downs I will not be having any invasive tests. It’s not a reason I would personally terminate for but there is no wrong or right answer there.
I think what you need to ask yourself is what would you do if your baby did have downs? Would you want the opportunity to terminate? Prepare? Keep it?
If the answer is one of the first two then screening is a good idea.

And congratulations on your pregnancy!

JacquelineCarlyle · 22/07/2021 21:54

Congratulations on your pregnancy Op.

FWIW, I'd have the screening as forearmed means you have time to decide / prepare for what you are facing (which is hopefully nothing!).

Also, just because you have the first lot of non-invasive tests doesn't mean you have to have the next set. 1 step at a time.

Peacefulspirit · 22/07/2021 23:13

As a midwife I’m really sad that no-one has explained the process with you. You should be given lots of information before being expected to make decisions about antenatal screening. It’s a very personal choice with many influencing factors. We’re you by oven any leaflets or offered the chance to chat at all?

SouthwestSis · 23/07/2021 00:03

Even if you wouldn't want to terminate any affected pregnancy, you'd surely want your midwives and doctors to know if there was a risk your baby may need extra help and care at delivery so having an idea you're having a baby who may have (will have in the case of Edwards and Patau) additional needs before the baby makes an entrance is a good idea!

Taenia · 24/07/2021 13:50

I had the screening because I wanted to know if there was a chance of my baby having any of the conditions they test for so that I could be prepared and plan ahead if it came to it.

The tests came back a high risk for me and yes it caused me stress but the midwife was lovely Sat me down and talked to me about what my next steps might be. NHS has just offering NIPT testing to those who have a high risk initial screening result which is the next step I took and thankfully it came back as a much lower chance. So I decided to not go onto amnio. I would have done if the nipt came back high risk too.

As I mentioned above.. For me i wanted to know what I was facing so that I could plan and be prepared and any extra care my baby might need was known about in advance before their arrival.

Almondcroissant25 · 24/07/2021 14:42

I had the screening, it’s just a blood test initially. I think it’s good to be prepared for unexpected outcomes. The vast majority of parents I know also did the screening. I didn’t realise it was even a choice until I got pregnant, I thought it was just part of the routine care to do screening tests for these diseases!

8dpwoah · 24/07/2021 14:46

I've had it both times but I am relatively old and also like to be fully informed, I wouldn't have terminated for DS but I would have wanted to know.

Kindly, OP, you are going to have to be a bit more proactive and adult about making decisions now, rather deferring to your mum and the internet to help you form your opinions as there will be a lot of that to come during pregnancy, birth and child-rearing. The NHS website is a fantastic place to start and if you're using an app for your notes the patient leaflets are linked on there too.

PrimeraVez · 24/07/2021 15:12

@8dpwoah

I've had it both times but I am relatively old and also like to be fully informed, I wouldn't have terminated for DS but I would have wanted to know.

Kindly, OP, you are going to have to be a bit more proactive and adult about making decisions now, rather deferring to your mum and the internet to help you form your opinions as there will be a lot of that to come during pregnancy, birth and child-rearing. The NHS website is a fantastic place to start and if you're using an app for your notes the patient leaflets are linked on there too.

100% the second part.