Screening for Downs - does everyone do it?

[miamix]

Wondering if anyone would like to share their views?

I had my booking appointment yesterday and was given the option of screening at 12 weeks for Downs Syndrome. I am 24 years old and healthy, and to be perfectly honest screening wasn't something I had thought much about.

My first instinct was not to bother, because it will just make me worry even more. I am getting stressed about every tiny thing during my pregnancy as it is, and obviously high stress levels aren't good for the baby.

I was also wondering, if I did opt to go for the screening, and was told there was a high risk factor, is this necessarily always accurate (obviously prior to further testing) in the likelihood that the baby will have Downs Syndrome?

Did anybody not test? Why?

Any thoughts appreciated, thanks.

I agree with most of the posters here: if you wouldn't abort the pregnancy and would go ahead anyway, then don't bother with the tests. However, please also remember that termination and disabilities are highly emotive issues. People all have their own opinion based on their ethical/moral/religious viewpoints, MW's included. It's very difficult to get independent advice. If you think you might want the tests, research them first and get some actual facts and statistics about the pros and cons. (Google was great for this.)

The nuchal scan at 11-14 weeks only gives an indication of the likelihood of Down's. Usually right, but can also be totally wrong. It could give you a false sense of security and a shock if a low risk test resulted in a DS baby. Think about how you would cope or react if that happened.

Amniocentesis will give you a definitive yes or no because they look at the actual genetic material. But it does carry some risks. How would you feel if you MC a healthy baby? However the risks are perhaps not as high as some people would have you believe. The risk of MC is reduced at hospitals where the staff regularly carry out the procedure. Further, as an 'unhealthy' foetus will have an increased risk of MC, women who have had the test may MC not because of the test, but because they were already at risk and would have anway.

And then look at the DS Association website. Find out what having a baby with Down's really entails - there are different levels of severity and it's not all doom and gloom.

Then if you want to know what I did - I went straight for amniocentisis and didn't bother with any pre-screening. I wanted a yes or no. It didn't hurt and MC rate at my hospital was less than 0.3%. For me the risk that I might miscarry a healthy baby was something I felt I could live with more easily than the thought that I'd have to care for a child with Down's. But that's just me. My entire family would disagree and would shoot me down in flames if they ever found out.

And don't stress about your pregnancy or worry about the money. No-one, on paper, can ever afford to have children but everyone seems to manage. It just falls into place somehow.

Actually I very much agree with sungirltan - I was prepared for a Down's baby, however I'm not sure I could've coped with spina bifida and after our 20 week abnormality scan we discussed in the car home that neither of us would have wanted to continue the pregnancy for that... but until then we'd not talked about it

I haven't had the down syndrome test, the way I see it is that if my baby is born with DS then there is nothing I can do about it, plus I wouldn't abort her if I knew that she had it so I didn't really see any point in having the test.

I did not have the screening- DH and I would not have terminated no matter what the outcome and I would not have agreed to more invasive testing.

No one pushed it at the time but as it happened DS was extremely premature and the neonatal staff asked me about the screening results and seemed a bit surprised we hadn't had it.

We did have a 20 week anomaly scan which was fine, but subsequent detailed scanning saved DS's life.

we didn't test - we were ready to love and care for whoever came our way really so didn't see the need.
I also expected anything major that might require medical attention to show up on the scan (which was a bit naive as it turned out - dd2 born with huge hole in the heart that didn't show up during the u/s).

BaronessBomburst good post. I felt the same way as you and the chance of miscarriage does vary from consultant to consultant. Next time, if there is a next time I will skip the Nuchal testing and go straight for the Amnio.

I did have the blood test and the nuchal scan (twelve week scan)but I do wonder why I bothered! I think I hoped it would be reassuring as I am in my 40's,but although it was with dd1 (1-50,000 odds given) it was less so for DD2 (1-160)although the odds were still better than the basic ones for my age at the time.I didn't have any further tests as I would not have terminated the pregnancy,so risking losing the baby just to have a few extra months of knowledge seemed insane.Neither child has Downs.I would think there's not much point in having tests unless you are certain of what you would do with the information.Hope that is helpful,and best wishes.

With my first pregnancy I didn't have any tests other than routine scans. I wouldn't have terminated if it had shown DS anyway so didn't see the point. Similarly with my second pregnancy I wanted my ds to have a sibling so didn't have any testing.

I don't want to have the test due to many of the same reasons others have posted. However, my doctor has said if I don't have the nuchal scan at 12 weeks to test for downs, I can't have a scan until 20 weeks.

I said I just wanted the normal dating scan I thought everyone got at 12 weeks but she said I can't just have a scan because I want one, there has to be a medical reason. If I don't have the nuchal scan for downs I can't have a 12 week scan.

I'm really annoyed as this is my first pregnancy and I'm keen to have the 12 week scan just to see it is growing ok and make everything feel real. I now feel I've been pushed into getting a test I don't want to be able to get the scan.

Has anyone else had this?

I didn't do ANY AN testing. To me abortion is wrong no matter what the reason. It's highly personal and don't feel pressurised either way (easier said than done)

Zippy that sounds really odd. Surely you can have the 12 week dating scan without the nuchal scan? How awful.

I had a nuchal scan to test for the possibility of Patau's syndrome/Edwards syndrome, as I sadly lost a baby to Patau's. I had no nuchal screening for that pg and I wished I had found out earlier tbh.

It is not just about Down Syndrome, people always forget this.

zippy - they couldn't even do the nuchal scan for dd - she wouldn't stay still long enough! apparently this is quite common though

i would ask for a second opinion because i thought the 12 week scan was a 'dating scan' to determine for sure how far along you are - the process of the nuchal scan is done after the dating but they arn't the same thing. be pushy if you need to

skihorse - thanks - i was expecting a flaming for my opinion but i spent a lot of my pregnancy working with a teenager with spina bifida. she was wonderful and i miss working with her but SB is so hard. children with this condidtion do not always have learning difficulties and are acutely aware of how thier physical disability is limiting their life. my service user was so frustrated that she coudln't be like other teenage girls and go out on her own/not be incontinent etc etc. i'm not sure i could bring a child into the world knowing for sure that life will be a struggle in that way.

birth defects which cause learning difficulties more often than not result in the child not being as acutely self aware/frustrated/miserable

In response to helens message at 11.28 edward's syndrome isn't always fatal at birth. Some children can live for quite a few years.

I missed my screening at my 12 week scan as i was 14 weeks. I was offered the triple test blood tests which i refused due to not wanting to abort baby with DS anyway and as others have said i was worrying about enough things without adding another. I did do the triple test for my son and that was fine.

OP - as you've discovered, in answer to your question, no not everyone has the tests!

I have a friend with DS who is getting married soon; and he and his fiancee live together, independently. They need more support day to day than you or I, but they have jobs and friends and fulfilling lives. In light of this (though I know DS is sometimes more severe) it never even crossed my mind to have the tests.

Thanks SunTanGirl, think I will as I don't know anyone else that has been told this. Have got my booking appoint in a couple of weeks so will discuss with the MW.

Highly personal choice as others have said.
Think about what you would do with the information.
I refused everything with my second pregnancy
(a bit more with it than during my first) and lo and behold my DD was born with a life threatening birth defect - I wonder all the time even now what any tests/extra scan etc would have discovered and what we would have been advised to do.
Scares me to think that we could have been misinformed (very unusual condition) and I wouldn't have wanted to know about her problem beforehand.
Good luck with everything.

"When we had a 4D scan at 30 weeks and saw his face, we knew beyond any doubt that this child is not Down's"

I am sure you are right, but several paediatricians checked over/examined my son after his birth and the next morning, saying I could go home before anyone realised he had Downs.

I had the screening for Down's in my first three pregnancies without really giving it much thought. I was 'low risk' in all of them. DS3 was born with Downs Syndrome. I was 27 when I had him.

I declined the screening in my subsequent pregnancy as the test is notoriously unrealiable (almost everyone I know who's child has Downs had the screening and it came back 'low risk') and I really wouldn't have cared if I had another child with Downs, it is SO not the end of the world and life an carry on pretty much the same as it would have been if DS3 didn't have Downs. There are no real financial implications, I would have been able to continue working if I wanted to, and did so, running my own busines when DS3 was younger. Plus, we ar eentitled to DLA and I get carers allowance.

I had the test without thinking with DD1 and it came back as a 1:100 risk. I was 31 and completely shocked - never occured to me that anything could be wrong. Had an amnio and the time between being given the initial risk result and the amnio (clear) result was pure torture. With my DS1 and DD2 I had an Oscar test privately because the double test I had done in my first pregnancy is hopelessly unreliable and inaccurate. Saying that - both times were clear by miles (1:7000 or similar) and DD2 was born with a blocked intestine and they thought she had Cystic Fibrosis - which doesn't show up on a scan/blood test (but sometimes on an amnio/cvs if is right mutation). Luckily she doesn't have CF but it makes you realise that you never really know what you're getting. And sometimes I look at DD1 and can't believe I risked a miscarriage just to know and we might have lost her.

really, the miscarriage risk is very small though.

Sungirltan not all people who have spina bifida are badly affecte dby it. My friend's daughter, who is 13 has it and I wasn't even aware she did until my friend told me. She leads perfectly normal life, does sports etc. I also know an adult with Spina Bifida. he is a wheelchai ruser, but can walk with the help of sticks etc. He is in some pain, btu says he thanks god his parents didn't have the option to terminate him.

I think a lot of the reason people chose to terminate pregnancies where the baby is known to have a 'disability' is misconception. Prior to having my son with Downs I might have decided to terminate, mainly as I didn't think I would cope (I am not that maternal and can be quite selfish) and because I didn't think it would be fair on my older children. Neither could be further from the truth in reality.

sungirltan - the risk of cerebral palsy is about 1 in 500, so much higher than 1:1000 for any disability. but you can't test.

Well we weighed it up and worked out that the risk of a MC resulting from unnecessary secondary testing (using the risk of requiring secondary testing, the risk of the initial test being inaccurate and the actual risk of MC) was greater than the average risk of Downs for my age group. So we declined the test.

The screening test is only about 66% accurate IIRC, ie it misses one in three cases. And even if your risk is 1 in a million, that's no help if you end up being the one.