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Antenatal tests

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Testing for Down's?

16 replies

ChangeMyHappy · 24/04/2012 14:39

Hi, I'm 42 and happily pregnant with DC2.

I'm aware that the screening tests are not conclusive, although the invasive ones are. I don't want to risk a miscarriage, so would decline CVS or amnio.

Given that we wouldn't terminate anyway, I'm wondering does anyone have any advice as to how important it was for them to be prepared for the outcome?

Were you given a high likelihood only to have a healthy baby? Did you spend the pregnancy worrying unnecessarily? Or were you given really great odds and reassurance and then the surprise/shock of a baby with extra needs?

I'm tempted not to test, but wonder if I'm sticking my head in the sand when I could be preparing etc...

Any input welcome :)

OP posts:
OneOfMyTurnsComingOn · 24/04/2012 14:43

Well I'm 40 in June, and I'm not having any of the tests. Not even the nuchal fold. I wouldn't terminate unless maybe it was life threatening or something so I may not be able to answer your questions fully.

Marrow · 24/04/2012 14:45

I don't have any screening when pregnant apart from normal ultrasounds. Like you I wouldn't terminate so don't see the point of testing. I've always believed we would deal with it when it happens and no point worrying yourself unnecessarily whilst pregnant.

Enjoy your pregnancy Smile

ChangeMyHappy · 25/04/2012 16:30

Thanks, that's what I think we'll do Marrow, I was really just wondering if anyone had regretted their decision-either way?

OP posts:
WipsGlitter · 25/04/2012 20:41

Well we didn't have any tests and DS2 did have downs. When I had him i used to wonder would it have been better to have known and been prepared, but I've never really worked out if it would have been. It was hard to tell people (still is, it is hard to tell he has downs) but you get used to it.

GracieW · 25/04/2012 21:32

When I was pg with DS1, I was told he had a 1 in 300 chance of down's which is quite high. But as DH and I would not terminate anyway we didn't have any tests. I don't see the point if it would make you worried!
He doesn't, btw.

TodaysAGoodDay · 25/04/2012 21:38

I was given a 1 in 30 chance of having a child with Downs. I had the amnio test as (now X) and I were 48 and 36 respectively and didn't feel able to cope with a SN child. DS didn't have Downs but I would have terminated him if he did. I know it sounds harsh but that's how I felt.
If you're not going to terminate anyway, why cause yourself more hassle? Have a lovely, happy and complication-free pregnancy Smile

Sandalwood · 25/04/2012 21:39

I haven't had the tests as I'm 40 so that combined one would've come back as high risk anyway and I knew I wouldn't want the amnio one, so there wouldn't be a lot I'd do with the knowledge of being high risk.
Do babies with Downs Syndrome have much extra needs? They still need milk, nappy changes etc as any baby.
I know that there can be heart problems, but the scans are reassuring there.

saintlyjimjams · 25/04/2012 21:49

I don't think you can prepare for a baby who is disabled tbh. Unless a baby with DS has medical needs that need taking care of at birth (and some do, although there's a good chance that would be picked up on a scan althoug it's often hard to predict severity antenatally - I know of cases of dire warnings given during pregnancy which were found to be nowhere near as problematic at birth) then a baby with DS is pretty much like any other. The differences come later by which you're not going to be dealing with the emotional side iykwim.

There are few blogs about describing the birth of a baby with DS which might be helpful this is probably one of the better known ones

You sound pretty sorted and happy with your decision to not have invasive testing. The odds are very much that your baby won't have DS anyway so if you're feeling very calm and wouldn't terminate, why rock the boat?

saintlyjimjams · 25/04/2012 21:50

oh bloody editing, by which time you're not going to be dealing with emotional side so much. I just mean by the time differences become apparent you're long past the newness of a diagnosis.

ChangeMyHappy · 26/04/2012 08:12

Thanks everyone for taking the time to answer, I think you've pretty much confirmed my thoughts-I'm bound to be given a high risk due to age, so will stick with not testing. Fingers crossed for a healthy pregnancy, then we'll see...:)

OP posts:
nearlymumofone · 26/04/2012 22:51

I'm pg with dc2. On both occassions I have had the screening as a matter of course, kind of just because (and also dp wanted it and I was too tired to argue!). With dc1 I got 1:11,000 and so didn't worry for the rest of the pregnancy, with this pregnancy i had a higher nuchal measurement 2.9mm and a risk of 1:153. I worried day and night for weeks. But wouldn't have invasive testing as I would not terminate for downs and would not for the risk of miscarriage. I had my 20 week scan and all seemed fine (although they can't rule out downs or anything else)., and so I've given up worrying now.

If I am ever pg in the future I won't bother with the screening. Given that I would not terminate for downs or go on to have the invasive testing it was all a bit of a needless worry. Yes there could be problems with my baby, but given that I am keeping he/she no matter what anyway it probably would have been better to be ignorant of any problems and to have just enjoyed the pregnancy.

devientenigma · 29/04/2012 21:51

I had the blood test which came in at 1;276 ratio, at my hospital it was classed as low risk as there cut off point was 250. My son has down syndrome and to answer sandlewood some kids with DS can change your world dramatically due to the issues/problems they have.

devientenigma · 29/04/2012 21:52

sorry spelt your name wrong x

devientenigma · 29/04/2012 21:53

my son also has a heart problem that will never be fixed, he just needs open heart surgery to help at times. A lot of it was structural and not picked up on scans, however this was 11 year ago.

Sandalwood · 30/04/2012 17:39

Oh crikey devientenigma, I don't mean that children with downs syndrome wouldn't change your world.
I'm more thinking about newborn babies, and that there's perhaps not a lot of extra preparation I can do at home during pregnancy to prepare for it.

devientenigma · 30/04/2012 18:31

Hi Sandalwood my son as a baby although in and out of hospital frequently where at times weeks were spent there off the trot, however what we done was DH stayed overnight and went to work from there. As I got the kids off to school I would go straight over and stay with DS. School picks and easy meals (microwaveable) to take to the hospital, met DH back there, then at bed time we left he stayed iyswim. DS was also tube fed and oxygen dependant requiring you to be able to manage all this on your on. Then hopefully you will get invited quite quickly to different groups for OT, physio etc
As for prep, I don't think anything can prepare you as they all progress at different rates and you really don't know what road you are to go down until you are travelling. Just treat the baby as a baby and do everything you would for any other baby you would have. You learn to adapt and the love/bond you have for a child with disabilities is a bit different, for want of better words, I think it's because you know they are more vulnerable, need more nurturing and all the medical brings a sense of longing.
HTH and is better than my last post, I just hate people making DS is one of those disabilities thats easier to manage.............some are not! My son is not supported by the LA, he has so many issues it's easier to leave him at home than deal with him. So I now have a challenging and complex 11 year old at home 24/7, he's also 2:1 ratio so doing anything and going anywhere is a risk while DH is at work. However DS most times won't leave the car to go or do anything.
All that said I love him so much and my life would be so different without him.

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