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Pregnancy

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

Original poster

Due soon with a risk of Down's Syndrome (sorry it's long)

15 replies

blob2be · 13/10/2006 14:47

I'm 40 weeks pregnant next week and getting very excited about the birth and meeting my baby. I've had a very good preg but looking forward to it ending soon! The only thing which is worrying (well, haunting) me is that my triple test results gave me a Down's risk of 1:110. I managed to be quite philisophical about this at the time and decided against amnio. At first it was really stressful but I soon managed to enjoy my pregnancy again. But now I'm about to give birth it's suddenly at the forefront again. They have put the risk factor on my hospital notes and have said a pedeatrician (sp?) will be there to assess the baby and diagnose Down's, or not. Realistically I know the odds are very small, but I am only 24 and therefore they seem really quite high. It would be great to hear from other mums who decided against amnio in the face of a high risk result, and how they approached their labours and prepared themselves. Thanks x

OP posts:
shhhh · 13/10/2006 15:50

No advice sorry..Hope it all works out WHATEVER the outcome.

Bumping for you in the hope someone will be along soon to offer advice. xx

wools · 13/10/2006 15:54

Hi blobtobe, I am 40 weeks plus 1 day. My nuchal result was a 1 in 88 chance of having a baby with downs syndrome.

I too decided against an amnio as I had one last year with my 2nd ds and had a very stressful pregnancy throughout. This pregnancy has been much better but like you, I still worry that there may be something wrong as the big day approaches. Wishing you all the best.

thelittlestboho · 13/10/2006 15:56

When you went for your 20week scan, did everything appear fine? Where there any anomalies found? I think you're worrying yourself too much, try and focus on the positive for just now. I opted for the amnio,for my own peace of mind, even though my ratio was just slightly below average for my age, so not really in same boat as you. I'm sure the mumsnetters in similiar situation will post soon and you'll feel so much better and a bit calmer.

Tlb.x

Original poster
blob2be · 13/10/2006 16:05

My 20 week scan didn't show any abnormalitites but they did stress that this couldn't rule out the possibility of Down's. I really wish I hadn't have had the tests in the first place as it's really spoiling these last few weeks when I should be just looking forward to meeting the baby. It's the not knowing which is the hardest thing, as I know that I will be able to cope if we're told that the baby does have DS. Thanks for your replies, it's nice to know that other people have made the same choice as we did Wools. And objectively I can see how small your risk is, i just wish I could apply the same logic to myself! How old are you Wools (if you don't mind me asking?).

OP posts:
supporter · 13/10/2006 16:27

There are 109 chances out of 110 that your baby won't be Downs and only one that it will be. If it is Downs babies are affected to a vrying degree. Think positive. I had to know, myself, so I had time to get used to the idea if it was bad news so I had the amnio and my baby was fine

Original poster
blob2be · 13/10/2006 16:40

I almost wish now that I'd had the amnio so that my mind could have been put at rest, or that I could have prepared myself for a definite outcome of a baby with DS. I know that logically the odds are very low, but it is impossible to think objectively and rationally at the moment. I keep catching myself hoping that the baby does not have DS, and then I get angry with myself for wishing such a thing when I am going to love the baby unconditionally no matter what. I just wish that the baby would arrive so I'd know and deal with whatever the outcome is! Thanks for your advice, it really does help, I haven't talked about this with anybody really and that's probably why I'm so stressed!

OP posts:
wools · 13/10/2006 17:16

Blobtobe - I am 42. I sometimes wish we were back in the days when there weren't any tests or scans - I'm sure there wouldn;t be half the worry there is now, although having said that I guess all these things give people a choice.

Original poster
blob2be · 13/10/2006 17:30

I agree Wools. I'd be far happier now if I hadn't had any tests and just left things up to fate. But when they're offered to you it's difficult to resist them. I suppose your risk, when compared to the risk associated with your age only, is not bad at all. I just worry that my bloods must have shown up something fairly drastic for my age-related odds to be changed so much. I just wish the baby would come and all this guessing and philosophising could be over with!

OP posts:
amiami · 13/10/2006 18:25

Hi blob2be.
My test result was 1:110 and I felt exactly how you describe. We decided against the amnio. DD is fine. We were offered another one at 34weeks if we really felt that we had to know whether DD had DS before she was born. I booked this, but cancelled it at the last minute. During the late stages of my pregnancy I hardly thought about the risk at all - and certainly not during labour. I was just so excited about meeting my baby and concentrating on the job in hand - I am sure you will find this too.

The paediatrician was on hand at the birth and came around again the following morning and DH and I did spend a long time peering at her trying to work out whether she had any of the physical characteristics of a DS baby. But we both knew that it wouldn't have mattered at all if she had.

Hope you don't have too much longer to wait. Keep positive.

eidsvold · 14/10/2006 05:48

i have a little girl with down syndrome and our risk was 1 in 5 given the hard marker of a heart defect that they detected at 20 weeks. We had decided it was our baby and she would be born no matter what. Unfortunately labour etc went out the window as I had to have an emergency c-section due to my placenta packing it in.

We had decided not to have an amnio no matter what. basically as it would not have made a difference - she would be born.

There is so much I can tell you about her. now at 4 her heart had been repaired and is just like a new one. She attends mainstream kindergarten, sn kindy and swimming. She is a delight and I can't imagine our life without her.

Come to 2 years ago and our second child was found to have echogenic focci which increased our chance to roughly 4 in 100 ( ir not higher) of having another child with down syndrome. Again we decided against an amnio - this was our baby - she was going to be born. I had an elective c-section and I can remember in recovery just looking for physical markers - jsut in case - but she was fine.

Now I am pregnant with our third - before we embarked on this pregnancy my chance of having a child with down syndrome or any other genetic disorder was in fact 1 in 58 but we are still having this baby. due in March.

No amnio with no3 either.

thread with some links to pics of dd1

eidsvold · 14/10/2006 06:11

sorry forgot to say with no2 - we did not focus on whether or not she had down syndrome except for a quick check when she was born...

Original poster
blob2be · 14/10/2006 11:05

Thanks Amiami and Eidsvold for both your perspectives. It really helps to hear other people's experiences, and makes me realise that I should just enjoy the rest of my pregnancy and look forward to meeting my baby. I know that
Eidsvold, your daughter is adorable! Down's Syndrome seems to be hugely misrepresented during the screening tests - I certainly found that it was, as it was portrayed almost wholly negatively. When I had my high risk result back the midwife called me and the way she spoke was as if someone had died. She just assumed I would have the amnio and I really had to work hard in insisting that I didn't want it! I know that some people think that these tests give women a choice, and are therefore a positive thing. But the fact that such an enormous proportion of women, when they find out that they are carrying a DS child, decide to terminate the pregnancy, is quite disturbing I think. I don't think that the tests should be withdrawn, and I am essentially pro-choice when it comes to abortion, but there definitely needs to be a shift in thinking when it comes to DS. Obviously everybody has their own reasons and has the right to make their own choice - but surely that choice should be fully informed?
I will never have a screening test done again. I wish that I had properly understood the implications of the test and a high risk result. It just seems that there is an important debate which should be going on about the ethics of screening for abnormalities, but it doesn't seem to be happening anywhere in our culture. But that's just my POV!

OP posts:
Original poster
blob2be · 14/10/2006 11:07

Sorry, the message should read that 'I know that I will be over the moon just to meet the baby, whether it has DS or not'.

OP posts:
eidsvold · 14/10/2006 23:33

blob2be - I had a genetic counsellor try and tell me the only thing indicated by a nuchal translucency is one's chance of having a child with down syndrome. Which is not correct - there are a number of conditions that can represent with a thickened nuchal fold. Made me very cross that she was misrepresenting the truth to parents. In fact she was so adamant that I was wrong when I questeioned there that she almost convinced me I was wrong until I came home and checked again.

mummylin2495 · 15/10/2006 00:12

eidsvold your daughter looks a lovly delightful happy little girl,give her a hug from me

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