downs syndrome low risk....

[kizzibear]

Although Im in third trimeester and had a risk factor of 1:35000 for down's syndrome, it has started me wondering.

I know of a lady who had a risk factor of 1:50000 for Down's syndrome,but still gave birth to a downs syndrome baby anyway and now I am worried (Im sure there is no need.

Has anyone else had any experience of this, or know anyone with a similar story?

[ShowOfBloodyStumps]

Well of course it has to happen doesn't it. Because it's not 'no risk'. It's 1 in x number risk. Somebody will be that 1.

1 in 35,000 is very, very low risk. I think my risk was only 1 in 700 which is comparatively quite different but stil v low risk.

You have a 34,999/35,000 chance of having a dd without Down's Syndrome.

What is it you're worried about? Say your chances were very different, the risk considered high, what would that change? Would you have had further tests? Would you have continued with the pregnancy anyway? Is it fear of the unknown? Do you know anybody with Down's?

If you can identify what it is that worries you, you'd be better placed to tackle it.

[kizzibear]

The worry is everyone who says to me'oh your baby will be fine then' I know she probably will be, and I will love her no matter what, but after miscarriages in the past, I want everything to be ok, and would hate for there to be something wrong. I always assumed that baby would be fine, but the lady I know who had a downs syndrome baby despite her risk factor has shook me up a bit.

[paisleyleaf]

and how are that lady and her baby doing now?

[kizzibear]

Well she wasn't coping very well, and baby has had to go in to hospital because of heart problems.

[kizzibear]

yez your very right Lunaticfringe. It sounds silly, but the realisation that I am going to become a mum has just dawned on me. Now that the last few weeks are here, its got me over thinking on everything! I know once baby is here, I will continue to worry about her,but at the moment I feel helpless to a ertain extent, as I just have to let nature run its course. Im sorry for my silly worries, as far as I know the pregnancy is developing normal, so I feel very guilty for moaning and worrying in the way I am.

[kizzibear]

yez your very right Lunaticfringe. It sounds silly, but the realisation that I am going to become a mum has just dawned on me. Now that the last few weeks are here, its got me over thinking on everything! I know once baby is here, I will continue to worry about her,but at the moment I feel helpless to a ertain extent, as I just have to let nature run its course. Im sorry for my silly worries, as far as I know the pregnancy is developing normal, so I feel very guilty for moaning and worrying in the way I am.

[sh77]

It is highly likely that your baby will be fine but, yes, there is a small risk that something could go wrong. My first preg was straightforward but ended with very devastating (and v rare) consequences. There was nothing to suggest that my baby would pass away. I had 2 MCs after that.

I have absolutely amazing ante-natal care this time. Despite that, I know that something could still could wrong (same problem or something totally different) and there is bugger all that I or the best consultants on the planet can do. So, I try hard not to worry as it is a waste of my energy, and be happy for each day I get through.

It is pointless me saying to you "don't worry" but try to put things into perspective.

[sh77]

Uhhm what "new and rare things" have I given her to worry about? My point is simply that with the best will in the world, nobody can be guaranteed a risk free pregnancy or outcome. I used my experience to illustrate that. That's all.

[saintlydamemrsturnip]

Are you focussing on DS because it can be tested for?

I had a very low risk for DS with my first pregnancy. My son is severely autistic and will never live independently. His risk of that was something like 1 in 100 (as is everyone's without prior history in the family). His siblings (who are both fine) had a very very high risk of autism (on account of having a brother with the condition).

You could have an amnio (although that brings its own risks and therefore fears) but you might be better putting into perspective the fear if you can. I assumed once ds1 was born that any worries I had had during pregnancy would go, in fact his birth was the just the start of the worries. I remember when he was a day old and my Dad saying 'ah now the worrying begins' and he was right. Worry is part of being a parent you just have to learn how to manage it really or it can become paralysing (which is no good for anyone).

[sh77]

Oh I'm sorry for repeating YOUR point with my own example. I hadn't realised there were such stringent rules in place. The nature of the forum is that people will share their experiences. You behaving like the thought police is not very helpful. Apologies to original poster. I don't wish to hijack this forum.

[saintlydamemrsturnip]

Well now I've given my example. Personally I think it can help give some perspective if different people give their own examples. Especially when it's a fear without a particular reason. Also shows there's no point worrying. It's the things you don't worry about that come and get you ime!

[saintlydamemrsturnip]

Why? I find that knowing that shit happens to lots of people makes it easier to put worries into perspective. Especially when the worry is something very unlikely to happen (given the screening results). It's worth asking why there's the fear (presumably because the screen's reliability has been called into question following the discovery that it didn't pick up a case the OP knew personally).


TBH since entering the SN world and meeting lots of people with children with all sorts of problems - some very severe indeed- I've worried a lot less about everything to do with my kids. For me that perspective helps. And in my case knowing that ds2 and ds3 were at a high risk of autism helped me not worry about/focus on DS during their pregnancies (as I said before both were fine anyway). I think there can be a tendency to focus on it because it can be tested for. But it's nearly always a pointless worry.

We can all pick on anything to worry about endlessly during pregnancy - I'm sure everyone has moments of panic. For me I always found putting into a wider perspective helped let go of any specific individual concerns.

Being a parent is always going to involve worrying at some level though - that's entirely normal. It's just managing those fears and not letting them run away.

[witlesssarah]

Hi kizzibear sorry you're worried, MC just takes away that innocence doesn't it. You know that bad things can happen randomly and so you worry that it could again. I've just been talking it through today with a consultant. I'm in a high risk group because of my age (nearly 45) so I'm 1:10 risk for background - its like there being a room with 10 people in it that you have to go through to get a prize - but one of you is going to get kicked in the teeth instead of getting the prize. It depends on the prize and how you feel about being kicked in the teeth whether you'll go into the room.

Now you are in Wembley stadium, and one person will get kicked in the teeth and all the others are going to get the prize (yes, further risks ensue in life but you get my point for this risk). It could be you, but try not to worry.

Good luck and hope you can enjoy the last few weeks

[kizzibear]

Thankyou for all your replys,and taking time to answer. I kind of assumed I was 'safe' from any abnormalities etc, due to scans being fine and risks being low, but I can see I was wrong in doing so. I think after previous loss, I still find it hard to belive that I am in the final countdown, and that I couldnt possibly have a healthy baby. As I have said already Im being silly with my worries and I should look forward to her arrival, but at the moment I am finding that difficult.

[saintlydamemrsturnip]

good luck kizzi. The vast majority are of course absolutely fine, but you will hear horror story after horror story now. Actually you won't, you will hear the same ones you always have - you will just notice them and remember them and think about them in a way you never used to.

When you become a mother there is no time that worry disappears, worries about DS will just be replaced with other worries. It really is part of normal motherhood and its something you just have to find a way to live with really (or it can become hideous).

it's really all about perspective and finding a way to keep those worries in check.

[vmcd28]

I have a 5.5yr old ds and am 33 weeks with ds2, after two miscarriages last year. I was given high risk for Downs - 1:148. Scans since then have reduced that risk, as there are no markers for Downs. I stopped worrying about it, really, but now that I'm getting closer to the due date, I am starting to consider it all again.
I can therefore totally relate to this feeling of worry, and "why SHOULD this baby be ok?" rather than in my first pg, it didnt even cross my mind that anything might be wrong!!

The internet is an evil place when you dont want to know the horror stories, and it's a wonderful place when you need support.

The point is, most of us have horror stories to some extent, whether it's about pregnancy/health/family/whatever, but just because we know about them, doesnt mean you're at a higher risk of it happening to you.

You will feel worried, but try to keep it all in perspective. Once the baby's here, you have GOT to try to relax, so start now!

[warthog]

if you take 35000 babies, one of them will be down's syndrome.

it's a statistic. your baby could be that 1:35000 but more likely not. just like the lottery.

i'm 1:200 and not particularly worried, if that's any consolation.