Had a 1 in 20 risk of downs

[jenwa]

Can any one offer any advice. Got midwife coming this morning to talk to me. Been ooked for amneo weds. Am 32 with one dd. Had low risk with dd.

[Thomcat]

Hi Jenwa

What sort of advice are you looking for?
How are you feeling?

I had my first child when I was 30 - her name is Charlotte, she's 6 now. She has Down's syndrome.

Have a look at my profile for pics of her.

Ask anything you like.

[cupsoftea]

I've had this type of result - have there been any markers on any scans - the nose bone development and lenght of limbs also important is assessing the likelihood. The amnio will give the exact result though.

[jenwa]

Not sure really what advice, Need to speak to midwife. Just really wondered how accurate blood results are. have read lots about how they can be false positives. Just lots of info to absorb and difficult time.

Not had any scans for markers etc, do they do at same time as amnio?

[jenwa]

Thomcat, you also look like a young mum. Did you know prior to having Charlotte that she may have DS?

[jenwa]

cupsoftea - HAve you had your baby? and did you have amnio if you dont mindme asking?

[Thomcat]

Well I was low risk with DD1 and she was born with DS and high risk for DD2 and doesn't have DS.

An amnio or CVS will tell you for sure.

If that's what you decide you need to do - know for sure then that's what you need to do. Just bear in mind that there is a 1 - 2 % chance of losing the baby.

And also arm yourself with info on living with a child / someone who has Down's syndrome so you can make an informed decision about what you want to do.

I know this is a scary time for you at the moment, full of uncertainties etc, but - big picture moment - speaking as a mother to a child with Down's syndrome she's very far from scary. She's a fab, funny, sweet, stubborn, popular little 6 year old that brightens everyones day. It can be hard work sometimes, so can being mum to my other 2 girls. But it's never, ever scary

[mankymummy]

i had a 1 in 20 with my DS. Went on to have amnio which was a little uncomfortable but not massively. You can see the baby on the screen when they do it if you want to. I got the results back within an hour, but not sure if thats the case with every hospital.

The staff were brilliant. DS turned out not to have Downs (they also check for other genetic things but can't remember what it was).

i was 39 when i had DS so high risk.

i can understand you must be feeling aprehensive so just thought id add a different perspective to thomcat.

[cupsoftea]

I've had detailed scans that lasted about 45 mins to check for markers of downs & others. Talk it though with the midwife. For me the choice was to accept the risk of miscarriage & know absolutely if there was a problem or to not have the amnio and then have the worry.

[Thomcat]

Jenwa - I was put in low risk so didn't have any other tests. And glad I didn't. Best decision I ever made. Had an enjoyable pregnancy and although when she was born I had a big shock it took me a day of being numb and crying (grieving for the baby I thought I was having) - and then I started to fall in love with her and just got on with the job of being mum.

She's made our family closer, brings us huge joy and we are incredibly proud of her. She's also drives me insane with her stubborness. Would I change her - not on your nelly. She's perfect.

[Thomcat]

I think if you've been told you are high risk then the not knowing for sure and living with the uncertantity must be sooooo hard.

But then if you know you would never terminate this pregnancy, no matter what, then the amno or cvs may be something you don;'t want to go through or risk.

If you do go ahead with tests then just make sure you find out as much about DS as poss and speak to parents who have children with DS and thoughs that have terminated.

[jenwa]

Mankymummy -Thank you, I think I will have the amnio as it will clear my mind.

Thomcat, your dd looks lovely. I can imagine you have your hands full with 3 children! Thank you for your info.

cupofsoftea - will def have a good chat with m/w. Just wish I could get a result today! Such a wait to have to go through!

[Thomcat]

jenwa - I'm here if you want to talk at any stage ok.
Good luck, xx

[itsahardknocklife]

We weren't offered the scan where they give you a risk of your child having Downs, so the possibility was something we discussed. Our DS didn't have it though. With future children, however, we have decided not to have the scan as I think I would want the baby anyway. I think having the amnio is a good idea for you to clarify things, but I hope that seeing pictures of Thomcat's gorgeous family has helped.

[mankymummy]

i felt i had to have the amnio to prepare myself one way or the other.

If you are worried your baby may be downs then dont forget a 1 in 20 means there are 19 chances that its negative. I know someone who had a 1 in 6 and it turned out negative.

I also know a little girl with Downs and she is the most beautiful funny little girl.

Good luck, let us know how you get on...

[Thomcat]

oh thank you itsahardknocklife Good name btw

[itsahardknocklife]

thanks

[bramblebooks]

I had a high risk blood test with ds2. I went in to have an amnio but had persuaded the specialist to do a marker scan first. This was very encouraging, so I refused the scan. Ds2 was born with no problems. (Although how do we ever know what will happen with our children? He does now have diabetes , but that's a different issue).

My very good friend has a little girl with downs who is an absolute joy and delight. She's often round here to play and lights up my world. She didn't know until the birth that this would be so.

[NotABanana]

IMO it is all about what you can live with. How will you feel if you have the amnio and then miscarry a NT baby? If you do have the amnio and the baby does have DS then will you continue with the pregnancy?

[Sassafrass]

Jenwa, I was given a 1 in 30 risk after my triple blood test and dh and I went for an amnio as we felt we had to know for sure. The wait was hard but the actual procedure wasn't bad. I was incredibly nervous but it didn't hurt at all. There was an uncomfortable pulling sensation as the fluids were drawn out but that was it. I took the next two days off work and for about a week I'd get slight cramping whenever I walked fast or if I'd lift anything.

We got the quick result in 2 days and then the full result in another 2 weeks. Everything turned out clear for us.

My consultant told me that there are far more many false positives with the blood tests than with the nuchal scan. Remember, with a 1 in 20 risk you have 95% chance of everything being ok.

[itsahardknocklife]

At first, when I realised we weren't going to have the scan, I was cross, but I was on my own in Mothercare one day while I was pregnant and I saw a lady in there with her daughter. Her baby was a few months old and had Downs. The ladies in the shop were cooing over her, just as they would with any child, and she was as gorgeous as any baby at that age. Seeing that made me realise that it didn't matter to me and I stopped being cross about the scan and concentrated on my baby instead.

[Thomcat]

Exactly Bramble. Down's syndrome is so easy to detect. But just becasue your child doesn't have DS there are no guarantees in life. My sister has the most awful OCD, doesn't really leave the house, hasn't ever worked, no friends, no boyfriends, no life. I'd take DS over that kind of OCD. My friends young brother dies of a heroin overdose. Think I'd take DS over that too.

[Thomcat]

Babies with DS are just that - babies, like any other, they just happen to have DS.

My DD is in a mainstream school, is easily the most popular girl in the school, never mind the class. That's the only thing that makes her stand out - how everyone wants to be around her! The year 6 boys all know her name and shout out hello. At the school fair the other day she was like the pied piper! She's great. She also just happens to have DS.

It really isn't that big a deal.

This is just conversational and not aimed at anyone or meant to sway a decision.

Just sparked off itsahardknocklife's last post.

[staranise]

I had a false positive from the triple test with my DD1. I had an amnio, which was v stressful though the procedure itself was fine - very quick, pain-free etc. The risk of miscarriage changes from hospital to hospital, and from doctor to doctor, depending on how practiced they are (I was given a rate of 1 in 200 of poss. miscarriage). We opted for the Amnio-PCR test, which meant I got the results back within 24-48 hours, instead of having to wait 2-3 weeks. It's not available on the NHS but most hospitals provide it privately and it costs about £100-150 I think.

Best of luck, I found it all horrendously stressful and have refused the triple test in subsequent pregnancies.

[Sassafrass]

Some NHS hospitals will give you teh quick test free if you're higher risk than 1 in 50 I believe so it's something to ask about.

[jeanjeannie]

Just to say that I had CVS after a 1 in 2 chance (horrendous blood test results) and I'm 42. All came back clear...turns out that bloods can give odd readings - especially if you've had any bleeding - which i'd had. But we did take a while to decide if it was all worth the risk of the CVS - but with the odds that high we felt we needed to know.

We had the bloods with the nuchal scan - think our hospital has abandoned the triple test as too many false positives.

Best of luck - i too found it terribly emotional and stressful x