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.

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.

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.

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?

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

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

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

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.

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.

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.

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.

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!

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

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.

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...

oh thank you itsahardknocklife Good name btw

thanks

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.

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?

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.

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.

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.

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.

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.

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.

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

I have appt for amnio on weds so presume its the quick as they said shoulf get results 48hrs and rest in 2 weeks.
Sassafrass - thank you, very encouraging. Its just such a worry waiting for results. Midwife coming this afty now.

jeanjeannie- that was good news for you then with a high risk. Good to know that there are many false positives although its stressful as not nice to go through not knowing. Would be nice to be able to have all info on a 12 week scan!

It sounds like you are considering termination if the baby has DS. Maybe talk it over with someone?

I was High risk for DS, decided against amnio, and was very worried for a couple of weeks.

However, once I had made the decision my confidence grew as the pg progressed and I went on to have a lovely pregnancy, best of the 3.

Don't know if that's much help, i suppose i'm trying to say your anxiety may not stay at this level throughout.

Thank you all for support. Still awaiting midwife then can try to relax tonight.

My nuchal result came back as 1 in 27, what concerned us more than anything was that the increased fold can be a sign of heart problems or other chromosonal problems which are not compatible with life.
We chose not to have further invasive tests as we knew whatever they revealed we would not terminate therefore the risk of miscarrying albeit small just wasn't one we wanted to take. We have however had further scans to keep a close eye on ds's heart, so far there are some soft markers showing on his heart which could be a sign he has down's syndrome but the main concern for us is that there are no major heart problems. We have a further scan in a week and a half to take another look at his heart and from this scan decisions about his delivery will be made.

Hope your midwife calls soon Jenwa, just talking it through made so much difference to me.
Good luck for the amnio.

hatrick, are you off to guys? hope it goes ok and no major problems show up

ups n downs

I have had knowledge of this site through someone at work with a relation who has a baby with DS.

I found it a good site, for info about what DS is, how i can impact on your life. Its a positive site.

In case you ever wish to read up more about DS

it not i

I had a 1:5 risk of DS, 1:17 of another chromosonal disorder. I had a CVS, everything came back normal.

CVS runs a slightly higher risk because at that stage of PG there is a higher risk of MC.

I was in blind panic and was so scared. I knew nothing of DS. I hadn't discovered MN in those days. But you have, and have some great support on here, so although I have nothing helpful to say, I do know what you are going through and wish you lots of love and luck, and leave you in the very good hands of Thomcat and all

Try to relax and don't panic

I meant that because the test can be carried out earlier in PG. Am rushing, sorry.

jenwa - I had one amnio & got result all ok but the next two times I didn't have an amnio as the worry of miscarriage was too much for me. I was pressured by my docs to have an amnio which was awful as they couldn't understand I didn't want one despite the blood test results. Everything was ok but I was very worried towards the end of pregnancies. Get lots of info & talk it through - do what you want to do xxx

I had a high risk result with DD I got 1 in 75 for downs. We didn't have an amnio as we felt we would not have a TOP for downs (we had a nuchal scan though at leeds which brought our risk down to 1 in 600) but it was very stressful not knowing. I sadly lost my DD at 20 wks as I later found out I have Hughes syndrome (blood disorder) but she did not have downs or any other chromosome condition. I also lost another DD at 23 weeks, this time the barts test came back 1 in 25,000. The scan showed she had fluid in her body which could be treated as long as the amnio was clear, sadly the first results were OK but 10 days later we were told DD had a severe and rare chromosome problem. they wouldn't do anything and the fluid would spread and put me at risk. I sadly had to be induced. i am not sure whether i will have the barts test again due to the stress. i think i would just go off a level 2 scan . Hope all is OK.

Hi all, I was high risk and decided against amino etc as thought even if results were 'bad' I had no plans to terminate so why risk the pregnancy just to know. Having said that, when my DD was born, noone was prepared to take a firm stance and say one way or the other what they thought. One person would say oh her eyes are a bit funny, the next would say, no her eyes are fine it's her neck that's not right, then the next would say no her neck is fine, it's her low-set ears, then it would be her protruding tongue etc etc. We were sent to have chromosome test the day after she was born and waited an agonising 2 weeks for the results. I knew in my heart she wasn't downs but was convinced some other chromosomal abnormality was discovered - thankfully, she is perfectly normal. Next time round, I won't do the test - for me, it's not worth the agony.

gosh thomcat - you have some seriously gorgeous children !

I had a 1 in 25 risk ofr DS with my last pregnancy. We decided not to have any further tests done. Baby was born without DS. Good luck with whatever you decide.

jellybeans - so sorry for your loses, you have had a very difficult time. I hope all goes well for you in future pregnancies.

midwife been and has been lovely to chat to her and get as much info as poss. She said with my risk they advice amnio but its up to me. Am having weds, consultant already booked me in which is great. Just a wait now.

foxythesnowfox-thankyou for your info.

Thank you all, you have all been lovely and supportive and given me lots to think about and hopefully whatever decision I make people will still be supportive.

If people aren't supportive if you keep your child, they are not friends imo.

I had a 1 in 7 risk after a Nuchal scan with blood biochemistry. He is now nine months old and all is well. My nuchal measurement actually put me at low risk but after the blood biochemistry results an extremely low PAPP-A reading bumped me up to 1 in 7.

What I found strange is how taken aback the midwifes were when I said I didn't want the amnio, thank you very much. They almost made me feel as if I was passing up on some treatment that was vital for ds's safety and wellbeing

April 6 years ago at a 20 week scan I was told my unborn child had a hypoplastic left heart. We were then referred to Harris Birthright trust for fetal cardiac scans. ON doing the scan we were told our daughter had a serious but operable heart defect that had a very successful outcome - unlike hypoplastic left heart - it did not mean lots of surgery.

At the time the fetal cardiologist also told us that if our child was born without down syndrome it would be incredibly rare. he then offered us an amnio to be done with Prof. Nic. We refused because for us it would not make a difference to the outcome. At this stage I was 22 weeks pregnant with a little girl and we knew she was part of our family.

Our eldest dd(1) was born under 6 years ago and yes she has down syndrome - which I felt would be the case and dh said he just knew dd1 had down syndrome. At 8 weeks old she underwent two open heart surgeries to close the holes in her heart. She is now a very happy healthy almost 6 yo.

We now have three daughters - and dd1 is as much a part of our family as the others. She has always been very easy to care for - in terms of day to day care was much easier than dd2 who is nt. Dd1 is idolised by dd2 who wants to be just like her. In turn dd1 adores her two sisters. She recently started full time school - the majority in mainstream with plans to transition to full time mainstream school. THere are pics on my profile. Funnily the kids at school love her - all want to sit with her and be her friend. Her two sisters have not missed out by having a sibling with special needs in any way.

In my experience of people across the spectrum in terms of ages and abilities - people with down syndrome are able to live independently - they do marry, they do work, they do very well in mainstream schools.

We then again at 20 week scan with dd2 learned that she had a higher chance of also having down syndrome. We chose not to have an amnio and dd2 was born without down syndrome.

In speaking with lots of women who have had various types of antenatal testing - I find it helpful to ask what they will do when they get the information - to think about what it is they want to know by having the test and what they will do next. Sounds a bit harsh but I have met so many people who went for all sorts of tests and then when given the results were finding it hard to make the next step - whatever that step may be. I think the medical profession likes to test often without regard for what happens when the results come back.

I also looked at it like this - I did not need to know bad enough to risk losing dd1 to a miscarriage from an amnio. For other women - that risk is less than the information or reassurance they need.

Sorry I just read more - is it just the blood tests or was it a nuchal fold test as well. From what I have read the blood tests alone are terrible inaccurate - but tied with a nuchal fold test and a scan for a nasal bone can be more accurate. Fwiw - a hig nuchal fold measurement can be indicative of a number of conditions.

I think there are still pics on my profile

yes pics on my profile - sorry for the long post.

eidsvold - thank you. Yes only had bloods done so amnio will give me a def result.

Will have a look at your pics.