High risk Down's....amnio....your experiences please.

[bramblina]

I have been given a 1:109 chance of baby having Down's Syndrome. We have decided to have the amnio, probably on Monday. I have 2 children and have had 5 miscarriages......my head is spinning.
If you have anything to tell me then please do.....just anything.

[xkcdfangirl]

Thoughts with you. No extra info to give you but just wanted to give you some response. As I'm sure you have already been told by the professionals, the overwhelming likelihood is that the amnio test will go smoothly (99% probability) and will show that everything is fine (99% probability). It's not worth stressing too much, at this stage, about the small possibilities that this is not the case - it's a sensible precaution to take the test. Breathe deeply and try not to stress.

[WipsGlitter]

I have a child with downs syndrome. It's not the end of the world! What are you going to do if it's confirmed?

[bramblina]

No it's not the end of the world. I am far from critiscising (sp) anyone's decision to have a baby with down's, or by having a child with down's. It's not about having a "perfect" baby, it's about the implications on my family as a whole- and by chosing to have a 3rd baby that was a massive deciding factor. I wouldn't have considered an amnio with my first 2 children but this is No.3, a whole different ball game.

I don't know what I will do.....the whole point of this thread.

How many other children did you have before you had your child with down's? I have 2 small children to consider as their lives would be affected. I also have a self employed husband who I will need to rely on more but our time is limited- he works abroad in an industry which is really suffering right now. I live in a remote area without any family close by. My mother is disabled. I may have another miscarriage but have already had 5.

I am asking for experiences of amnio because I am scared, that's all. I don't want this to turn in to a debate about having a child with down's syndrome. I want to gather information to make an informed decision.

Thanks, xkcd, that's reassuring info which I didn't know. I will keep reminding myself.

[Minstrelsaremarvellous]

Hi - I hope you're ok and I understand how difficult this is for you. We had screening and got a 1:62 risk of Downs and we decided to go for the amnio diagnostic test. They wait before the test was hard. The test itself was a breeze. The consultant and midwife were brilliant. The needle feels like pressure rather than pain. I then sat on my bum for 3 days and didn't move. (with a 3yr old this was challenging but DP stepped up brilliantly). The wait afterwards for the results was AGONY. Without doubt the worst bit was waiting. We got the all clear btw. Prepare yourself for the agonising wait.
Big hug to you all

[WipsGlitter]

I was trying to help, reassure you that all these "fears" you are having may not be as bad as you think. That is information to help you make an informed decision. So on your weighing up where you have all the negatives you can balance them with a few positives.

I have one other child, we didn't know DS2 had downs until he was born, so the "choice" was made for me. I don't currently work, but did through DS2's second year, we used a daycare - they were fab. We don't chose to have our life dominated by loads of DS stuff, don't go to groups etc - but our son has no other health problems.

I'm not trying to turn this into a debate, I can totally understand your fears, I didn't "want" a child with downs, it was the cards I was dealt. I can understand that if you are going down the testing route (Obv we didn't) that you will be in a different position.

[bramblina]

Gosh I'm sorry. I sounded very harsh and rude there. In my defence I thought you possibly felt a little criticised for having a child with down's and that's not how I feel, I am just scared that for me to have a child in that situation now will not be something I can cope with. There again I don't want it to seem like I wouldn't accept the situation. With my first 2 I wouldn't have had the amnio because I would have taken my chances- I know this because it was something we had discussed. But this time it's not just about me, or us, it's about all 4 of us.
There is a girl with down's of about 15 who lives close to us and because of this I am not making our situation common knowledge. It's dreadful to think if the result is positive I might not be able to go through with the pregnancy.
I'm not sure I'm making any sense now. I am just trying to think it all through so when it comes to the day of the test I will be at ease with it and be able to get on with it OK. And not sob for hours on end.
Please don't be offended, I'm just petrified.
Minstrels thank you I don't think I had thought of much other than the test itself and the results. These are the things I need to consider.

[starmaker7]

Hi when I was pg with my dd2 (i had 3 other children too) I had a 1:36 result ,I went for an amnio and they did a (new at the time) test called FISH which gives faster results for other syndromes that can cause high results. 3 days later i got clear results for Turners and another (forget which one) but 7 days later I got a call back and had to go in ,something was not right,they didnt know what it was and they needed blood from myself and dp.
It turned out that DP has a translocation of chromosomes and so does dd2 ,this threw up the high result apparently we were only the 2nd family in 30 years that my consultant had come across with this ,the other was affacted severely ,my dd is fine well as fine as she can be with dodgy German genetics (its a standing joke in our family ;0) ) and non of our others have been tested for it as it is a mild translocation (there are variations ). At the time if she had had Downs I was poised for termination ,however by the time I was pg with dd3 I didnt have any tests as I had met the most wonderful Downs boy who was the same age as my dd2 (my friend adopted him) and he totally changed my view .

[starmaker7]

also when I had my ds1 i had a high result which was down to the midwife writing 11+ weeks and the consultant reading it as 14 weeks ,that was another fraught time for me until they realised the error!!

[TheHonMrsP]

I had a 1:3 chance (gulp) and an all clear after an amnio. I had decided I would carry on regardless, but DH wanted an amnio to 'know'.

We already had 1 DD.

It was a very stressful time that I don't really want to think about - a bit like it happened to someone else really. DH was very anti having a child with known problems. I have always been very pro choice (and still am) but when it came to it, I wouldn't have terminated. I don't know where that would have left me and DH. Very lucky I didn't have to find out.

The amnio itself was not painful. A bit uncomfortable, but more mentally, iykwim? I spent 2 dyas in bed afterwards. Results came back really quickly. Midwife rand at 8pm on Friday eve so we didn't have to wait the weekend out.

All the best whatever you decide. My 1:3 is perfect and sleeping the night away.

THMP xx

[bramblina]

Thanks everyone.

I get the feeling it's not as painful as I was lead to believe so surely will be fine. I did labour on gas and air so really can't wimp out!

It's going to be at least a week from today before I get the results so am just going to have to grin and bear it.

So lovely to hear such positive stories, thank you all so much xx

[minipie]

Hi bramblina just another experience for you. I didn't have amnio but had CVS which is very similar.

We had a 1:104 Downs risk (so very similar to yours). A private scan also gave us a 1:42 risk of Edwards and Patau syndromes which are incompatible with life. That's what decided us on the CVS really though probably would have done it anyway.

I guess my point is, the CVS/amnio is not just testing for Downs but also for more life threatening (but rarer) conditions.

Anyway, the CVS was really not very painful. The doctor cleaned my abdomen, then I felt a sharp jab when the needle first went in. Just enough to make me go "ouch!" but that's all. My hospital doesn't use anaesthetic but some places do, so you may hear some people say they felt nothing. Then he sort of "pumped" the needle in and out for a bit to get the sample, which I could feel but it didn't hurt at all. Didn't feel the needle coming out.

I watched the whole thing on the ultrasound which he was using to make sure the needle didn't hit the foetus. I could see our little bean moving the whole time, before during and after the procedure, and he also showed us the heartbeat afterwards.

I did not have any cramping, and just a little brown bleeding (but had some of that before the CVS so it may not have been caused by the CVS anyway). Heard the bean's heartbeat yesterday so clearly no miscarriage.

Our results for Downs Edwards and Patau were all clear, I had the test on a Friday got the results on Tuesday lunchtime.

If your amnio is on Monday I would have thought you would get the "quick" results (i.e. Downs Edwards Patau) by next Thursday.

Best of luck, it's an anxious time but the vast vast majority turn out absolutely fine.

[manitz]

hi there. i had cvs and my baby was found to have downs syndrome. I had already decided to terminate before finding out hte diagnosis as the baby had hydrops which means the heart has gone into arrest.

You need to rest following a cvs/amnio, the pain of the needle is not awful but they will look at a scan of the baby to find the right place to put it in. you may prefer not to see this - i asked to have the monitor turned away from me.

I found the downs association website very useful and uplifting but ultimately we did terminate the pregnancy for a variety of reasons. I hope Monday is not too traumatic for you. x

[bramblina]

Oh dear thank you both for your stories, minipie good to hear but manitz I'm so sorry, how traumatic.

I went to visit a friend today who had an amnio and now has a 5 year old, I do feel more at ease now and at peace with the whole situation. Also had a chat with my mw who is very supportive.

I just struggle with things like this so am very grateful for your stories, it is helpful. xx

[BigBirdsFriend]

bramblina firstly you are amongst friends here. Results like yours are very common, there are lots of us who go through these tests and I am yet to meet anyone who did miscarry from the procedure.

our dd had 1:1 chance of downs and 1:42 Edwards, we had a CVS which was as described above but didnt hurt and they took great care of both of us, dh watched I was checking the monitor and they were so very careful to keep the needle as far as possible from dd. I have 3 friends who had amnios, they were fine after the procedure.
We were at Kings at the fetal health centre, they were amazing and the 20 weeks scan we had to double check for any anomalies that may have thrown up the scary scores at 12 weeks were incredibly detailed. we had good follow up care too, just to make sure how we were doing. it was very caring

I had paracetamol afterwards and took to bed until I got the results, tbh I was very scared about miscarrying - it took us 8 years to concieve and all the palaver that went with that process and didnt deal with it all well. but didnt feel pain, didnt bleed and just shut down and slept a lot!

dd is fine, a typically bonkers, lively and intelligent challenging 2.5 year old now. we had decided that we would not terminate for Downs, but would for edwards as she would not have had any quality of life if she even made it through birth.

I think that the technology, care and treatment has moved on enormously in the last few years, these tests present far less risk than they used to.

please keep us posted, MN is a good support network, it looked after me and we will look after you

[bramblina]

Thanks so much, bigbird. OMG doesn't a 1:1 chance mean she WILL have down's? Incredible. And such a shock to deal with too.
I am hearing more and more stories about the procedure being successful (ie no mc) wich is very reassuring. I must start jotting down questions for when I arrive or I'll forget everything.
Thank you for your kind words which mean a lot :-)

[daisymama]

I had a 1:4 chance of downs with #4, was devastated as I thought what had I done to the other children, all sorts of emotions, had the CVS, then got on a ferry to go on a planned holiday so no rest for me. Nurse phoned to say no downs and we were having a girl, however at the time (2004) they did not tell me that they cannot screen out everything, we thought everything was fine and carried on until 20 weeks when scan showed polyhydroamnios, I was hospitalised at 28 weeks and had amnioreduction, dd born prem at 33 weeks - she has a very rare genetic syndrome but is the piece that has made our family complete however downs would be a walk in the park compared to her probs, however we chose to go for #4 and this is how it is.This is a blog post I wrote about my fears for our other children growing up with a disabled sibling www.suburbansuperwoman.blogspot.co.uk/2012/05/this-be-verse.html. My story is very very rare and unusual but I just wanted to let you know that whatever the outcome it does work out OK in the end - actually compared to me your odds are really good, I nearly fell off the bed when the doc announced 1:4! Good luck & feel free to get in touch if you want to chat x

[plasticsurfer]

HI there, I had a 1:55 and had an amino, not the best experience but use it as an excuse to rest legs up and relax afterwards! My ds is 5 this year and is a healthy, happy little boy, risk ratios are just that, downs wouldnt have been the worst thing for us I just wanted to know. Best of luck, try not to worry and relax afterwards!

[Tobermory]

Daisymama, I've just read some of your blog. I hope that's not impolite of me as you included it in your post to BRamblina but I just wanted to say how what you wrote moved me. Your descriptions of life when daisy was first born through to now, your focus on providing the care, at home, that your little girl needs and how you juggle famly life; you sound like the most amazing woman. So positive and a lot more eloquent than me!

Bramblina, sorry for high-jacking your thread I hope you get the results you want for you and your family.

[bramblina]

Just popping in to say I'm still here but can't chat....will be back next week. Tobermory, no probs at all, everyne is just so kind xx

[bramblina]

Had the amnio yesterday....ouch there was a blockage in the tube and the lady couldn't get the fluid out for ages, and until after much poking around. Then there was a problem with one of the taps......eurghhh. The midwife and consultant couldn't have been nicer and dh was a gem, though poor pet nearly fainted, not like him and I did feel very sorry for him! A big hairy trucker who is actually quite sensitive but it made for a good distraction for me...!

Anyway, the heart is fine, and the fluid is clear so all looking good so far. I had no cramping yesterday and just the tiniest feeling of something today so hopefully that will be it.

I'm just absolutely dreading the call, I really am. I have asked the lady to call last thing on Thursday. DH left tonight for Europe so it's just me and the dcs.

Nice to know you are all there. A little bit to be acting like I'm the only one it's ever happened to though! I know I'm not. It's just a wierd thing, life

[jdutch]

Just to say I'm playing the waiting game too. I was given 1:4 of DS and had a cvs yesterday. This is my 3rd baby so also worried about the impact having a DS baby will have on my girls. I know how you feel and what you're going through. This is the hardest thing I've ever been through. Hope you get good news x

[jeunemaman]

Dear bramblina,
I just wanted to write to let you know can completely empathise with this 'waiting game' you are experiencing as I was given pretty much the same statistics as you 2 years ago before the birth of ds (1:110). Those few days after the amino and before the call were probably the most stressful time of my life. Like you I had no idea of how I would handle the result I just wanted to know what we may be dealing with. The call came 3 days after the amino to say all was fine and the relief was overwhelming. My DH is wonderful in every way but could just not understand why I was so distraught waiting as the odds were so much in favour of the test showing no abnormalities - at this point his usually reassuring pragmatism annoyed the hell out of me. Anyway I wish you well and hope that everything works out for you.

[TodaysAGoodDay]

I was given a 1:33 chance of having a baby with downs. I was 36 at the time and my now ex husband was 48. We decided that it would be very hard to be old parents with a child with problems, so we decided to have amnio. If it had been positive I would have had a termination. Turns out DS was fine and is now a happy healthy 5 yr old.
Why are you having this done? It obviously matters to you but if you are planning on keeping the baby anyway, why put yourself through the worry? You will need to rest for a couple of days afterwards. This is VERY important if you are to reduce the chance of a miscarriage. Good luck, I will think of you on Monday.

[bramblina]

Hi,
The lovely lady from the hospital called today to give me my results......all clear. None of the syndromes show. I'm so relieved, I didn't want to be faced with the dreadful decision of what to do, and as I said it's about all 4 of us now not just me and dh. However I'm now worried about the risk of miscarriage but fortunately since the hospital began to keep records 3 years ago they have had no miscarriages caused by the amnio, they do around 60 a year.
TodaysAGoodDay my amnio was this Monday past, this thread is a week old but thank you for your kind thoughts and story of experience.
Jeunemaman we were similar odds then, and yet when I read someone else's version I think, 1:110 is very slim, but being in that position? You only have to be that 1 woman in the 110 for it to be against you. It's hard, isn't it? The waiting was OK for me, I got my blood screening results back last Monday and it was a week before I had the amnio but what I was dreading was the call, I just didn't want it.
Jdutch, I got the best news and now I'm relieved, I'm pretty sure you will too! It's very easy to be positive when things are going OK! I'm hopeful for you. 1:4 isn't great but you have 3x more chance of not having downs so you'll be fine when do you think you will get your results? Please let us know....?

Thank you all so much for your wonderful support, each one of you. I'm very greatful, it made the whole process so much easier, thank you thank you thank you xxxx

[TupperwareTwat]

I'm glad the stress of the test is over for you now, op.

My mum had amniocentesis when pregnant with my youngest sister. Dsis is now a beautiful, healthy, intelligent 16-year-old.

I refused the triple blood test when expecting my 3rd DC as I wanted to save myself the stress of being found to be high risk and I knew I definitely didn't want amniocentesis as I believed the risk of miscarriage was too high.

DS3 is perfect. As a parent though, you will always worry about your children even if you do exclude Down's!