Down Syndrome risk 1:5 - I really need some positive experiences

[Mum22GTTC]

mine was 1:146 and im 33 and both 2 previous pregs were way in double thousands..im a worrying wreck but have a datailed scan weds to check for any defects and we will go from there..just triple test i have had at 15weeks..i am so hoping all is great at scan and if so will have amnio at 32weeks just for my peace of mind before baby born..
emma

Good luck hun! I think the scan will be a great help to you. I can't remember the exact statistics, but the triple test is something like only 60% reliable in giving accurate high risks. So there is something like a 40% chance that your result is bascially not worth the paper it's written on.

I'm having to pay this time for the NT scan with bloods at 11weeks and 5 days - that is supossed to be more like 90-95% accurate. They do not offer it on the NHS where I live and my midwife advised me to do that, rather than wait until 15+weeks for the triple test.

I was never offered any kind of detailed scan to check for markers after my high results before, only the amnio. If I get high risk this time I've certainly got a lot more questions to be asking!

This pregnancy has been so different compared to my others & I've convinced myself I'm expecting twins, but then part of me is wondering (if I've gone mad!!) am I feeling different because something's not right. Wish I could hibernate for the next few weeks until I know for sure what's happening inside there!

Good luck, let me know how your scan goes?

 

[mordino]

i really feel for you mordino..i am high risk for ds and i have put myself through hell the last 3weeks i am hiding pregnancy and wont take tags off maternity clothes and they are still in wardrobe waiting to be worn..not enjoying this at all....i have opted out of amnio at this stage and will be having a detailed scan weds to check heart e.t.c have you had your anomly scan yet? and if you dont mind me asking what were your scores?

Thanks Baileykenz.

Yes, I have had my anomaly scan last week and everything appear normal with the baby but I have another scan in a couple of weeks to look at the heart because of the baby's position. It was moving a lot which made it difficult for the sonographer to have a proper look at the baby's heart. But everything else looked fine. My NT for this pregnancy was 2mm and the baby's nasal bone was visible. My combined blood test result showed a high risk of Downs of 1:140. We decided not to go for a CVS this time because of the NT scan.

The NT in my second pregnancy was 11mm - very high! So we were booked for a CVS immediately. With my first baby, I had triple blood test at 16 weeks which showed a high risk of 1:79, I had already seen my baby at 12 weeks scan (NT ultrasounds hadn't been introduced at the time) so we refused amnio.

I am just hoping that all is well with this pregnancy!

 

[khegidio]

Congrats to you Kessutrip. It feels wonderful to get your results back and know that you can look forward to a seemingly healthy baby!

 

[whyme]

Yay Kessutrip - so happy for you!! I just had a feeling that all would be ok- know that's easy as I wasn't the one going through it, you poor thing.

Now you can really enjoy the rest of your pregnancy, show off your bump and look forward to the birth of your beautiful baby girl! It will be sleepless nights and nappies before you know it!! BUT is soo worth it for all the joy she will bring. Take care xxx

 

[jenjen100]

Hi kessutrip

Congratulations on your great result. This is the first time I've posted on baby and bump for a while.
At least you can start to enjoy your pregnancy now.

I'm going through something similar at the moment and the waiting is driving me insane.

Had a nuchal scan with a measurement of 6mm 3 weeks ago. Bloods came back and put the combined risk of downs at 1 in 5. All my excitement disappeared there an then, and the tears began.
I was booked in for CVS and had that done just over 2 weeks ago. Got the first set of results back and all clear for downs, edwards and patau syndrome which was some relief. I'm now waiting for the final set of chromosone results back and then on to the next step.
The hospital confirmed that because of the nuchal measuring 6mm, this is really big and generally means there's only a 30% chance the baby woud be OK. (The 1 in 5 statistic I could manage as the odds are in our favour, but this 30% statistic has just stuck in my head)
50% of the problems would be chromosonal so I'm hoping that once I have the full CVS results back then I'm back with the 1 in 5 chance of a heart problem. (4 in 5 it's not....GOT TO TRY TO THINK POSITIVELY)
I kept calling the hopital asking questions as I was so worried and they have managed to fit me in for a heart scan at 16 weeks instead of the 18 weeks appoinment I had booked for me)

Since the nuchal scan, I have spent the last 3 weeks searching for some positive stories, but in my searching have found a lot of sad ones too :0(
I suppose it helps prepare me for the worst. No point getting hopes up...it's just further to fall. Good luck to anyone else having these tests...I just wanted to post my story here...and hopefully it will turn into a story of hope too. (Sorry it's a bit long winded!)
xxxxxxxxx

 

[RubyRainbows]

Sorry to jump in -- Just wanted to share that i had been given a 1:17 chance when i was preggo with my son! I opted NOT to have the amnio. The blood test has a high rate of false positives. Unfortunately, the results had cast a shadow over my whole pregnancy -- i was a nervous wreck & cried everytime i thought about it! I had alot of level II U/S's with a specialist. Never had any markers. I did not know until my son was born if he had DS ---- And HE DOES NOT! All those months of needless worry!

Good luck girls -- hope you all have happy endings as well!

 

[miamia34]

Hi i have just found this site. I am 16 n half weeks pregnant with baby number 3, had triple screening test last tuesday and hospital rang me yesterday to say spina bifida test was fine but im high risk for downs test its come back 1 in 80. Havent stopped crying as my 1st child was 1 in 864 and 2nd 1 in 389 so this has come as a big shock i know im older as 34 now has this got something to do with it. What with moving house next week also i at my wits end. Can anyone advise any personal experience on this?? maria

 

[Mum22GTTC]

Hi i have just found this site. I am 16 n half weeks pregnant with baby number 3, had triple screening test last tuesday and hospital rang me yesterday to say spina bifida test was fine but im high risk for downs test its come back 1 in 80. Havent stopped crying as my 1st child was 1 in 864 and 2nd 1 in 389 so this has come as a big shock i know im older as 34 now has this got something to do with it. What with moving house next week also i at my wits end. Can anyone advise any personal experience on this?? maria

Hi, I'm sorry to hear that, please, please try not to worry.

I can tell you that I had 2 high risk pregnancies (1 in 20 and a 1 in 100) - results from the triple test and both of my babies were absolutely fine. I had amnios with both of them, obviously that's a presonal choice as to whether you have an amnio.

The triple test is really unreliable and I would always strongly advise ladies not to have it - it is only 60% reliable at giving a true high risk result.

I know it's too late for you now, BUT after having 2 high risk results from the triple test, I was told to expect the same this time (something to do with my blood & tests). So this time I opted for the NT scan with bloods & my results have come back with a risk of 1 in 21993! If I'd have had the triple test, I would have been likely to get high risk results again.

I really hope that reassures you, I'm very sure your baby will be perfectly healthy

 

[miamia34]

Hi i have just found this site. I am 16 n half weeks pregnant with baby number 3, had triple screening test last tuesday and hospital rang me yesterday to say spina bifida test was fine but im high risk for downs test its come back 1 in 80. Havent stopped crying as my 1st child was 1 in 864 and 2nd 1 in 389 so this has come as a big shock i know im older as 34 now has this got something to do with it. What with moving house next week also i at my wits end. Can anyone advise any personal experience on this?? maria

Hi, I'm sorry to hear that, please, please try not to worry.

I can tell you that I had 2 high risk pregnancies (1 in 20 and a 1 in 100) - results from the triple test and both of my babies were absolutely fine. I had amnios with both of them, obviously that's a presonal choice as to whether you have an amnio.

The triple test is really unreliable and I would always strongly advise ladies not to have it - it is only 60% reliable at giving a true high risk result.

I know it's too late for you now, BUT after having 2 high risk results from the triple test, I was told to expect the same this time (something to do with my blood & tests). So this time I opted for the NT scan with bloods & my results have come back with a risk of 1 in 21993! If I'd have had the triple test, I would have been likely to get high risk results again.

I really hope that reassures you, I'm very sure your baby will be perfectly healthy

Thank-u so much for your kind words of support, i am going to have the amnio as me and my partner need to know, am just awaiting the call and hopefully it will be friday although dreading it. If we werent moving i probably would of paid for that test but just couldnt afford it with moving aswell.
Im very pleased that you havnt got the worry this time round must be such a relief for youx

 

[Mum22GTTC]

Hi i have just found this site. I am 16 n half weeks pregnant with baby number 3, had triple screening test last tuesday and hospital rang me yesterday to say spina bifida test was fine but im high risk for downs test its come back 1 in 80. Havent stopped crying as my 1st child was 1 in 864 and 2nd 1 in 389 so this has come as a big shock i know im older as 34 now has this got something to do with it. What with moving house next week also i at my wits end. Can anyone advise any personal experience on this?? maria

Hi, I'm sorry to hear that, please, please try not to worry.

I can tell you that I had 2 high risk pregnancies (1 in 20 and a 1 in 100) - results from the triple test and both of my babies were absolutely fine. I had amnios with both of them, obviously that's a presonal choice as to whether you have an amnio.

The triple test is really unreliable and I would always strongly advise ladies not to have it - it is only 60% reliable at giving a true high risk result.

I know it's too late for you now, BUT after having 2 high risk results from the triple test, I was told to expect the same this time (something to do with my blood & tests). So this time I opted for the NT scan with bloods & my results have come back with a risk of 1 in 21993! If I'd have had the triple test, I would have been likely to get high risk results again.

I really hope that reassures you, I'm very sure your baby will be perfectly healthy

Thank-u so much for your kind words of support, i am going to have the amnio as me and my partner need to know, am just awaiting the call and hopefully it will be friday although dreading it. If we werent moving i probably would of paid for that test but just couldnt afford it with moving aswell.
Im very pleased that you havnt got the worry this time round must be such a relief for youx

Good luck for today! It's shocking that in some parts of the UK the NT scan is done on the NHS, but that's another story! Please let me know how you get on. Try not worry

 

[miamia34]

Hi i have just found this site. I am 16 n half weeks pregnant with baby number 3, had triple screening test last tuesday and hospital rang me yesterday to say spina bifida test was fine but im high risk for downs test its come back 1 in 80. Havent stopped crying as my 1st child was 1 in 864 and 2nd 1 in 389 so this has come as a big shock i know im older as 34 now has this got something to do with it. What with moving house next week also i at my wits end. Can anyone advise any personal experience on this?? maria

Hi, I'm sorry to hear that, please, please try not to worry.

I can tell you that I had 2 high risk pregnancies (1 in 20 and a 1 in 100) - results from the triple test and both of my babies were absolutely fine. I had amnios with both of them, obviously that's a presonal choice as to whether you have an amnio.

The triple test is really unreliable and I would always strongly advise ladies not to have it - it is only 60% reliable at giving a true high risk result.

I know it's too late for you now, BUT after having 2 high risk results from the triple test, I was told to expect the same this time (something to do with my blood & tests). So this time I opted for the NT scan with bloods & my results have come back with a risk of 1 in 21993! If I'd have had the triple test, I would have been likely to get high risk results again.

I really hope that reassures you, I'm very sure your baby will be perfectly healthy

Thank-u so much for your kind words of support, i am going to have the amnio as me and my partner need to know, am just awaiting the call and hopefully it will be friday although dreading it. If we werent moving i probably would of paid for that test but just couldnt afford it with moving aswell.
Im very pleased that you havnt got the worry this time round must be such a relief for youx

Good luck for today! It's shocking that in some parts of the UK the NT scan is done on the NHS, but that's another story! Please let me know how you get on. Try not worry

Hi i had the amnio yesterday (thursday) as hospital rang at 9am just wanted to get it over with. Not sure when i will get results yet as they said they managed to get 12ml of fluid and they like to have 15ml at least to get the rapid response in 3-4 working days so may have to wait untill 10-14 working days? Just a waiting game now really. Hope u r ok and all is wellxx

 

[miamia34]

Hi i have just found this site. I am 16 n half weeks pregnant with baby number 3, had triple screening test last tuesday and hospital rang me yesterday to say spina bifida test was fine but im high risk for downs test its come back 1 in 80. Havent stopped crying as my 1st child was 1 in 864 and 2nd 1 in 389 so this has come as a big shock i know im older as 34 now has this got something to do with it. What with moving house next week also i at my wits end. Can anyone advise any personal experience on this?? maria

Hi, I'm sorry to hear that, please, please try not to worry.

I can tell you that I had 2 high risk pregnancies (1 in 20 and a 1 in 100) - results from the triple test and both of my babies were absolutely fine. I had amnios with both of them, obviously that's a presonal choice as to whether you have an amnio.

The triple test is really unreliable and I would always strongly advise ladies not to have it - it is only 60% reliable at giving a true high risk result.

I know it's too late for you now, BUT after having 2 high risk results from the triple test, I was told to expect the same this time (something to do with my blood & tests). So this time I opted for the NT scan with bloods & my results have come back with a risk of 1 in 21993! If I'd have had the triple test, I would have been likely to get high risk results again.

I really hope that reassures you, I'm very sure your baby will be perfectly healthy

Thank-u so much for your kind words of support, i am going to have the amnio as me and my partner need to know, am just awaiting the call and hopefully it will be friday although dreading it. If we werent moving i probably would of paid for that test but just couldnt afford it with moving aswell.
Im very pleased that you havnt got the worry this time round must be such a relief for youx

Good luck for today! It's shocking that in some parts of the UK the NT scan is done on the NHS, but that's another story! Please let me know how you get on. Try not worry

Hi i had the amnio yesterday (thursday) as hospital rang at 9am just wanted to get it over with. Not sure when i will get results yet as they said they managed to get 12ml of fluid and they like to have 15ml at least to get the rapid response in 3-4 working days so may have to wait untill 10-14 working days? Just a waiting game now really. Hope u r ok and all is wellxx

Hi just to let u know am moving tomorrow and wont be on the internet until 25th may. Hospital rang yesterday and told me as there was blood in sample i cant have rapid result so will find out by next friday hopefully. will let know outcome wen im back online on 25th may

 

[Mum22GTTC]

Oh no, I really feel for you having to wait so long!
Good luck with the move, I guess on a positive note as least the move will keep your mind busy.
Keeping my fingers crossed for you, l'm certain next Friday you will be on here telling us everything is fine. Take care

 

[Sammy2009]

 

[lottie7]

Thinking of you.
xx

 

[sciencemum]

I hope everythings okay! I see it's the 25th may so hopefully you are going to return with good news. *fingers crossed*

 

[Ella_Mummy]

havent spoken to you before, but just wanted to say i hope everything turns out okay. Its the 25th today so hopefully you have some good news

 

[mumoffive]

I can't advise on the tests, all my results came back low risk and I didn't have any amino or similar because of that. However, despite being low risk, my third son does have Downs. He will be six next month.

Had I found out in my pregnancy, I may well have decided to terminate, as I would have thought I couldn't cope and it wouldn't be fair to my other children. I am so glad I didn't know until he was born. Of course, it was a shock, and of course, I wonderd how I would cope, but the reality is, havign a child with Downs is not much different to having one without Downs, in that he is my son just like my other two sons, and I love him just the same as I do them. It's really not the dreaded big deal society makes it out to be.

I am now pregnant with Twins and have declined any testing for Downs, simply because it doesn't matter to me one bit if either of these babies have Downs.

I am so glad i read your post. I was debating over tests and was worried about the impact on my other children. I never had any tests with my other children and i was in my late thirties. I am not 42 and feel hypocritical going to take tesst..and tbh, now sure i could go through with a termination looking at the beautiful children i have already. Your positive post has made me feel a lot better and reminds me of the attitude that i took with both of mine before. I think, like you, that i most likely wont have the test done. x

 

[shellybeano]

hi im new to this and i just wanted to say how supportive this site looks!
yesterday i recieved a phone call to tell me that my test showed a 1 in 15 chance of downs syndrome! i am really shocked and very scared 1
im 25 years old and this is my 1st pregnancy! we have decided to have the amneio and thje FISH test 2moro !! looking at other peoples sucess results is gr8 to get me through the night and the next 30 hrs! we r both very young and healthy so i'm hoping i have a good chance !! x

 

[moochacha]

A beautiful family with her beautiful daughter who has down syndrome. https://www.kellehampton.com and her birth story https://www.kellehampton.com/p/nellas-birth-story.html. Really inspirational and beautiful I hope you get the time to look at it