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



## kessutripp

Hi.

I had a blood test and ultrasound done and they combined into a really high risk of having down-syndrome baby. It's one out of five and I realize I still have a 80% chance of having a healthy baby, but I'm still so worried and can't stop crying.

I will have a chorion biopsy done next week.It's dangerous, too, of course. But I'll take the risk. If it takes back positive, I'll probably just go mad...

Have any of you had such high risk or similar and still had a healthy child? And if so, what were your reasons for high risk? Also, any numbers with confirmed DS would be helpful. I know it doesn't mean much, but... antway.

My numbers resulting in high risk are:
Age: 34
2 healthy childs
gestational age: 12+2 weeks
fetal heart activity: regular
fetal heart rate: 161 bpm
crown-rump length (CRL): 59.0 mm
nuchal translucency (NT): 2.5 mm
nasal bone: normal
facial angle: 87
tricuspid doppler: abnormal (regurgitation)
ductus venosus doppler: normal
choroid plexus cysts: no
intracardiac echogenic focus: no
hydronephrosis: no
hyperechogenic bowel: no
IT: 2.0
ARSA: negative
Free b-hCG: 58.1 IU/l equivalent to 1,489 MoM
PAPP-A: 1.000 IU/l equivalent to 0.51 MoM
PI left: 1.45
PI right: 2.69
lowest PI 1.45 equivalent to 1.045 Mom
Mean arterial pressure 96.0 mmHg equivalent to 1.125 MoM

I don't know what half of those mean :(
But I know the regurgitation and one of the hormones show a high risk.

Please give me some hope :cry:


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## coccyx

Does the biopsy show chromosones like an amnio?


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## kessutripp

yes, it does show the chromosomes just like amnio.
it can just be done earlier (I'm only 13th week and here they don't do amnio before 16th week) plus it gives you an answe in a week or so.


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## louise85

Hi hun :hugs:

My Nt measurement was 2.8mm and my risk was 1:89 off that alone (I'm 24) but after my bloods its now 1:270.

Your measurement is still in the normal range (I believe the cut off is 3mm?) AND the nasal bone is present which is a huge plus as 3 out of 4 babies with downs don't have a nasal bone at this stage :thumbup:

So is it just the heart problem thats pushed your odds up? If so a heart problem doesn't automatically mean downs.

Can I also say there is a lady on here (I'm really sorry can't remember her name, but if you look on the thread, "high risk for downs but refused amnio", you should find her) that was 1:5 and everything came back fine!

Good luck hunny

xxx


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## kessutripp

its some heart problem which is characteristic for downs.
and one of the two hormones they test from blood (PAPP-A) was also showing high risk. 
the facial angle was also too high if i understood correctly
and they weren't too happy about the NT either


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## midori1999

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.


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## khegidio

My risk came back as a 1:47 chance of downs. I have decided to do further testing because i feel like I need to know what to prepare for. 

I have an amnio test this friday.


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## lizziedripping

Hi hun, so sorry you have this worry hanging over you, and I can totally understand your need to know.

I have zero experience with this issue, but all I can say is that we had a private scan with a consultant done at 12wks. He of course couldn't be certain the babies were healthy, but made a huge deal of the fact that both bubbas had a nasal bone. He is very experienced and before blood tests came back said, based on that fact alone, that he was very confident about this pregnancy. (That's if my dodgy cervix could hold up ;) )

The nasal bone thing must be a really significant marker for downs. Also, I did read somewhere that the blood tests are often misleading. I.e. a woman can come back as high risk on a blood test and this does not correlate very well with her actual risk of downs. Similarly a low risk result doesn't correlate well with NOT having a down's baby. It's not an exact science - only the amnio is really conclusive.

I suspect the heart marker is the thing making them edge their bets. I'll have a scout around and see if I can find out more about it for you. Don't lose faith tho hun, I suspect that you may still be ok xxx


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## nikkip75

i had a 1 in 50 chance of my baby having downs syndrome due to her having 2 cysts on her brain (choroid plexus cysts) and an echogenic foci on her heart (they called it a golf ball) they told us these where 2 soft markers for babies with downs and we were offered the amnio but didnt have it done.Wouldnt have made an difference to us if she was downs or not.

That was at 20 weeks and Eden is 7 months now and perfect! She had a brain scan before we left the hospital and told the scan would be shown to the consultant later that day and we would get a phone call in a few days to let us know if the cysts where still there, the doctor phoned a few hours later to tell us they had gone! Her heart sounds fine so that must have gone aswell.

Dont worry too much, i think they always give us the worst case senario just to cover themselves, which doesnt help us, it just make us worry worry worry! But also like midori1999 says downs syndrome isnt always the worst case senario :hugs:


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## lisa9999

hiya hon
A friend of mine also had a 1 in 5 downs risk, she had the amnio etc and it was all fine. she had a perfectly healthy baby in Nov.
Not sure why it was so high, I dont know if she knew either....

x


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## mummy3

My second baby came back 1 in 4 after blood tests and NT scan, I had a cvs at 13 weeks and hes fine, My 3rd baby also came back very high risk but cvs showed she too was ok:thumbup:
Its hard but try not to worry, and relax until you know either way:hugs:

ETA I was 24 when had my son and 25 for my daughter.


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## vermeil

hello!

aww, honey... *hugs* I can fully understand. My risk is only 1:117 and I`m really nervous too. Just remember there are up to 20% false positives with certain scan markers. 

I presume you had the NT scan before 12w2d? isn`t that early for this test? Though I suppose I had mine at 13w. Have you given thought to waiting two more weeks and having another scan? Or getting a second opinion? My doctor said more advanced, specific ultrasound/bloodwork scans did exist for specific cases like this one. They might be available in say a children`s hospital if you do some research.

I fully understand that if I had a babby with downs I would love them fiercely, as much as any baby. Then I remember my great aunt who still has to dress, bathe and take care of her 30 year old, 250 pound son every day. We love him dearly of course! But still it`s something to think about.

With that said some cases of downs are very mild - the child catches up with a bit of extra coaching and grows up to have a normal life.

Please keep us updated hmm? and try to keep hope up - the odds are still strongly on your side

*hugs*


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## kessutripp

Thanks everyone foe your words and experiences, I do feel a little bit more calm now. And I realize I still have 80% chance of having her healthy and steady (well, probbaly still not completely, the heart condition will be still there...). I just hadn't heard of anyone having quite such high risks... Everyone I know is kinda worried even about 1:300 and such. I FEEL she's ok, but I just don't KNOW if I should trust the feeling... 

I had the scan exactly at 12+2. And the scan actually gave her 12+4, which is a relief as the down babies tend to be small as much as I understand. And actually it WAS the specific blood/ultrasound test, not the regular NT one. That's supposed to be the perfect time for the test around here...


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## LucindaE

Kessustrip

:hugs::hugs: to you. 

I have some idea of what you are going through, as I had a blood test come back with high risk of Downs, not so high as you but one in thirty something. 

Everything was fine. It was a few years ago, and I went for a amnio. After it, I had stabbing pains in the womb and I thought a miscarriage was starting as there is a risk of that but it wasn't, thank goodness.

It was torture waiting for the results. I'm so glad that they can give a reliable result earlier now.

I have a feeling about you that all will be well. Rely on that feeling of yours, they are usually right.

Thinking of you. 

:flower: 
LucindaE
XXX


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## kessutripp

Well I'm going to have my biopsy today. Keeping mu toes and fingers for good results and no complications.
Oh boy am I nervous...


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## A3my

Hi *kessutripp* - I'm a bit late seeing this but I wanted to tell you my story. My babies NT was 4.4mm and I am 31. This is my third baby. I was told 1:4 risk before bloods. I didnt wait for the bloods I went straight for CVS becasue I needed to know. I know how you feel, the whole experience was dreadful but stay strong. I got the CVS preliminary results the next day and he was clear for Downs, Edwards, Patau's and Turners syndromes. A couple of weeks later I got the complete screen and he was chromosomally normal. The fact your baby has a nasal bone present is a really good sign he is normal. After the CVS results I got my bloods back and my overall risk was 1:50 ish I think. I've had a cardiac scan which was clear and growth scans. After my 28 week growth scan they said I am now low risk and the baby is normal. Fingers crossed you will have good news tomorrow, it is only a risk. They now say the raised NT was just part of the normal distribution, like someone being 6 foot tall. x x x


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## Mum22GTTC

Hi there,

I have had two pregnancies with high risk downs - after having my triple screen blood test at approx 14/15weeks. 

I was age 22 with my 1st - 1 in 20 chance

And age 24 with my 2nd - 1 in 100 chance

I had the amnio in both pregnancies and both babies were absolutely fine.

It's such a worrying time for you, my thoughts are with you - I sometimes think we'd be better off if these statistical tests didn't exist, as they seem to be very unreliable and cause such a lot of worry. But like you I felt that I just had to know once one the high risk was detected.

I've been told that it's likely my result will come back high risk again in this pregnancy - no explanation why. Just that as it's happened twice before, I should expect it.:wacko:

Try not to worry, good luck with your pregnancy :flower:


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## lottie7

Wanted to wish you lots of luck.

xx


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## khegidio

kessutripp said:


> Well I'm going to have my biopsy today. Keeping mu toes and fingers for good results and no complications.
> Oh boy am I nervous...

Good luck today kessutripp. I'll be thinking of you today. I'm sure all will be well. 

:dust:


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## kessutripp

I haven't received any results back yet. They actually told it can take up to a week to get the preliminary results, blah... Surprisingly, I'm more calm than before the CVS. Although the procedure wasn't a pleasant one and it hurt for hours later.
Well, the waiting game it is.


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## LucindaE

Ah, Kessustripp, it is so hard waiting,:cry: even though you know the odds are on your side and you have a good feeling, somehow... Sorry that it hurt, too. That's all you need.
Thinking of you. :hugs::hugs:

LucindaE
xxxx


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## lottie7

Hope your ok and coping with this awful wait.

xx


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## bump_wanted

i have my fingers crossed it doesnt take too long for your results and they are ok xxx


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## khegidio

Waiting is the worst....Thinking about you. Hopefully you'll hear something before the end of the week and you won't have to go another weekend waiting.


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## vermeil

I`m waiting for amnio results too - and just like you I feel much calmer now than before the procedure. I`ll be thinking of you! I`m sure results will be fine :thumbup:


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## lottie7

Any news?
xx


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## I'mHopinG

Good luck to those waiting for results. I will be thinking of you.

I am 29 and pregnant with our first baby. I have been told my risk is 1 in 33. I have an amniocenthesis on Thursday and to be honest i'm really nervous about it. Then of course there is the dreaded wait for the results! Gosh this is so stressful!


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## khegidio

I'mHopinG said:


> Good luck to those waiting for results. I will be thinking of you.
> 
> I am 29 and pregnant with our first baby. I have been told my risk is 1 in 33. I have an amniocenthesis on Thursday and to be honest i'm really nervous about it. Then of course there is the dreaded wait for the results! Gosh this is so stressful!

My risk was 1 in 47. We had an Amnio on Friday 02/26. I am not sure where you are located or what they offer there, but here in the US when you have an amnio they offer early results (FISH test) in addition to full results. The early results screen for only trisomy 13, 18 and 21 (downs syndrome),and the sex. The full results look for any chromosomal abnormalities on all chromosome pairs. 

We got our early results back (which are accurate) the following Monday 03/01 and found out our baby was negative for trisomy 13, 18 and Down's syndrome.

Are you able to get the FISH test? It may help calm your mind while waiting for the full results. 

Wishing you lots of luck!!


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## kessutripp

I still have no news and it has been ten days for now :(
I opted for an early test and it was supposed to take a week max.
I called the clinic and the girl said it's possible they didn't get enough cells for the early test. I don't know, never heard of that before? And the doctor doing the procedure didn't say a word about "not enough cells"...
The full results should come back in three weeks... Well, it's two more weeks wait...


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## LucindaE

Ah, poor you, Kessutripp! :hugs: 

The clinic really should have notified you aout 'not enough cells' rather than keeping you in suspense like this! :dohh: I'm really sorry, it is just too bad...

I still feel everything will be OK. This must be torment. Try and take it an hour at a time. 

:hugs:
LucindaE
xx


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## whyme

So sorry to hear what you are going through, must be horrendous waiting. The community midwife who looked after me when I was expecting my son- her sister in law had a Downs risk of 1 in 4 and everything turned out ok. I know it must be very hard to keep positive, but even at 1 in 5, the odds are still good on the baby being fine, plus you have other good signs. Sometimes, all these tests, scans etc worry people needlessly. It's disgusting the lab haven't informed you if there is a problem with the sample - I would chase them up and maybe speak to someone else...


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## I'mHopinG

Hi khegidio in the UK we are offered the early results but i believe most hospitals charge for this. My hospital, for example, charges £175 which is about $262 dollars i think. My partner and I cannot afford this so we are going to have a 3 week wait for the full results - more worry! Thanks for the positive thoughts. Congrats on your results.

kessutripp i hope you get your results soon. I'll be thinking of you x


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## khegidio

Sorry to hear that. I don't blame you.... If I had to pay extra for the early results then we would be waiting too. Times are tough these days!!!

3 weeks will be over before you know it! Hang in there. All will be well. Just keep thinking positive thoughts for you and baby!!


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## Sammy2009

Good luck with the results hun :hugs::hugs::hugs:


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## LucindaE

:hugs:How awful, that people should be disadvantaged through not paying in the NHS... 

:hugs: to kessutripp and everyone. My experience was years ago, but I know what you are going through. I wish I could do something to take the pain away.

LucindaE
xxx


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## lottie7

Thinking of you.xx


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## rachm

I had an amnio done at 16wks and I had to wait 12days untill I received the results so I know how hard it is.

I hope it all comes back ok for you and I know by experience that nothing will take the worry away untill you get the results.

Take care I hope you get the results soon.

xxx


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## XxXBubsXxX

Ive had 3 cvs due to husband being a carrier of patau syndrome or trisomy 13. The first with my daughter 4 years ago and rresults were back the next day as all clear! The next was with this one in oct and when they took the needle out they said straight away that there was not enough Villi taken and i had to have another one there and then so 2 in one day! So doubling all the risks. All cam back clear but the results took 8 days this time and because they were so quick before the wait felt awful. All was clear even though for every pregnancy we have a high chance of the baby having it. Good luck and try not to worry.


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## Marleysgirl

Sorry, only just seen this thread ...

I had a DS risk of 1 in 5 too, and that was the one of the highest seen round here! But we made a conscious decision not to have any invasive testing carried out, as we wanted our baby regardless. We inverted the statistic to say that there was an 80% chance of our baby not having DS.

Andrew was born extremely premature due to placental bloodflow problems and spent 11 weeks on NICU - but it was confirmed early on that he did not have DS or any similar genetic problems :D

So there you go - a positive story!


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## kessutripp

Thank you everyone for your words and experience and just for being there when I had nowhere else to go and noone elso to talk to.
My results came back today and all is as good as possible - my little GIRL has no down no other syndrome. The heart conditions need a re-check later, but it's not letal as much as I understand.

It ONLY took 24 days of the most horrible wait...


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## LucindaE

Great news, darling. So happy for you. :yipee: 

Now you can look forward to your baby. 

:hugs: :hugs: 
LucindaE
xx


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## Szaffi

Now relax! I'm so glad for you! Wish you an uneventful and happy pregnancy.


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## lizziedripping

Thank goodness for that sweet. I've been following your story, and praying and hoping xxx


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## kessutripp

Thanks girls :)

Yes, I really feel I can enjoy my pregnancy now! I even wear clothes today which really make me look like pregnant - was trying to hide before...:cloud9:


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## LucindaE

:thumbup: Show it off and enjoy every minute of it from now on...

LucindaE:hugs:
xxx


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## NatoPMT

lovely news, congrats on your healthy girl !!!


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## mommy2bej

My doctor never told me the numbers she just said the test was 'negative'. I've heard that a lot of the tests come out with a little chance, but that never means you wont have a healthy baby..


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## ShanandBoc

Im surprised so many people opt to have this tesating done. The only reason i would have it done is if it was downs that i would be prepared to terminate, which i wouldn't, so i thought whats the point? Its all just extra worry and stress when there could be nothing wrong at all.

I know we are lucky to have access to so much pregnancy testing but i really think its getting a bit much, all it does is create panic and innecessary worry, although i do understand why people want to know, personally i find it unnecessary. 

To all the ladies having testing i wish you all positive outcomes xxx


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## Mum22GTTC

ShanandBoc said:


> Im surprised so many people opt to have this tesating done. The only reason i would have it done is if it was downs that i would be prepared to terminate, which i wouldn't, so i thought whats the point? Its all just extra worry and stress when there could be nothing wrong at all.
> 
> I know we are lucky to have access to so much pregnancy testing but i really think its getting a bit much, all it does is create panic and innecessary worry, although i do understand why people want to know, personally i find it unnecessary.
> 
> To all the ladies having testing i wish you all positive outcomes xxx

Don't really think this is the most appropriate area to post comments like that!
Obviously all the ladies who have opted for the test on here did so becuase they wanted to and for their own individual (and valid) reasons, if you don't feel the need to then that's up to you, but don't pass judgement on anyone else - especially on a thread where ladies are asking for support.

I'm always surprised that so many people are so narrow minded when giving their opinions on these tests!


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## ShanandBoc

My post clearly wasnt passing any judgement at all, not sure how you came to that conculsion??

I was giving MY personal feelings on it as i feel it would cause me soo much worry, and i would keep the baby either way....if you read i use the word 'personally'. 

and wished all those getting the testing all the best for positive outcomes!!


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## Mum22GTTC

The thread was created to ask for positivity, not to ask for opinions on tests. 

There are plenty of threads on B&B that ask for opinions on these tests and of course if I had read your comment on one one those threads I would not have commented on it, but as it is I feel that you comment was made in the wrong place to the wrong ladies. That is my personal opinion.


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## ShanandBoc

Fair enough. Still no reason to be so rude. This was the first thread i had noticed on this subject and i am new to all this so i apologise if it was inappropriate.


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## mordino

kessutripp said:


> Thanks girls :)
> 
> Yes, I really feel I can enjoy my pregnancy now! I even wear clothes today which really make me look like pregnant - was trying to hide before...:cloud9:

Congratulations!!! I'm so pleased for you!

I know what you mean about trying to hide your bump before the results. I did exactly the same with my last pregnancy and even this one!


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## mordino

ShanandBoc said:


> Im surprised so many people opt to have this tesating done. The only reason i would have it done is if it was downs that i would be prepared to terminate, which i wouldn't, so i thought whats the point? Its all just extra worry and stress when there could be nothing wrong at all.
> 
> I know we are lucky to have access to so much pregnancy testing but i really think its getting a bit much, all it does is create panic and innecessary worry, although i do understand why people want to know, personally i find it unnecessary.
> 
> To all the ladies having testing i wish you all positive outcomes xxx

Well, I was high risk in all of my 3 pregnancies including this one - I still am high risk but I decided not to opt for amnio this time. I refused amnio in my first pregnancy and my daughter was fine. But I did have my CVS in my second pregnancy because my NT was so high so we decided to go for an invasive testing because we needed to know what we faced. As it turned out my baby daughter had Turner's Syndrome. I lost her at 17 weeks. Can you imagine how it could have been like if we carried on, looking forward to our 20 week scan only to lose the baby at 17 weeks? We were absolutely devastated. We wanted to carry on with pregnancy with hope that my daughter would be one of the lucky ones. I am glad we had a CVS because it gave us a chance to be prepared and to learn as much about Turner Syndrome as possible. We also learned during the CVS procedure that the baby had a heart defect and if she survived, she would need immediate medical attention and the doctors would be ready for her as soon as she was born. 

As you can understand that some of us need to do what is right for ourselves.


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## baileykenz

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?


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## Mum22GTTC

I'm the same, had 2 high risk pregnancies and so I am awating my NT scan in 2 and a half weeks to find out if this one is too. I was really trying to hold off buying materinty clothes but I can't fit into any of my usual clothes now, so have had no choice. 

When we were TTC I made the decison not to tell anyone until after the NT scan results, but I've got such a huge tummy already & have been so ill, that there was no way I could hide being pregnant. 

I keep trying to remain positive, but it's so hard. 
Good luck :flower:


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## baileykenz

positive is all im hearing at moment and i also tring to be that..how did other 2pregs go? did you have amnios?if you dont mind me asking what were your scores?
thanks emma


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## Mum22GTTC

No not at all, my first was 1 in 20 (Downs), I had just turned 22 year old when I got the results and my second was 1 in 100, just turned 24. I had amnios with both & both babies were fine.

The thing is, even if the result comes back at 1 in 200 this time I would still have the amnio, as that seed of doubt has been sown now.

I know that to many people 1 in 200 does not sound high, but I kind of feel like I was _lucky_ with the other 2, but this time I really feel that I won't be so lucky. The thought of getting three high risks & three healthy babies - just seems too unreal to me.

You have had a high risk result too? Was that from the triple blood test, or the NT scan?

This is the first time I will have had the NT scan, my results previously were only from the triple test.


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## baileykenz

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


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## baileykenz

kessutrip
congrats and goodluck thats great news..i have got my detailed scan on weds so hoping all is good there..lets spread the good news fingers crossed
emma


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## Mum22GTTC

baileykenz said:


> 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? :flower:


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## mordino

baileykenz said:


> 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!


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## 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!


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## 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:happydance:


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## 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


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## 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!


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## 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:cry::cry:


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## Mum22GTTC

miamia34 said:


> 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:cry::cry:

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

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 :hugs:


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## miamia34

Mum22GTTC said:


> miamia34 said:
> 
> 
> 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:cry::cry:
> 
> Hi, I'm sorry to hear that, please, please try not to worry. :hugs:
> 
> 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 :hugs:Click to expand...

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


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## Mum22GTTC

miamia34 said:


> Mum22GTTC said:
> 
> 
> 
> 
> 
> miamia34 said:
> 
> 
> 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:cry::cry:
> 
> Hi, I'm sorry to hear that, please, please try not to worry. :hugs:
> 
> 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 :hugs:Click to expand...
> 
> 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 youxClick to expand...

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 :flower:


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## miamia34

Mum22GTTC said:


> miamia34 said:
> 
> 
> 
> 
> 
> Mum22GTTC said:
> 
> 
> 
> 
> 
> miamia34 said:
> 
> 
> 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:cry::cry:
> 
> Hi, I'm sorry to hear that, please, please try not to worry. :hugs:
> 
> 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 :hugs:Click to expand...
> 
> 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 youxClick to expand...
> 
> 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 :flower:Click to expand...

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


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## miamia34

miamia34 said:


> Mum22GTTC said:
> 
> 
> 
> 
> 
> miamia34 said:
> 
> 
> 
> 
> 
> Mum22GTTC said:
> 
> 
> 
> 
> 
> miamia34 said:
> 
> 
> 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:cry::cry:
> 
> Hi, I'm sorry to hear that, please, please try not to worry. :hugs:
> 
> 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 :hugs:Click to expand...
> 
> 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 youxClick to expand...
> 
> 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 :flower:Click to expand...
> 
> 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 wellxxClick to expand...

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


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## 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 :flower:


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## Sammy2009

:hugs::hugs::hugs:


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## lottie7

Thinking of you.
xx


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## sciencemum

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


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## 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 :)


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## mumoffive

midori1999 said:


> 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


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## 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


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## 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 :hugs:


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## jacqui0122

I am 16 weeks pregnant and sooooo worried. I have two beautiful healthy boys 13 and 10. At 11 weeks had blood work and u/s done. Nasal bone was present and neck thickness in normal range. Blood and age put my risk of 1:120 of having a baby with ds. At 16 weeks I had another u/s done and they found a EIF -soft marker in the heart of my baby boy. Still have not gotten my blood work yet. And the soft marker will increase my risk. Can not stop crying! I will not have an amnio as I feel I could not terminate my baby anyway so I do not see the point with the added risk of losing the baby. Could not live with myself if I miscarry. Knowing at my age I will most likely not try again. The stress is unbearable. I am trying to enjoy the pregnancy and it seems so difficult. I loved being pregnant and I am sorry I did not try for the third when I was younger. I pray that all is well and that I am worrying for no reason. I wish I would of not tested at all. I want to believe that god gives us what we need to grow and become better people but its hard not to cry and blame myself for trying to have a baby at my age. I am so torn and need someone to talk to. My husband is not wanting to say anything of think about it. He tells me the baby is going to be fine. But what if he's not?


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## Rachelstarr

Not sure if this threat is still active but I'm looking for some support and positive experience. I'm currently 12 weeks pregnant as of TODAY! However, had a first tri screening NT scan and bloodworm last Tuesday and found out on Friday at 5pm results came cabs abnormal 1:5 risk of downs. Although the NT measurements were all within normal range my age - 40 combined with my labs show abnormal results. I realize 1 in 5 is stil 80 percent all is fine but I'm so scared. 

Is it true what matters most is the scan and the blood tests can be misleading?

We're doing CVS for sure next week so I'll have answers but this weekend had been torture and I know this wek will be too. we plan to order FISH to get preliminary results. 

Has anyone been in this boat who can offer some words of comfort?

Thank you all.


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## A3my

I'm not sure about bloods being unreliable but focus on the fact that you have an 80% chance your baby is fine *rachelstarr* :hugs: I had 1 in 4 odds with my gorgeous perfect son - I had CVS done. Its not pleasant, I found it emotionally very traumatic but my husband was wonderful. With support you will be fine. The wait for results is hard, make sure there is someone with you. We got the preliminary results within 48 hours and then the full chromosome result after about a month. we were all clear. I know it is SOOO hard, hang in there xxxxxx

*jaquii0122* - :hugs: I know its so hard but you still have a way to go until baby is here and somehow you need to get back to being positive. I'm saying this becasue I let the stress and worry ruin my whole pregnancy to the point that I had to be induced in the end due to high bp and it ruined my whole pregnancy and I can never get that back. I have read that EIF is only a marker for DS in 1 % of cases and your baby has a nasal bone present which is an excellent sign :hugs: worst case scenario you have a baby with DS - you love this baby enough not to terminate and as a childrens nurse I know that children with DS are wonderful special little people. This baby will be yours no matter what, try to focus on the joys of your growing bump and baby kicking. whatever happens I am sure you will be fine xxxxxx


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