# Worried 1:5 chance of down syndrome



## Emzy1

Hey every one I found out a few days ago I'm very high risk 1:5 of having a baby with downs syndrome I have been a mess since trying to convince myself nothing is wrong then convincing myself something is wrong.
I'm 24 so fairly young to have such a high score. My NT was 3.8 which put it up high.
Has any one else been in this situation and what was the out come any info or experiences would be great


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## Brom

I am feeling the same as you since I got my high risk result. Can I spend the next 5 months worrying or will one day everything click into place and I will chill out? I wish there was another way to get reassurance except for having the amnio. I know what you must be going through but you are not alone in this x


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## JaydensMommy1

I nurse and have seen many women with 1;4 chances and everything turns out fine. The question is only what you will be able to handle next. Some women chose amio while others don't. I've seen it go both ways an respect each decision:) I know that what both of you are going through and it's a very trying time. Everyone wants their baby to be perfect and in most cases this happens. There are so many false positives- really. Women tend to ask me sometimes if they should undergo the fetal abnormalities screen and bloodwork and depending on age most of the time I will say honestly no. Because the false positives are possible it's better to not worry.
Now with the increased nuchal fold ive seen it go both ways too. The real question is how will those results come back and if so will you opt for amnio?
Any questions I'm here. :hugs: I wish the very best for both of you!


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## Emzy1

Thank you for the quick replys I'm booked in for an amnio but still unsure if I'm going to go through with it I don't know if the risk is worth because I will have the baby either way but I think I need to know to prepare myself, It's a horrible situation to be in but in a way reassuring that other are going through it too and I'm not the only one. Thank you Jaydensmommy nice to hear a nurses side of it fingers crossed we are the lucky ones with a false positive Brom do you know what gave you the high risk was it the blood tests or high fluid on the NT scan or both x


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## Nyn

just wanted to give you a :hugs: hope everything is ok xxx


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## Brom

emzy It was the blood test that gave me high risk


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## ELLEMUM

Hello Emzy, Just wanted to give you a positive story as i had a 1 in 8 chance with a 4mm NT fold and blood tests combined. I am now sitting cuddling my 7 week old baby boy who is perfect. I did have a very worrying pregnancy and lots of scans and i know exactly how you are feeling. Hope this helps a little. x


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## Emzy1

Thank you ellemum that's so nice to hear, and congratulations On your baby boy, did you have any further tests when you found out you were high risk or wait it out x


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## JaydensMommy1

I just met a lady today who had 1:4 chance and her baby is perfectly healthy:) your age really favors your outcome. were there any other markers?


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## Emzy1

No other markers my hgc was slightly higher than my Papp results but I was told they wouldn't be too concerned about that if my NT reading wasn't so high thank you for the story there is hope! I'm going for the amnio on Thursday I need to know I can't handle all this worrying


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## ELLEMUM

Hello Emzy,

I opted for the CVS as i had to know and would also give me and the baby the best care when born if they knew there was a problem. I had mine done at St Georges fetal medical unit and they were fantastic, they had top equipment and a professor doing the CVS and scans. The worst part was the wait for results as they said 5 days but they called me after 48hrs and i got the full set 2 weeks later on christmas eve!
I also had follow up level 2 scans and a cardiac scan as a high NT fold can indicate heart problems. They will also do a level 2 ultrasound before the amino to check for markers.

I hope this information helps as i know i wanted to know everything i could, good luck for Thursday and i know exactly how you will be feeling waiting for those results. 

Let me know if you need any further information.


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## Emzy1

Thank you so much it's great to hear some more info from someone who has been through it rather than the doctors and midwives point of views. The waiting is going to be the worst especially as you have to have time off work and rest for a few days after so will be harder to take my mind off it. One question if you read this before tomorrow does it hurt I know you had the cvs and I'm having the amnio but I'm guessing they are fairly similar. X


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## ELLEMUM

Hi, when i had the CVS i was told i had to stay very still and make sure i made no sudden movements when the needle went in, i just held on to my husbands hands so tight and closed my eyes so i could not see anything. I was expecting it to hurt but it was more an uncomfortable feeling and i think it went on for about 30 seconds but i cant be sure. It was defiantly better than what i was expecting. After they offered paracetamol which i took and i could feel slight cramps for about 24 hours. I would drive to the hospital and get someone to drive you back as i did feel a little bit dizzy and could not face public transport!!

I hope you get the same results as i did, i did lots of research on the matter and there are lots of positive stories around with people that had the same NT thickness as us.

Take care x


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## Emzy1

Thank you for replying so quickly, I'm going to be squeezing my boyfriends hand so hard, I have read lots of positive stories but also not so positive I guess it's just a waiting game now. thank you again for you info it's really really helped, my appointment is at 9am this morning so not long to go now x


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## Emzy1

Got the all clear can't believe it all that worry over the last couple of weeks so happy right now, also found out that's it's a boy can't wait :)


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## JaydensMommy1

Yay!!! Congrats


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## animalcracker

Emzy1 said:


> Got the all clear can't believe it all that worry over the last couple of weeks so happy right now, also found out that's it's a boy can't wait :)

Hi there!

Would you mind explaining the process for an amnio? Did it hurt? How long did it take and how quickly did you get the results? Also, did your insurance pay for it?

I am due to get my 1st tri screening done very soon and I am going back and forth on whether or not to have an amnio if our results seem risky. I would love to know what to expect! 

Thank you so much!


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## Emzy1

Hi animal cracker, the amnio was a lot better than I thought it didn't really hurt just felt really uncomfortable but the doctor and midwife there were great and talked through every thing they did. 
there is a risk of miscarriage I was told it was 1 in 1 hundred with but but my odds were 1 in 5 of something being wrong and I just had to no if my results were higher like 1 in 100 I don't think I would have got it done, they clean your tummy then put the needle in the tell you when its going in then when its in the sac the baby is in then you have to take it easy and rest for a couple of days the worst part of it was waiting for the results it's 3 working days I had the amnio on Thursday and got the results this afternoon you then have to wait another to weeks for the full results but they check for the most common first. 
I'm in England so our healthcare is free on the NHS but I'm guessing if you were high risk you would get it on insurance. Congratulations on you pregnacy let me know if you have any other questions or need any more info


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## animalcracker

Emzy1 said:


> Hi animal cracker, the amnio was a lot better than I thought it didn't really hurt just felt really uncomfortable but the doctor and midwife there were great and talked through every thing they did.
> there is a risk of miscarriage I was told it was 1 in 1 hundred with but but my odds were 1 in 5 of something being wrong and I just had to no if my results were higher like 1 in 100 I don't think I would have got it done, they clean your tummy then put the needle in the tell you when its going in then when its in the sac the baby is in then you have to take it easy and rest for a couple of days the worst part of it was waiting for the results it's 3 working days I had the amnio on Thursday and got the results this afternoon you then have to wait another to weeks for the full results but they check for the most common first.
> I'm in England so our healthcare is free on the NHS but I'm guessing if you were high risk you would get it on insurance. Congratulations on you pregnacy let me know if you have any other questions or need any more info

Thank you so much for taking the time to write this! I really appreciate it. It really does help knowing how the procedure works.

Also, congratulations on your results - you must be so relieved! xoxo:hugs:


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## mamawannabee

I am going through the same thing, am 19 and have just been told this morning that I have a risk of down syndrome due to an u/s abnormality. We saw the high risk ob and he told me I could get the amnio to know for sure, but for us the risk is not worth it. Like you said, you will love and keep the baby either way, it will just help you prepare for it before. Yes, it would be nice to know, but I can't imagine miscarrying and knowing that it was because of the test. And as others have said, in so many cases the baby turns out fine, 1 out of 5 seems high, but that means you still have a 75 percent chance of a healthy baby still. Sending :hugs: your way, I know the worry is difficult, but with age on your side, as my doctor said, even with the risk factor being high, your likelihood of a healthy baby is much greater than an older woman with a 1 in 5 risk.

Edit, just saw your second page update, that must be such a relief for you! Congrats on a healthy baby


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## ELLEMUM

I am so pleased you got good news, i have been checking all day to see if you had your results. I also found out after the CVS i was having a boy it is very strange knowing at 13 weeks!

Great news, take care and enjoy the rest of your pregnancy.

x


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## Caseys

I am an "older" woman who just got a 1 in 5 risk today due to low PAPP-A in my blood test. I'm also completely freaked out but at the same time I've read about a lot of false positives. My HCG levels and NT measurement were both normal so that's on my side. It's still really scary though! My amnio isn't until the end of the month...


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## libee17

I am in a similar situation. Had my NT scan on wed. Got a 4.4. sceduled a cvs for fri and now am waiting on the results (they should be in by fri). I would love to know as you ladys fo on how the rest of your pregnnacy progresses and what your results from cvs or amnio are. I am 28, this is my first child and because of my high nt, they didnt even bother talking bloodwork.


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## eulmh82

My cousin got a high risk and her baby has turned out to be very healthy. I was talking to my midwife about these tests and she says that even if you get low risk it doesn;t mean the baby won;t have it.


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## SabrinaKat

I'm 43 with an age risk of 1/27 and other 1/48. After NT/blood work, my risk for downs is 1/162 and 1/955 for others with a nucal fold of 1.45mm. We decided to skip cvs and wait for wk16 scan before deciding about amnio -- thanks for all the info and glad to hear that all of you have received good news!

best wishes


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## amberlindsay7

Hi, I'm glad I found this thread and happy to hear a few of you girls have found out everything is going to be ok. I'm 32 and found out today that I have a 1/140 chance of downs and am going to have a more detailed scan with a consultant in 5 weeks. The nurse said that nothing stood out as a risk, just bloodsnuchal measurement etc combined to be high risk. I have no idea whether to have amnio to be sure, does anyone know if you can leave the amnio until about 18/19 weeks?


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## TinyToon

I'm in the same position, 38yrs old nuchal measurement of 2.2mm which is normal, PaPpa level normal but hcg was 1.8 (1 being normal level) and my DS risk is 1:75! I was told today that an amnio can be done anytime after 15 weeks up to about 20wks but that is the maximum time limit should they detect abnormalities for you to make a decision. We are still undecided due to previous miscarriage, haemorrhage this time and current brown spotting.

I hope this helps in some way.


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## amberlindsay7

Thanks Tinytoon, that does help - sounds like we are in a similar situation. My detailed scan will be at 18 weeks so I guess we'll try and remain positive unless the scan tells us otherwise - at least I can still opt for amnio if the scan doesn't go as well as we hope. Let me know how you get on and take care x


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## Caseys

I just had my amnio, get the results on Friday. I went from a 1 in 5 chance of Downs to a 1 in 10 just from the ultrasound before it where they looked for 10 markers. Fingers crossed!


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