# need help please im a mess. Just got NT test back high risk of down syndrome



## hoping4no3

Hi all.
my doctor just advised me that I have a 1 in 28 chance of having baby with down syndrome. She wants me to have amniocentesis done but I have to wait till im 15 weeks. 
My results are:
NT = 2.54mm
Beta HCG = 3.2390 MoM
OAPP-A equivalent to 0.9700

adjusted risk 1:28

Can anyone help me im so stressed.


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## Berri

Didn't want to R&R...

Not sure about all the numbers (because I didn't do combined screening, just the scan) but my OB said that under 2 is 'normal', 2-5 is 'a bit risky' and over 5 is 'definitely reason for concern'. I also found this _" As a guide, the 'top' level of normal tends to be somewhere between 2 to 3 millimetres (mm), with above 3mm definitely being larger than normal."_

A 1 in 28 chance of a baby with DS means you have a 27 in 28 chance of that not being the case right? Good luck with your amnio :hugs:


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## hoping4no3

Where did all the replies go. I had heaps now I have one. Can people please repost so I can read.


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## Garnet

I don't know what part the world you are on but there are non invasive blood test that are 98% . Harmony is one of them. Instead of amnio. I had a amnio and it was like a bee sting but very wobbly after and just rested. It was more stressful waiting for results.


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## Whitesoxfan41

I was high risk as well, had Materni21 (the blood test) and it's 99% accurate and much less invasive than amnio. HUGS!!


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## shiseru

With the risks of CVS and amniocentesis making pregnant women wary, there is a new test called the Harmony prenatal test. It's a safe, highly accurate, and affordable non-invasive DNA test that detects common fetal trisomies as early as 10 weeks with a simple blood draw.

I took the Harmony BT when I was 11 weeks pregnant, and received my results after 10 days. I am 39.

Those who tested positive during the NT scan, or even before taking up the NT scan can request to have the Harmony BT. If the results is clear, your doctor would usually not ask you to do an amnio.

Remember, the NT scan is a statistical predictive test only, it is a statistical analysis of a combination of your age, blood test results and NT fold measurement.


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## hoping4no3

These two other tests you speak of where not offered to me. I was only told of amnio test. 
Im stressing out and im thinking the worst. 
I have done some research and found out my beta hcg level is 3 times higher than normal.


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## hoping4no3

shiseru said:


> With the risks of CVS and amniocentesis making pregnant women wary, there is a new test called the Harmony prenatal test. It's a safe, highly accurate, and affordable non-invasive DNA test that detects common fetal trisomies as early as 10 weeks with a simple blood draw.
> 
> I took the Harmony BT when I was 11 weeks pregnant, and received my results after 10 days. I am 39.
> 
> Those who tested positive during the NT scan, or even before taking up the NT scan can request to have the Harmony BT. If the results is clear, your doctor would usually not ask you to do an amnio.
> 
> Remember, the NT scan is a statistical predictive test only, it is a statistical analysis of a combination of your age, blood test results and NT fold measurement.

Hi Shiseru
I have been doing some research and my beta hcg level is 3 times higher than normal and the PAPP should be 1 so its low. Reading the net they say higher beta hcg and low PAPP can be down syndrome, hence why im so stressed and upset. Not sure what is normal for NT I did here below 3 but I have not found answers to this.


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## Whitesoxfan41

The risk of amnio really is low. . .I had it with my youngest, it didn't even hurt. I hope you're able to get some answers soon. The waiting and not knowing is the worst.


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## wannabubba#4

I had a similar risk with my second son, when I was only 23 yo - I was devastated and scared, had the amnio (the waiting is horrendous but the procedure was not too bad) and he was (Is) fine.

Good luck xxx

Here we are told NT less than 3 is normal and I have rad stories of ladies on here with NT of >5 and been fine too xxx


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## MonyMony

hoping4no3 said:


> These two other tests you speak of where not offered to me. I was only told of amnio test.
> Im stressing out and im thinking the worst.
> I have done some research and found out my beta hcg level is 3 times higher than normal.

T21 and CVS are good tests, but you might be too far along for them so that's why they weren't mentioned. It's worth asking about though. 

Agree risk of amnio is very low. I read one article that it's probably below 1:400 which is often quoted.

Good luck and try to keep positive.


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## hoping4no3

Im so scared.
im scared of having amnio as well with the 1% risk factor. I havent stop crying in two days.


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## Garnet

It more scary than it actually is! I cried and worried too! They did it and it felt like a shot and it was over with before I knew it. It will be okay!


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## hoping4no3

Garnet said:


> It more scary than it actually is! I cried and worried too! They did it and it felt like a shot and it was over with before I knew it. It will be okay!

Not knowing the results is what is eating me up right now. The what ifs, what if the test confirms ds. I just dont know what I would do.


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## Garnet

Yep waiting is the hard part! I have a child with special needs and she was born perfect but got sick afterwards! She is the sweetest little thing! I really don't think anything is wrong with your little one! My friend popped up 1in 5 for Downs and chose not to do invasive testing and waited excruiticing for the 18 weeks scan and baby was perfect. So please try to think positve!


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## Whitesoxfan41

Do tons of research. . .I know many parents with DS kiddo's. . .they're nothing but a huge blessing all the way around. I'm not judging!! It's not the worst diagnosis though.


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## shiseru

hoping4no3, apparently these test give a lot of false positive. Does Down syndrome run in your family?

I lost my first child at 20 weeks due to Spina Bifida, we were devastated but decided to end the pregnancy, we did not want to compromise the quality of her life, and to see her suffer going through surgeries. 

But at this point of time, you need to take one step at a time. Before doing an amnio, ask yourself what would you do if the results is positive? Are you going to keep the baby? I am the type of person who wants an answer, so I would opt for an amnio. The choice is personal.

Remember at the end of the day, any screening test is just a risk assessment, it gives you a percentage of risk, not a diagnosis.


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## Bcinla

I just went through this last week! We were given a risk of 1/59 for downs from my first trimester screening and I spent a couple weeks in total panic! We did the Harmony test which looks for fetal DNA in the mother's bloodstream and it 99% accurate for detecting downs an other trisomies. It took forever for us to get our results (the results usually come back in 10 to 14 days but I had to do a redraw) The results came back negative with a 1/10,000 chance of downs syndrome. So try not to let this risk predictor scare you. It is just a predictor of risk, not an actual diagnosis. I would ask your doctor about the non-invasive tests (the Harmony and Maternity21? are two of them). We paid almost $800 for it but boy was it worth it to have the piece of mind and not need to go through an amnio! Hang in there, I am sending healthy baby thoughts your way.


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## MLC20

Hi my risk was 1:10 this time round with my nuchal fold being 3.3 which is considered quite high. I ended up paying to have the non-invasive screening which is very new over here so costs quite a bit but, it was very reassuring to know that now I am considered low risk. I am now 20+5 weeks and will have another scan at 23+6 weeks to check the heart a bit closer as a high nuchal fold can indicate heart difficulties but, from the scan this week they are not too worried. Apparently some women just have high nuchal fold readings. 
I know in the weeks leading up to the test and the results I was preparing myself for the worst, I looked into what support agencies were around and what they could provide and decided that if I got too anxious while waiting the I would give them a call and get some information early. Fortunately my parents were here so that kept me distracted.
I wish you all the very best and hope that you get great results back.


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## Scout

I wish you all the best. I had a 1:11 risk for trisomy 13 and 18, and 1:17 for downs. I did the matertnit21 test and all came back fine. The waiting was absolutely horrible.


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## ClaireJ23

I had the Harmony test, it's 99.9% accurate and measures fetal DNA in the mother's blood so is non-invasive. You need to research your testing options.


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## Larkspur

No personal experience sorry, but I have a friend whose result came back 1:16. After CVS, she was cleared, and her son was born healthy and normal.

Since you're feeling stressed about the unknown of a DS reality, here's a blog you might find interesting/reassuring to read - a mum whose second (beautiful) daughter was unexpectedly born with DS. 

https://www.kellehampton.com/

I hope everything works out for you. :hugs:


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## Beanonorder

Sorry you're going through this. I also don't have personal experience but wanted to share my best friends experience.
She had two miscarriages earlier this year - the second one due to Turner's syndrome. She is pregnant again now and got a call from the doctor three weeks ago to please go in and see him. When she got there she was told that with the tests that had been done (scan and some kind of blood test, not sure what) the baby had a 1 in 5 chance of having DS. She opted to have the amnio despite being terrified. Afterwards she told me it wasn't as bad as she expected and that it didn't hurt. They got the results the following week and received an all clear for their little girl. 

Good luck, I hope it goes in your favour.


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## girlnboots

I think the first thing you should do is decide if the results really even matter. We have a genetic disease in my family that kills babies before their 2nd birthday, usually much earlier. We discussed our risk factors, etc, with a genetic counselor. The blood tests these other ladies mentioned either weren't available or weren't affordable, but we could have done an amino. 

We ultimately decided the results didn't matter. Termination isn't an option for us, so we have researched the disease, symptoms, treatment, etc, so we can be prepared and prolong our baby's quality of life. We couldn't stand the thought of carrying our baby to term knowing as soon as she was born, her clock was ticking. 

Just keep in mind that no matter what you do or what the results are, you and your OH will decide the right thing for your family.


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## Foxy37

mine came back high also due to my hcg being higher . However i looked at the many causes for hcg being higher and i also knew even if baby did have downs i would not have terminated.
I didnt go through with th test and during all my scans including 4d there have been no markers for downs or any other syndrome .
You must do what is right for you , i hope your ok as i do remember the upset i felt at the time xx


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## Havmercy

hoping4no3 said:


> Hi all.
> my doctor just advised me that I have a 1 in 28 chance of having baby with down syndrome. She wants me to have amniocentesis done but I have to wait till im 15 weeks.
> My results are:
> NT = 2.54mm
> Beta HCG = 3.2390 MoM
> OAPP-A equivalent to 0.9700
> 
> adjusted risk 1:28
> 
> Can anyone help me im so stressed.

When I was 38 & pregnant with our first, my NT results came back 1:16 for downs. I had high hcg and low Papp-a scores. We had an amino and the results came back good. I continued to see a high risk doc because of the Papp-a scores. It indicated a placenta problem, early labor, or low birth weight baby. I had an amino every 4 weeks until my 32nd week then I went into premature labor. Our son was born at 32 weeks with no complications. We spent 6 weeks in NICU so our son could learn to suck and swallow. He is 16 months now and very healthy. I'm 40 now and I am waiting on results from the maternit21. The NT test scared us so bad, we chose not to bother with it this time. We will do an amino if the materni21 comes back inconclusive.


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## Whitesoxfan41

Any update? Have you been able to find anything else out? Hope you're doing well! HUGS!


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## WANTS1MORE

praying for you and your family


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