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.

 

[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

 

[hoping4no3]

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

 

[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.

 

[Whitesoxfan41]

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

 

[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.

 

[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.

 

[hoping4no3]

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.

 

[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.

 

[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

 

[MonyMony]

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.

 

[hoping4no3]

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

 

[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!

 

[hoping4no3]

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.

 

[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!

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.