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Support Group for Hi Risk NT Results #42

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#51 je14

Posted 11 March 2013 - 09:27 AM

Hi all, I am also new to this forum. I have been reading everyone's experiences on here and following everyone's progress.
I actually did my NT and blood test on the same day (i didn't do my blood test earlier). When I did the U/S, i was told that the results were good. NT was 1.7mm, Nasal bone present. The next week, I received a call from the Dr and was told my blood test results were coming back high risk so i had to re-do the blood test. After the second blood test, apparently the result was even worse. I was given a risk factor of 1 in 40, even though I'm only 28 y.o.  I'm not too sure which way the results were with the Papp A and the HCG, but one was less than 0.5 and the other was 7+.
So, the Dr recommended we do an amnio, but we are still deciding whether to go ahead or not.
I just have a question on the blood test results. Does anyone know whether the blood test results can indicate issues other than a DS?
My OB couldn't answer my question (maybe coz he doesn't specialise in these things as he sent me to a specialist Dr for the NT scan). I might call the Specialist Dr this week, but I just feel like I'm not receiving the information from my Dr's that others are. Any help will be much appreciated.

#52 Autumnmumma

Posted 13 March 2013 - 02:02 PM

Hi all,
Well, I didn't think I'd be back here, but here I am again. I posted in here 2 or so years ago when we came back high risk for T21 with Ds(1:79) due to NT being 2.70 and bloods being off. After an amino we got the all clear. At the 18 week scan we found out Ds had a small VSD (hole in the heart) but because it was so small, luckily it has not been an issue. So, Ds is now a happy, healthy almost 2 year old.

We had our scan for our 2nd bub yesterday. I was really hoping for a positive scan. But unfortunately due to the NT measurement (2.79) and bloods being off yet again we got a high risk result for T21 being 1:11. Obviously we are devastated to have to go through this yet again. We were offered that new blood test that screens for T21 so we had it then and there. Results apparently take up to 2 weeks as they have to send the bloods to the US for testing. Has anyone else here had that test done? We will then get a low or high risk number (just like the 12 week scan), but depending on the number we may also decide on an amino for a definite answer.
I am freaking out now, and so upset. I can't stop thinking about the whole situation and can't believe we have to do this all again.

We did get told that because Ds has a VSD this bub would have a 5% chance of having one too. So I am crossing my fingers that if something has to be wrong it will be a teeny tiny VSD that will fix itself.
Thanks for reading all of this. How are you other ladies holding up? X

Edited by Autumnmumma, 13 March 2013 - 02:03 PM.

#53 je14

Posted 14 March 2013 - 09:32 AM

Hi Autumnmumma - I'm sorry you're finding yourself in this forum topic again. . I can't imagine how you're feeling, being the second time you're having to go through the same thing.  Sending positive thoughts and prayers to you, your family and the baby.

Just an update on me, the Dr actually told me that the low Papp A results can also indicate problems with the placenta - which can cause problems with the baby's growth and development. But they rule out DS first before they start looking further into the potential placenta problems. It's been a difficult two weeks and still haven't reached a decision on the amnio. Hopefully we will decide soon and be at peace with whatever decision we come to.  The Dr actually said that we can do a new test to test for DS, which is just a blood test (so non-invasive) and it's about 98% accurate. However, it costs over 1k and we don't exactly have that kind of money lying around. sad.gif

Well, hope everyone else is doing as well as can be expected and baby's are healthy and growing.

#54 FarmBaby

Posted 14 March 2013 - 12:43 PM

Our second blood test came back with a 1:114 risk for DS. Does anyone know of a forum for parents of kids with DS? I want as much information from real people as possible.

#55 Autumnmumma

Posted 14 March 2013 - 03:26 PM

Je14- that is the blood test I had on Tuesday. I paid $750, I am located in Brisbane. Where are you?

#56 MrsBobby

Posted 15 March 2013 - 03:24 AM

Hi everyone,

I haven't posted in this forum for a while but I thought I share my experience with you. If you read back trough the group you will see that out NT scan came back with high risk due to my low Papp-A levels (0.42MoM). We had an Amnio and all was fine. Towards the end of my pregnancy my fundal height (which had always measured well ahead and we had been told several times we would have a big baby) started to not grow as much anymore but due it still being up front no one was too concerned (apart from me). Bubs turned out to be in breech position so we were referred for a growth scan at 37 weeks. The growth scan showed that our baby was quite small, on the 10th percentile. Still no one was too concerned (again apart from me as I had the low Papp-A levels and was worried about the placenta failing). Due to bubs being breech he was born last week via c-section at 38+5 weeks being only 46cm and 2675g (5lbs 14). He is perfectly healthy. What I am trying to get at is that there must have been something wrong with my placenta and i am glad bubs came when he did. Low Papp-A levels don't have to do this but they can so if your scan shows low levels then by all means towards the end of your pregnancy ask for a growth scan!! People keep asking me if my baby is a premmie and when I tell them he was actually full term they look confused.
As I said, he is perfectly fine but it won't hurt to keep an eye on it!

#57 je14

Posted 15 March 2013 - 09:49 AM

Autumnmumma - Oh really? I'm in Sydney. It's probably cheaper for me to fly up to Brisbane, get the blood test and fly back! Good luck with the results and hope the next two weeks goes quickly for you!
MrsBobby - congratulations on the birth of your baby boy! I'm glad that he is fine and healthy. And thank you for sharing your experience with us. All the best!

#58 bees-knees

Posted 15 March 2013 - 07:53 PM

QUOTE (FarmBaby @ 14/03/2013, 02:43 PM) <{POST_SNAPBACK}>
Our second blood test came back with a 1:114 risk for DS. Does anyone know of a forum for parents of kids with DS? I want as much information from real people as possible.

There is a forum which I have used for parents of kids with Ds, but there has not been a lot of activity on there lately; most of the group have moved to a Facebook chat group, however there is probably still a lot of info on there which might be helpful for you: http://adssn.forumotion.com/

Additionally, please feel free to PM me, and I'm more than happy to answer any questions.

Good luck with your pregnancy

#59 Mum_of_five

Posted 15 March 2013 - 10:40 PM

My chance was 1 in 11 my blood test came back abnormal, i had low Pappa-A i found out a few weeks latter at my hospital visit...but US was good with no markers at 13 weeks..T2 US showed no markers..My bubs was born 19/12/2012 healthy and no abnormalities.. I was worried even during labour hoping that the US were right.. First thing I did was look at her face and then I said a prayer of thanks to God:)

Edited by Mum_of_five, 15 March 2013 - 10:45 PM.

#60 sarum

Posted 18 March 2013 - 02:08 PM

Hi all

This is a new thing for me too. I Nuchal results sound quite similar to yours je31.

I had both the scan and bloods completed on the same day at 13 weeks due to problems two previous timse with a retroverted uterus. The scan showed NT of 1.7mm, CRL of 71.5 and a nasal bone which I was told are all encouraging signs however my bloods then threw me in to a 1;196 ratio for T21. I realise this is not that high and I am not sure why it is not higher with these bloods. I am currently 34 and will be 35 at delivery so thought I would be higher in the ratio department.

My blood screen showed hcg of 2.7 and Papp A of 0.66. I had a look at the results for my last daughter and that showed high HCg also-2.6 but also a high Papp of 1.6. That has made me a little more concerned about this pregnancy. I dont have the numbers from my first daughters scans.

We have booked an amnio for Thursday in Sydney ( travelling from Mid North Coast) and I have worked myself into a tizz about the whole thing. To add to that I have been extremely fatigued this pregnancy and low in iron so I am concerned this is a sign something may be a little different this time. To be honest, we are not sure what we will decide if result comes back positive. DH does not seem keen to continue with the pregnancy at all but I am not sure about it either way.

Would be keen to hear about similar results and how you dealt with it all and if there were all clears for T21 whether there were other problems with the pregnancy.


#61 je14

Posted 19 March 2013 - 07:37 AM

Hi Sarum - the ultrasound technician also told me that I had a retroverted uterus. But she still managed to get some good pics of the baby. If you read previous threads, a number of forum members have shared their experiences - so hopefully that will help you. It has certainly helped me understand the process a lot better. Good luck for Thursday. My prayers and thoughts are with you.

We have also decided to go ahead with the amnio. I'm still very anxious but at the same time, I feel like at least we've come to a decision. Regardless of the result, we have decided to keep the baby and we'll use the rest of the pregnancy to prepare and educate ourselves.

Again, hope everyone else is doing as well as can be expected and baby's are healthy and continue to grow.

#62 Cyaira

Posted 20 March 2013 - 02:00 AM

Hi all,

Just quickly coming in to post that I had my perfectly healthy and down syndrome free baby boy last week! He has passed all his newborn checks with flying colours and is just the cutest thing ever.

#63 MrsBobby

Posted 20 March 2013 - 02:11 AM

That's great news Cyaira!! Congratulations on your healthy little bubba!!!

#64 My4beautifulboys

Posted 20 March 2013 - 05:10 PM

Hi, Just thought i d post here, Im now 10 weeks pregnant expecting my 4th child. I had 3 boys within two years of each other, then sadly i had 3 unexplained m/c. And now im pregnant again, so really hoping for the best this time. I am now 41, and we have chosen to have the Nt scan along with the blood tests. We chose not to have them with our boys. Im feeling very nervous about the test, which ill be having early next month, as i know age isnt a good factor when it comes to the result.

I may need to have a Cvs if it does happen to come back a high risk, just for peace of mind. Has anyone just had the Nt Scan without having further testing?

Best wishes to you all in youre pregnancies and testing too.

#65 je14

Posted 25 March 2013 - 09:11 AM

That's great news Cyaira! Congratulations on the birth of your baby boy! biggrin.gif

my3beautifulboys - I know a number of mother's who did the NT screening and did not have any further testing. There are also some members on this forum that did the NT screening and received a high-risk result, but decided not to go ahead with the diagnostic test. I guess it's a personal choice that you and your partner would need to decide upon and figure out what is best for you and your family. All the best with the NT screening.

sarum - how did your amnio go and how did you feel afterwards? Did you opt for the fast FISH results? I have my amnio booked for Wednesday at the Centre for Women's Ultrasound in Westmead. I'm really nervous but trying to stay positive.

Hope everyone is doing as well as can be expected.

#66 Le-a

Posted 26 March 2013 - 06:30 PM

Hi everyone, I'm glad to find this group but I suspect like everyone else I'm totally freaked out to be here!

I got my NT results today, and although my radiology results are good (normal), my bloods have thrown a spanner in the works.

Apparently I have low PAPP A 0.400 IU/I or 0.297 MoM. (can anybody explain this to me? I can't get my head around how to read this result!).

So my adjusted risk comes back as;
1:3066 T21
1:225 T18
1:2796 T:13

I was referred for CVS in a weeks time, but the Dr I was referred to (in Perth, five hours away) rang me today and recommended I consider holding off until 16 weeks for amnio.

I'm terrified my baby has T18 and we will be faced with the most difficult desicion as to whether or not to end the pregnancy.

I'm terrified that baby's placenta has issues and that this will cause health problems for baby.

The thought of waiting months for tests/results makes me feel sick.

My first pregnancy with DS was so bloody text-book perfect, and with hindsight I was always so smug about it. I should have been more grateful...

Thanks for listening, I look forward to chatting with some mums who are/have been in the same boat.

#67 je14

Posted 27 March 2013 - 05:15 PM

Hi Le-a, I'm sorry that you're finding yourself in this group. I also found it so helpful to be reading other people's experiences.  I had similar results to you - ultrasound was fine, but the blood results put me in a high-risk category. My advice would be to speak to your OB/GYN or Dr and ask them to explain what the results mean.  It is only natural to be scared and I wish you all the best in your decision.

They didn't offer me the CVS, but they recommended I do the amniocentesis. I had my amnio this morning. To be honest, the actual procedure is quite quick (over in less than 60 seconds) but it is uncomfortable and I was really scared. So it felt longer than a minute. I can honestly say that I've never felt so anxious, nervous and scared all at once ever in my life. and I have had this feeling for the last few weeks and I know it will continue until I get the full results, which will be in a couple of weeks. It really takes a lot out of you.

Anyway, wishing all mother's all the best and hoping that everyone is doing as well as can be. Take good care of yourselves.

#68 annmarie17981

Posted 05 April 2013 - 11:46 AM

Hi everyone
I posted here a couple of years ago when I was pregnant with my daughter. I had a 1:59 risk of T21 with a nt measurement of 2.6 and bloods not what they should be. I was 29 at the time. I had a cvs and all was ok thankfully. I'm now 31 and pregnant again an am due to have my nt scan next Wednesday. I'm so worried that I'm going to come back high risk again. I'm actually expecting it for some reason. I think because it was my bloods I'm thinking there may be some kind of chemical imbalance there that may be causing it? The ob that did my nt scan last time said that if my bloods are off this time we can pretty much assume that it's something I just have. As for the measurement I'm wondering if it may be hereditary as my husband has quite a thick neck and my sil also got a similar measurement to mine when she was pregnant with my husbands brothers daughter. We've been wondering if maybe it's something in their family? I don't know. I'm just grasping at straws I guess. From what I've read online it seems that women who have had bloods off the first time often have it happen in subsequent pregnancies.
Autumnmumma - Do you have your results from the blood teat yet? Your situation sounds almost the same as mine. Do you mind me asking how old you are? Do you think maybe it just may be some kind of imbalance in your bloods that may be causing it?? I know you said your son had a small hole in his heart and that may have influenced your results and my daughter also has a very minor heart murmur which wasn't picked up until she was one so that may be it also?
I guess my question is does anyone know or have any theories as to what are the chances of having a high risk result second time around?? Any information or experiences will be a great help and help to ease my mind until next week!!

#69 FarmBaby

Posted 08 April 2013 - 02:48 PM

I have just received my IGeneScreen results and have a 1:20 000 000 risk for DS, revised from 1:114. I have breathed out for the first time in a month. I am in SA and thoroughly recommend this test to anyone else in SA, the $$$$ are totally worth it.

#70 Nervousmama

Posted 09 April 2013 - 09:53 PM

Hi ladies
I've been reading your posts with interest since I got an alarming result at my NT scan on Friday. I thought I'd add my story for future Googlers.
I'm 30 yo with a healthy 2 yo boy. I'm 13 weeks pregnant with my second after having a miscarriage last year.
I had my NT scan last week and these were my numbers:
Beta HCG: 2.167 momPapp-A: .303 momNT: 1.8 mm
Risk of Downs came back at 1:45.
It was recommended I have a CVS which I did yesterday - it was uncomfortable but not unbearable. Nothing like someone telling you not to move a muscle to make you get the jitters! Anyway my FISH results came back this afternoon - clear.
I have to wait 2 weeks for the full report but relieved at the preliminary result. The 4 days of not knowing what was going on felt worse than anything. Anyway, fingers crossed for an uneventful pregnancy. It will definitely be the last for me after this worry!!
Will post with any updates but thought it useful to add another good news story for ladies in a similar boat.
All the best to everyone waiting for their results.

#71 WorriedMum2013

Posted 11 April 2013 - 04:17 PM

Hi ladies, I'm sad to have to join this group, as you all were I'm sure. I'm looking for support and advice, im distraught with my high risk NT results. This is my story so far. I'm 25 years old, mum to two boys, Isaac 4 - who was born at 35 weeks with neonatal diabetes, insulin dependant, spent his first 7 weeks in the NICU. Felix, DS2, 2 yrs, always small for dates for unknown reasons, born at 2kg at 37 weeks, healthy but tiny, still a small kid. Both boys low risk NT results.

This pregnancy I have been given a 1 in 74 odds, :-( due to very strange blood work.

NT - 1.4mm
Nasal bone present
(Scan was fantastic - so next part a huge shock and disappointment.)
Hcg - 1.8 MoM
PAPP A -0.19!!  (Not a typo.)

I'm extremely worried. I fear the worst, my risk is for downs. Others were still low risk. I just have such crap pregnancies, so much negative things happen to me, so I feel like I'm  going to get a positive result. If I do, because of my diabetic son who already requires a lot of extra time and management I wouldn't continue the pregnancy. I'm 13+6 today and have amnio booked on the 29th April.

I feel so sad upset and disconnected, I feel terrible that I may have a termination at 17 weeks, it makes me physically sick. I want to remain positive, but I'm struggling. I need some support :-( My hubby is so positive and thinks all will be clear and fine, and I need his positivity, but I'm struggling.

So pleased to read those who have recieved good news. Xox

#72 Nervousmama

Posted 11 April 2013 - 05:44 PM

Hi Worriedmum2013 - sorry to see you're in this stressful situation too.    
I just wanted to say that after the whole weekend stressing about my situation, I spoke to my OB on Monday and asked what my blood levels were in my first (low risk) pregnancy. Turns out they were pretty similar to what my numbers are now. Pappa-a was a little bit higher (but still 'too low') and beta HCG was even higher than this time around. The only difference really has been the nuchal fold measurement (.9mm last time and 1.8mm now) and the fact that I'm two years older.
So it does seem to me that some women just have different levels of hormones during a normal pregnancy. My OB described the 12wk NT test as a "blunt instrument ... A bad test, but the best we've got". So scary numbers may just be normal for you but just one slight variance between pregnancies is enough to throw your risk figures out (eg the different nuchal fold measurement in my case).
I also find pregnancy a really stressful time and won't do it again. Now that I've had clear CVS Fish results, I'm petrified of miscarrying for (hopefully) no reason. I was able to find out that I'm having a girl but to be honest, won't be able to enjoy the news until I get my full report and risk of miscarriage has passed. My husband has pretty much now forgotten this whole sorry incident, confident that it willbe fine but it's different when it's happening inside your own body.
I find it bizarre that you're always told "every pregnancy is different for every woman" but they have this one-size-fits-all test that scares the bajesus out of everyone who gets stuck in the net.
Wishing you all the best for the 29th. I'm sure you'll have many sleepless nights till then (as i am) but fingers crossed for good news for you. Please update us with any news x

#73 WorriedMum2013

Posted 12 April 2013 - 11:11 AM

Hi NervousMama,

Thanks for responding. It means a lot that you did, such a lonely and isolated position this is to be in. I'm very happy your CVS was clear, much less to worry about, but of course even if I get the all clear from the FISH results I too will worry if they end up finding anything else just rarer. And I get rare - I had an .0000005 chance of having my first son born with his condition, but there you go, I was that 1!!

I just want the time to pass, two weeks and 3 days til my amnio. Forever!! And now I'm no longer excited about my pregnancy, wishing I wasn't showing because looking and feeling pregnant makes me feel worse. I'm now distancing myself from my baby and pregnancy and I hate that! I just want to enjoy this time but now I cant.

I would love to hear what happened to some of the other ladies that posted?

My small comfort is that most stories that I've come across, even with as bad bloods as myself have come away with clear amnios. So I'll cling to that and hope that God will spare me and my baby.

When do you get your full results in NervousMama?

(Ps, I do love how the men folk can be so oblivious to how traumatic this for us, which in a way it is helpful to me, I need one of us to be optimistic!

#74 indi17

Posted 12 April 2013 - 01:30 PM


looks like we are in similar boats at the moment worriedmum2013. I am waiting to have an amnio on the 22/04 as my results came back 1:284 for tri 21. To say I was shocked was an understatement as my previous two pregnancies I have been low risk.

My risk also seems to be related to my bloods and my PAPP-A result of .33 as the scan was otherwise all good, NT 1.7mm and nasal bone present.

My Ob seems to think everything will be fine but I have been stressing for the past couple of weeks and still have 10 days until the test and who knows how long for the results sad.gif

Goodluck original.gif

#75 WorriedMum2013

Posted 12 April 2013 - 07:32 PM

Hi Indi, sorry that you find yourself here. I wish we didn't need each other for support in this difficult situation. At least your papp a is the only thing that is triggering your higher than average result.

It's likely things will be just fine for you. I've been trawling the net for situations similar to mine and no matter how many positive stories you read, its not you/me so it doesn't bring real reassurance.

I feel like every day drags and is a real struggle, its always on my mind. I'm trying to trick myself into thinking it's all ok and this nightmare won't end in the worst way.

*hugs* your not alone and I'm thankful I'm not alone for this journey.

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