[keedensmum]

Hello,
I had my NT scan and bloods last week and at the ultrasound the technician told me the baby looked gorgeous (hard to tell at 12 weeks but anyway!) and that there was minimal fluid behind the neck. I got a phone call from my obstetrician this morning saying that my overall risk for Down Syndrome was 1 in 140, I am 37 years old and I know at higher risk and I know it isn't 1 in 4 or something but I wasn't expecting that. This pregnancy is an IVF pregnancy and I had really high progesterone for up to 10 weeks after I conceived (and to tell the truth I still don't know if it is has gone down as they stopped testing) and I have been reading on the interent that with IVF the high risk results are not actually acurate as the ivf can affect the results (hormone stimulation for egg production and higher hcg levels) and that some studies have shown a much higher false positive rate in ivf pregnancies and one article even said this hormone screening for Down Syndrome is not recommended in ivf pregnancies. Now I am confused as my obstetrician said any risk higher than 1 in 300 they recommend an amnioscentisis and she is telling me it would be a good idea but now I am concerned my results have come through like this as it was ivf. My ob said there is only a small amount of fluid behind the babies neck on the scan too. Has anyone any information or experience with ivf and this screening test? Thanks in advance

[tintin22]

hi Keendansmum, sorry you find yourself here and its natural to be confused. I was not in the same boat as you as we had IUI but I did read some of what you were talking about with the IVF and the fluid behind the neck. We had twins and one had fluid behind the neck however we also read that with twins you shouldn't take the blood test into account because you do not know which twins is producing what result so the bloods are not accurate and can distort the risk score. Our DD had a risk score of 1 in 15 due to two cystic hygroma on her neck - which consequently disappeared by week 20. She was born on Thursday and does have Downs and some significant heart problems - none of which showed on scans. I suppose my advice to you is - if you don't plan on acting on the outcome of a CVS or amino then it doesn't really matter if IVF affects your results - you just don't do any further testing and prepare for what ever outcome you get. I suppose all I am saying is that test don't alway tell you the truth so whether IVF or not you have to take them with a grain of salt. A scan a month before the twins were born said my DD was 2kg - well a month later she was born and was 1.4kg - they expected her to be 2.5kg at that point. The question of an amino is really only if you feel you must know or if you intend on acting on the result - you do not need to ahve the test - we chose not to as we didn't want to risk losing either twin. PM if you want to chat - not sure if I have help at all - sorry!

[Justaduck]

Hi everyone just thought I would update to give hope to those with hugely abnormal blood results.
I am 24 (was 23 when I was 12wks along) so from my age should have had a 1:1100 risk of down syndrome. My NT scan itself looked perfect, but my bloods were through the roof. The HcG was 6.01 MoM, and I think the Pappa was 0.83. Those blood results put me at a 1:207 risk for DS. We decided not to do the amnio, but at that time I was unaware at how huge the hcg was up.
Our baby girl was born on Thursday and has does not have down syndrome. We had a chromosomal blood test done just after birth for our peace of mind (get the results back tomorrow).
I hope that in sharing this it can help some of you with high blood results have some hope that their bubs will be fine and healthy when born.

[keedensmum]

Hi, just wanted to give an update. My specialist and I decided after the 12 week testing result gave me a risk of 1 in 140 to wait and do 2nd trimester testing and have an integrated result. (meaning they use the results of test at 12 weeks and 16 weeks to give a new overall risk factor) AND just got a call that the risk factor for me is now 1 in 950 so the specialist advised more risky to do an amnio then the risk of not doing it, as my papa hormone was 0.27 and he was concerned I might miscarry with an amnio, but no need to worry about that now!
Apparently they don't usually offer the 2nd trimester testing (in Wollongong anyway) but given my papa hormone was low the specialist thought it was worth doing and I am glad we took this option as the risk is greatly reduced. Best wishes to everyone xo

[Bec234]

Hi Ladies..

So i am happy to find this forum here as its nice to talk to people that are or have been through the same thing..

So i am 24 and pregnant with our second bub and i am 15 weeks. Our NT results came back to put bub at High Risk of DS 1:219
Soooo wasnt expecting that!
Good news was the neck measurement was fine its just my blood test that came back wrong.

Anyway.. isnt it amazing what you think you would do if ever faced with this and what you ACTUALLY end up doing/feeling can be so different..
We have decided to get the amnio done. At the hospital they cant get me in untill i am 17w3d Which will be Friday 13th April (the day is lucky for some right!!??)

So now is the sit and wait.. gahh... Not really asking anything of anyone here.. just wanted to post..
Thanks for reading..

[abstermummy]

Hi and it's been positive to see such great outcomes from nervous beginnings.

I have a 2 1/2 year old and we are now 14 weeks pregnant with ur second.

My first I has a high risk result of 1:150 with a low Papp-a of 0.15 MoM bring this result. We chose not to have an amnio that time around after doing much research and deciding that we'd just wait and see.

However last week I got my NT results back for this pregnancy and the results were even worse which I did not expect.

1:2 risk of DS
1:58 risk of trisomy 18
Papp-a 0.08 MoM
hCg 1.86 MoM
Nucal Measure 1.8mm

Worst thing was my Husband was away with work and I had to take my son into the medical centre with me oblivious to what the results were and completely broke down and scared him too!! poor thing.

I was in pieces for the first 3 days and every time I thought or spoke about it I just broken down and was worried I was effecting the pregnancy even further.

Amnio book in for next week. I am hoping that it's just something that I am prone to with low Papp-a and unsure what we will do if the results come back negative.

Can't focus on work so have taken the time off until I get the FISH results - also spending quality time with my son which has kept me positive as he is so perfect.

Oh well - fingers crossed - just wish there was something they could do to stop the wait as It's so mentally draining and has put me into a state of depression. I don't even talk of the new baby anymore for fear of building up too much hope and feel disconnected with this pregnancy.

Anyone had simular results they want to share??

[roses99]

It's been a long time since I've been in here, but just wanted to wish you all the best abstermummy.

Like you, we had a high risk result with our first (1:134 for DS) and, like you, opted for no further testing. DD was born safe and well almost two years ago.

I do remember there was someone, or maybe more than one person, here on these boards who had a 1:2 risk factor for Down Syndrome and ended up having a healthy baby.

If I were you, I think I'd be terrified as well. BUT, I would be taking heart from the nuchal measurement. Personally, I'd rather have dodgy bloods than a dodgy scan, because there are many things that can affect the blood results. Were there any other soft markers on the scan? Could they see a nasal bone? Could they see the cord insertion?

We very much came to peace with the possibility of our baby having Down Syndrome. With early intervention these days, the outlook for a child with DS is excellent. Many young people with Down Syndrome will grow up to live relatively independent lives. You probably know all that, having been through all this before. Trisomy 18, on the other hand, is a much scarier proposition. But you'll cross that bridge if you come to it. And hopefully you won't!

I'll be thinking of you.

[wallofdodo]

I have been there, 1:2 for T21 & T18. But just to reinforce what the PP said the fold measurement was over 7mm and there was no nasal bone present.

The measurement on your NF is small.

Good luck it is such a tough time. Hug your little boy a lot, that got me through it.

This post has been edited by wallofdodo: 04/04/2012, 02:03 PM

[abstermummy]

Thanks wallofdodo and roses99 for your messages of support.

Yes scan was perfect. good heart beat, nasal bone and cord attached - also all limbs looked ok. So I am hoping it is an issue with the placenta as before. Just wish there was something you could take to fix it.

I'll let you all know how I go next week. x

[myli2lsnowflake]

hi All ,

i'm new to this thread but i'm so glad that i have found this, reading your stories is giving me some hope. last week i had my Nt Scan and came high risk for DS 1:187 and Edwards 1;28. My hcg was 0.4 and my papp-a was 0.15.i've cried my heart out now i'm just numb trying to be strong as we have other kids who need us. i just feel so lost and alone as no one we told has even hear of Edwards. i'm booked for amnio on the 24th but it seems so far away and then the wait for the results....... i really dont know how i'm going to make it, i know my odds are not good but. i have to have faith that my little snow flake will be fine.... this was an ivf pregnancy, we waited 3 years for it and this was the last this we expected............i'm so sorry if i'm venting ................is there some one there who can explain a bit what it all means......

This post has been edited by myli2lsnowflake: 06/04/2012, 06:09 PM