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Support Group for Hi Risk NT Results#38


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110 replies to this topic

#1 ~A2~

Posted 10 April 2012 - 07:43 PM

Hi all

New thread time

Previous thread

Regards

Ali

#2 bentkitty

Posted 11 April 2012 - 05:02 PM

Hi ladies, unfortunately I have to join you here. Just had my 12 week scan and results came back 1:130 for DS (other trisomies fine). The scan was perfect text book and wasn't really expecting this call today, it was my bloods and my age that screwed things up for me this time.

Age: 39 (background risk 1:110)
Scan: NT 1.3mm, nasal bone present, no soft markers, baby measuring a week ahead of dates, 169 BPM. The scan took almost 2 hours in the end (i had to keep going back in as the baby was not lying in a favourable position for the NT measurement to be taken) so I am confident if there was anything that should have been picked up, they would have seen it.

free beta HCG: 2.1

papp-A: 0.6

So I guess not massively surprised to find myself here given my age, but still bit overwhelmed by it. I have a 14 month old and my background risk was 1:150 with him but reduced to 1:1700 after the 12 week scan. Was sort of expecting the same this time, especially after the good scan..

Anyone heard of a theory that girl babies tend to have higher beta HcG? No idea if that's just a myth or not. Also slightly worried that my low papp-A could be an indicator of pre-eclampsia. I developed PE at 37.5 weeks with my first and needed an emergency c-section. My papp-A was higher with him too (0.8).

Anyway will go in for genetic counselling soon and figure it out from there...


#3 myli2lsnowflake

Posted 11 April 2012 - 05:23 PM

Hi Bentkitty

i'm i'm sorry to hear about your results, try to stay positive though. reading your post it sounds very similar to mine ,  i have 1:28 for T18 as well as 1:187 for DS but like you very good ultrasound.
i have found that sometimes low PAPP-a can be linked to problems with placenta not working properly  and not always indication on problems with chromosomes. and yes i also came across that girls have higher HCG.
for me this is a third pregnancy and looking back i had issues with my son, got high flows among other things and had to have his 6 weeks early, 9 years ago they didn't have the blood tests only the ultrasound but considering hes 9 now all ended well.

its good that you are seeing someone about genetics it should help you with any decision you will make, we opted for an amnio due to the t18, make sure you  ask a lot of questions and trust your instincts when making the end decision..... i hope it all goes well for you hun......will be thinking of you ......










Edited by myli2lsnowflake, 11 April 2012 - 05:24 PM.


#4 bentkitty

Posted 11 April 2012 - 05:54 PM

Those who had 2nd trimester bloods done before deciding on whether to go for an amnio or not, when did you have them done?

#5 myli2lsnowflake

Posted 11 April 2012 - 06:01 PM

my bloods were done at 11 weeks 3 days and my amnio is on 24th of this month....... the doctors suggested we do have it done due to the high risk of T18......... i think due to the severity of T18 i really need to know at this point so i'm going to go ahead with it.

#6 bentkitty

Posted 11 April 2012 - 07:22 PM

QUOTE (myli2lsnowflake @ 11/04/2012, 05:31 PM) <{POST_SNAPBACK}>
my bloods were done at 11 weeks 3 days and my amnio is on 24th of this month....... the doctors suggested we do have it done due to the high risk of T18......... i think due to the severity of T18 i really need to know at this point so i'm going to go ahead with it.


sorry i didn't mean the standard bloods at the 12 week scan, the second trimester bloods measuring AFP and other blood markers so the risk is recalculated.


#7 myli2lsnowflake

Posted 11 April 2012 - 07:26 PM

they didn't even give me that option they just  said i should have the amnio done. at the time i was so devastated i took a day to think about it and opted for the amnio. my doctor said that apparently 2 different doctors looked at the results before they told us............ maybe i should ring them and request another set of bloods in the second trimester

#8 bentkitty

Posted 11 April 2012 - 07:41 PM

QUOTE (myli2lsnowflake @ 11/04/2012, 06:56 PM) <{POST_SNAPBACK}>
they didn't even give me that option they just  said i should have the amnio done. at the time i was so devastated i took a day to think about it and opted for the amnio. my doctor said that apparently 2 different doctors looked at the results before they told us............ maybe i should ring them and request another set of bloods in the second trimester


My OB was also leaning towards an amnio at 16 weeks but she did mention this as an option before I make the amnio decision. I think the bloods are done at 15-16 weeks so I am definitely asking for them. We may still go ahead with the amnio if the risks come back lower though, I guess I will make that decision at that point... At my age DS is a genuine worry, good NT scan or not.

Here's an article about the second tri blood testing and how the results are combined with the 12 week screening to give a recalculated risk.

http://www.babycenter.com/0_multiple-marke...reening_1487.bc

Just ETA, if you are definitely going to have an amnio regardless of what these tests say, then there may not be much point to this blood test for you. Also I am not sure if Medicare would cover this blood test (or to what extent it would cover it).

Edited by bentkitty, 11 April 2012 - 07:44 PM.


#9 myli2lsnowflake

Posted 11 April 2012 - 07:51 PM

thank you so much for the link, i've been googling a lot but haven't come across that particular article.....

i wish my OB was more forthcoming but i think she was in shock a bit, this was an IVF pregnancy and the embryo apparently looked perfect, i know it probably means nothing, but even my Ivf Doctor was shocked at my odds especially for Edwards Syndrome based on age alone (35). What can anyone do though, bloods messed everything up. I will certainly call them and get the bloods done b4 my amnio date. thanks once again.
I"m guessing you also have another set done before you decide on an amnio...... i hope your results will decrease your risk and you wont have to go through an amnio......

#10 abstermummy

Posted 11 April 2012 - 08:05 PM

Hi Guys,

just updating you all on my progress from the last group number 37.

had my amnio today, and it a bit painful but nit as bad as I expected. baby still measuring to the dates and all looks ok. Just need to wait for FISH results now...... Feeling a bit sore and resting for the next couple of days.

take care all xx

#11 bentkitty

Posted 11 April 2012 - 08:11 PM

Mylilsnowflake - isn't it common for bloods to be screwed up with IVF pregnancies though?

Abstermummy - glad that's over for you, good luck with the results, hope you get them tomorrow!!


#12 myli2lsnowflake

Posted 11 April 2012 - 08:17 PM

Hi Abstermummy,

Glad to hear the amnio went well and that the baby is looking good......All the best for your FISH results hun....Take Care.....

#13 myli2lsnowflake

Posted 11 April 2012 - 08:31 PM

I've heard that yes it is possible and i told the lady that started my ultrasound it was an ivf pregnancy and what drugs i was on unfortunately we had to stop the ultrasound for a bit as the baby was moving like crazy and we couldn't get the nt measurement, in the brake i went and had my bloods taken, when i came back a different person finished my ultrasound, now when i got my results  i have asked the question if that information was passed as the report from the pathology does not mention it , but do you think anyone will admit if they didn't........thats my confusion , baby was measuring ahead of dates , very mobile inside good measurements and yet such horrible results...... i really am hoping its the stuff up with the bloods

#14 abstermummy

Posted 12 April 2012 - 08:26 AM

Hi myli2lsnowflake

That's frustrating. I found out yesterday that the second lot of bloods I had taken didn't get reported as my doctor did not give clear instructions!!!

I have learnt that you need to push, chase and question everything as each patient is just a number.

Good luck x

#15 myli2lsnowflake

Posted 12 April 2012 - 09:11 AM

Hi Abstermummy,

sorry to hear about the bloods not being reported, you right i think to the medical profession we are just a number.

How are you feeling today, i hope the recovery is going well and you are taking it easy...

All the best for your Fish results.......original.gif

#16 Bec234

Posted 14 April 2012 - 01:20 PM

So i had my amnio done yesterday.. feeling a bit fragile now but all seems to have gone ok.
They told me 2-3 weeks for results!?? Is that normal for it to take so long.. i am sure i was told 2-10 days when we were talking about getting the amnio done.. sad.gif

Edited by Bec234, 14 April 2012 - 01:21 PM.


#17 belindarama

Posted 14 April 2012 - 01:30 PM

If you don't have the fast tracked test (the FISH people have referred to) it does take that long. They have to grow the cells enough to be able to examine them. If you have the fast track test they can give you a preliminary result in a day to two and then confirm the result a couple of weeks later.

My first amnio I did not have the option of fast tracking and it was the longest two weeks of my life. All turned out ok though. I was in 1:90 for that pregnancy.

DS2 I got the results the next day with a confirmation two weeks later. I was 1:89 that time. All ok with him as well.

#18 Libertine

Posted 14 April 2012 - 02:58 PM

Hi ladies

Just stumbled across this group. We had our Nt scan on Friday. Scan was great, nasal bone present, baby looked great (measured three days ahead) and nt was measured at 1.6. The sonographer was really positive, said it was a great scan,nothing to worry about etc. Then we looked at the combined score :-(

The bloods were terrible for all, worst was 1:16 for downs. However as the ultrasound was so good my combined risk is 1:200. Now we were shocked by this but still thinking that 1:200 is not bad odds until we saw the OB who confirmed we are high risk and took it very seriously which has now freaked me out completely.

My DH asked if we could do the bloods again as we have has stuff ups with bloods before and I had a really bad migraine the night before they were taken the first time. Des anyone know if that may have effected the results? If my migraine was resulting from say a virus. We get the results Monday.

Also my free beta hCg was 1.06 mom (which I believe is not far from normal?) but my PAPP-A was 0.27 mom. Can anyone shed any lighten what this means?

Any advice would be much appreciated. thanks.





#19 sarkazm76

Posted 14 April 2012 - 03:13 PM

Libertine the only thing I can see from your tests is that your PAPP-A is very low.  They like both this and the BCHG to be around 1.0.  So your physical scan was good and your BCHG was good, just you PAPP-A.  Other factors would be your age and some lifestyle things as well of course.  Low PAPP-A can be indicator of a poor performing placenta and if that was the case they would monitor you and monitor bubs growth a little more carefully throughout.



#20 myli2lsnowflake

Posted 14 April 2012 - 04:11 PM

Hi Libertine

Firstly i'm sorry you are finding yourself here hun but try not to worry, i know its easier said than done.

Well i don't know if Migraine may affect the bloods, i do know that dehydration may affect them, Papp-a may also be affected but twin pregnancy or Ivf Pregnancy due to the drugs taken. Over all i came a lot of cases where bloods have given a false positive. Due to bloods i currently am in a place where my risk is 1:187 doe T21 and 1:28 for T18. i'm trying to Stay positive as like your scan mine was really good .......
Also low Pappa may mean that placenta is not working properly thus closer monitoring may be required. i hope this helps a bit .

#21 myli2lsnowflake

Posted 14 April 2012 - 04:14 PM

QUOTE (Bec234 @ 14/04/2012, 01:20 PM) <{POST_SNAPBACK}>
So i had my amnio done yesterday.. feeling a bit fragile now but all seems to have gone ok.
They told me 2-3 weeks for results!?? Is that normal for it to take so long.. i am sure i was told 2-10 days when we were talking about getting the amnio done.. sad.gif


From my understanding so called Fish results could be give as soon as 2 days later with the full set ready in 2 weeks. Maybe give them a call on monday and see if they would have the Fish ones to give you some peace of mind. All the best for the results

#22 Libertine

Posted 14 April 2012 - 04:41 PM

Thanks Ladies.

My age was a factor too as I am 36 so my background risk was already 1:209.

Really appreciate the replies, it's been a lot to take in. It doesnt help that I am am huge catastophisier so hearing from others and getting some perspective really helps.

Thanks again.

#23 abstermummy

Posted 16 April 2012 - 09:12 AM

Hi All,


I have some sad news. We lost our fight on Friday after finding out the results to our Amnio. I am totally devastated and feel empty. The hospital have been very supportive and thankfully did not make me go through a labour. Our baby was too beauiful for this world.

I wish you all the very bestx
xxxxx

#24 myli2lsnowflake

Posted 16 April 2012 - 10:14 AM

Abstermummy

i'm so sorry to hear about your results, my heart goes out to you and your family........

#25 Bec234

Posted 17 April 2012 - 10:10 PM

So sorry to hear  abstermummy.. Thinking of you and your familiy in such a hard time.. xox




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