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Support Group for Hi Risk NT Results #40


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#1 ~A2~

Posted 01 August 2012 - 02:18 PM

Hi all

New thread time

Previous thread

Regards

Ali


#2 wendla72

Posted 01 August 2012 - 02:29 PM

HOORAY!!!!!!  Finally after waiting all morning I had a call at 1pm today to say our little boy is in the clear.  Possibly the longest morning of my life but we are so relieved.  I hope good news travels to all of you.  Thankyou for being there.  biggrin.gif

#3 sarahbn87

Posted 01 August 2012 - 06:31 PM

Great news wendla72! Congrats biggrin.gif

#4 4Littleloves

Posted 02 August 2012 - 01:20 AM

Yay!!!! Congrats wendla72 !!! Fantastic news for you and your family xxx

#5 AliGeo

Posted 02 August 2012 - 07:34 AM

Excellent news about your little boy wendla72!!!

#6 AliGeo

Posted 09 August 2012 - 08:07 AM

Well had out amnio Tuesday and got the results yesterday afternoon. Both babies are in the clear!!! So happy to finally get some good news. Thanks for the support in this group.

#7 sarahbn87

Posted 09 August 2012 - 12:58 PM

Yay AliGeo! biggrin.gif Great news. Hope it stays that way! original.gif

#8 mamamaree

Posted 15 August 2012 - 08:49 AM

Hi, Im new here...not too sure what to write so ill write it all!

Had my 12 week scan on monday and yesterday the doctor called me in as im deemed high risk.

I do not really understand why i am deemed high risk, and unfortunately ive since thought of questions i need answers to.
Ive got an obstetric appointment on tuesday to talk about having the amnio done.
Right now im just falling apart..i just cant cope..i am constantly crying and cant seem to get it together, and have hardly slept.sad.gif
Its not like he has told me the baby does have it, just that im at higher risk of having the baby have it..but i cannot see any positives in this.
Tuesday just seems like a long way off to get answers.
We have our wedding in 24 days, and i cant even focus on that and its only been a day since we got this news!

Gestational Age, 13 weeks 0 days
Fetal heart action present, frequency 147bpm.
CRL, 67.6mm
Nuchal Translucency, 2.2mm
No obv fetal anomaly.
Free Beta HCG, equivalent to 1.299 MoM.
PAPP-A, equivalent to 0.510 MoM

Adjusted risk for trisomy 21, 1:219
"                               "18, 1.11264
"                               "13, 1.22652

Then it says Unfavourable risk assessment for trisomy 21. Nuchal fold thickness of 2.2mm is just above the 50th centile. Obstetric opinion recommended.

Im also 35, will be 36 soon...im wondering how much my age has got to do with this as the NT doesnt seem that bad to me..

#9 sarahbn87

Posted 15 August 2012 - 11:56 AM

Hi mamamaree,

So sorry to hear that you are going through this! I would say (I'm not a doctor, but just from what I have learned...) that they are concerned about your blood test results, because the NT measurement is less than 3 mm. I wonder if they saw a nasal bone present? I'm assuming they must have if they said there is no obvious anomaly present. So that's something to be positive about! I know it's easier said than done, but try not to stress too much about it. After I was given a 1:5 T21 risk, I couldn't concentrate on anything else for the next few days after that, and they were pretty teary days! I was told my baby may not survive much longer in utero, if it's not Down's syndrome it's another chromosome issue or a heart defect, etc. They always prepare you for the worst, but it's important to hope for the best.

Anyway, had the CVS done and everything came back normal...I'm 19 weeks now and so far we have not been able to see anything structurally wrong with the baby either, so you just never know! The NT testing and bloods have to be done in a very specific window of time, and if you just happen to get it done at the wrong time it can skew the results. There are so many explanations for what could be causing the unfavorable results, and sometimes there is no explanation at all and things just work themselves out.

Have you decided if you are having the amnio done or not? I know Tuesday seems like it is so far away. The results of the CVS wouldn't have changed our minds about whether or not to continue with the pregnancy, but it was so good to have the peace of mind once the results came back. But it's definitely a personal decision and totally up to you and your partner. I wish you the best though, and be sure to rely on your support system during this time...and keep hoping for the best! original.gif Take care and keep us updated!

#10 wallofdodo

Posted 15 August 2012 - 12:14 PM

Yes your age does come into it. The age risk for 36 (which is what you will be when the child is born) is around 1:294 (from the scale that I commonly refer to.) So you have come in slightly higher.

I would also ask about soft markers, nasal bone? Was it detected?

Speak to your ob. Can you ring and get an earlier appointment? You could also ask to speak to genetic counselors. They are very good at explaining the risk ratios as well as explaining the tests and options.

ETA good luck. The news can really take you by surprise.

Edited by wallofdodo, 15 August 2012 - 12:16 PM.


#11 PeanutButterTurtle

Posted 15 August 2012 - 05:54 PM

Hi guys,

I'm popping my head in too! I had my NT scan and bloods done last Tuesday (12w1d), and got a phonecall from the hospital on Monday afternoon saying I had an increased risk of Downs - 1:50! To say we were shattered is an understatement.

My age automatically put me at low risk, as did the scan. The NT measurement was fine at 1.3mm and from memory they detected a nasal bone, but my bloods weren't brilliant. My PAPP-A was 0.6MoM, and my bhcg 4.2MoM, so that well and truly tipped me into high risk - the lady I spoke to on the phone said it was more the high HCG they were concerned about.

I've got my first hospital appointment next Tuesday, then an appointment with a genetic counsellor on the 27th, and I think they said they do the amnio on the same day - the risk of downs far outweighs the risk of miscarriage, so we've decided to have it regardless. We won't terminate, I just want to know so I can be fully prepared. But hey, on the upside we get a definite answer to the pink or blue questions, no trying to guess from scans biggrin.gif

We're going to have a chat with the local Downs Society and see if there's anyone that would be willing to have a chat with us, as both DP and I have experience with people with Downs in a healthcare setting, but not a day to day setting and I'm sure it will be much different to what we imagine it will be. Realistically it's only a 2% chance that Yoda will have Downs and a 98% chance that everything will be fine, so we're planning for the 'worst' yet hoping for the best. I was a mess on Monday and yesterday, but feeling a lot more positive today. As I heard someone mention in another thread, if Yoda has Downs it may not be society's 'perfect', but as long as it's our perfect, that's all that matters!

#12 PeanutButterTurtle

Posted 15 August 2012 - 06:05 PM

Oh, and just coz i can original.gif

Yoda!

#13 mamamaree

Posted 17 August 2012 - 04:45 PM

I tried to get an earlier appt but no luck, they only run them here on tuesdays.
I will have the cvs done as im sorry if this offends but i would terminate and would want it done before 18 weeks.
This is the most horrible thing ive ever been through..ive managed to stop crying and am sleeping better..but i am stressed out.
I tried to find what my hcg and papp-a levels should be normally but i couldnt find anything and i dont know..if i research and read other peoples papp-a numbers, theyre always so much lower than mine..i just dont know sad.gif

#14 mamamaree

Posted 17 August 2012 - 04:52 PM

Oh and she didnt seem to be looking for a nasal bone...i didnt see it on my scan disc that she had been looking for it...but the doctor said i have a healthy baby, its just this risk being higher...

#15 bees-knees

Posted 17 August 2012 - 11:13 PM

Midstudentcatie:
I just wanted to say that I have a 3yo with Down syndrome, and if you wanted to chat (or if anyone here did), please feel free to pm me.
Best of luck.

#16 sarahbn87

Posted 19 August 2012 - 10:26 AM

midstudentcatie - Good luck on Tuesday, and with your amnio/genetic counseling appt. I found my genetic counselor to be really helpful and enjoyed going to see her. But also really glad that I don't need to anymore Tounge1.gif lol And yes, finding out the sex earlier than you normally would have is quite fun too original.gif You have such a cute little bub! Thanks for posting the picture. Hope all goes well!

mamamaree - it really is a horrible experience, and there is no easy answer for anything during this time. No offense taken by your decision - you have the right to do whatever you feel is best, and hopefully your family, friends, etc. will respect that as well, because the last thing you need right now is for your support system to be throwing you negative vibes. I really hope your CVS goes well and you don't have to worry about that though original.gif

From what I understand about the PAPP-A and bHCG (as my genetic counselor explained it to me), they don't as such give you a measurement as they do an "average," so the result you want for both of them is 1.0, which is pretty much "perfect" on the scale that they use, so however far away your result is from 1.0, they then calculate your risk of some kind of issue. If that makes sense. lol Maybe someone else will be able to explain it a bit better. It makes sense in my head, but probably not when I type it. lol Anyway, good luck with everything!

#17 mamamaree

Posted 20 August 2012 - 10:41 AM

QUOTE (sarahbn87 @ 19/08/2012, 09:56 AM) <{POST_SNAPBACK}>
midstudentcatie - Good luck on Tuesday, and with your amnio/genetic counseling appt. I found my genetic counselor to be really helpful and enjoyed going to see her. But also really glad that I don't need to anymore Tounge1.gif lol And yes, finding out the sex earlier than you normally would have is quite fun too original.gif You have such a cute little bub! Thanks for posting the picture. Hope all goes well!

mamamaree - it really is a horrible experience, and there is no easy answer for anything during this time. No offense taken by your decision - you have the right to do whatever you feel is best, and hopefully your family, friends, etc. will respect that as well, because the last thing you need right now is for your support system to be throwing you negative vibes. I really hope your CVS goes well and you don't have to worry about that though original.gif

From what I understand about the PAPP-A and bHCG (as my genetic counselor explained it to me), they don't as such give you a measurement as they do an "average," so the result you want for both of them is 1.0, which is pretty much "perfect" on the scale that they use, so however far away your result is from 1.0, they then calculate your risk of some kind of issue. If that makes sense. lol Maybe someone else will be able to explain it a bit better. It makes sense in my head, but probably not when I type it. lol Anyway, good luck with everything!


lol thanks original.gif
I already have 2 healthy children, 7 and 9, and i have until recently worked in disability with young children, up to adults, so i know what id be getting myself in for.
My parents know what i'd do and are very supportive as is my partner.

So the appointment is tomorrow, my partner took us all away for the weekend to a resort so we can stop thinking about it and it was fabulous!!
For the weekend i forgot about it mainly and was happy.

Im trying to prepare for the worst, as it just seems easiest that way to me..to hope hurts way too much.

Thanks so much for your help...fingers crossed they do the test tomorrow and dont make me wait or come back in a couple of weeks.
Up until now id just been seeing my regular GP..so i have never seen this obstetrician before.

#18 melbymelby

Posted 20 August 2012 - 11:25 AM

Hi everyone,
I've never posted before but i think now is the time.

Got called into the doctor on Saturday to be told my baby's risk of trisomy 18 is 1:56. I'm struggling to deal with this news, i know it's only a risk, and not a definite, but i'm just so scared. I was 12 weeks yesterday, so I guess it's the CVS i will have to have, there's no way i could wait another few weeks for the amnio. I'm waiting by the phone for a phone call to know whats going on, when i can have an appointment. I have no idea how it all works, i'm sure my doctor explained but to be honest once i heard the bad numbers i didn't hear much else.

I wonder if the fact my dates were out by 8 days has contributed to my bad results, my scan was way too early (11wks 0days) and so was my blood test (9 wks 4days)  well i hope it is the problem, but what would i know.

Have been reading some of the positive stories on here, its good to know the news is not always bad.

Good luck to you tomorrow mamamaree, I hope we both get the news we want to hear





#19 mamamaree

Posted 21 August 2012 - 06:09 PM

hugs melbymelby how did you go??

Im pretty sure your dates play a very big factor in this, and Ive realised today, that mine would of been done at the wrong time if it has to be done at 12 weeks...but im no expert, so im only guessing.

My appointment went well.
Apparently, what sarahbn87 said about the levels of the papp-a and bhcg is spot on..so i felt better about that.

He says that im not any higher risk than any other normal lady my age.
The soft markers also apparently don't have to come into factor here, but i did ask and they didn't report anything to do with the nasal bone on the report.

I asked for the cvs....but it had to be done in the town that is 4 hours from me and he says im nearing the end time for that anyway...so im having the amnio done on the 3rd of September and will have the preliminary results back on the 6th.
The rest of the results will be back 3 weeks after that. He assures me it is very rare for those two not to match up.

The doc doing the amnio doesn't use any local anesthetic at all..so im damn worried about how its going to feel!!!

So, more waiting, but i do feel more positive.

#20 melbymelby

Posted 21 August 2012 - 09:23 PM

yikes, no anesthetic.. maybe it wont be so bad! glad your appointment went well though, sucks you have to wait for the amnio, i guess maybe better because of the lower miscarriage risk?

i have been chasing my doctor for two days now, they told me they sent a referral to the hospital, but after calling them today to say i have still heard nothing, they confess it only got sent today! so so so annoyed... it will be too late by the time anything can be organised i'm sure.

i dont even understand, what happens at the appointment? do you first have one to discuss options? then go back again? ahhh i just want to talk to someone!

i went into my doctor and got a copy of my report, so now i have all these blood results but dont know what they mean...

free beta-hCG .12 MOM
PAPP A .39 MOM
Nuchal translucency .89 MOM

nasal bone present
CRL 45mm
NT 1.1

Trisomy 21 1 in 7970
Trisomy 18 1 in 57
  

I'm 30, will be 31 by my due date

everything i google has a high hcg and low papp a, but what about LOW hcg?? what does that mean?

This is all too hard  sad.gif

#21 mamamaree

Posted 22 August 2012 - 08:02 AM

hugs

can you go back to your doc and ask your questions?
I googled ALOT, just changed my wording each time to find what i wanted.

I had the appointment first with the obstetrician, who then booked me in for the amnio...they only do them on certain days here and the doctor i got was the closest appointment and shes the one who uses no numbing stuff..gawd!!
So im not sure how it works where you are..

He said i can take panadol and it wont feel any worse than getting the anasthetic locally anyway..i asked if i could take the whole box of panadol haha joking..

#22 melbymelby

Posted 23 August 2012 - 01:05 PM

well nearly a week after i was told of this very high risk i'm still sitting here stressing. i have had nothing but trouble from my doctors and the hospital, nobody will talk to me, after making phone calls for half the day yesterday i have found out that i now have to wait for a letter in the mail.... great. so helpful.

so have decided my doctor is useless and i need a new one, the public hospital system is a joke and i need health insurance. there seems to be nothing i can do to make anything better sad.gif its all too hard.
i read about other people with their genetic counselling and doctors who make them appointments for tests, i don't understand why i cant have that too sad.gif



#23 cletus

Posted 23 August 2012 - 02:23 PM

Hi everyone,

I joined this group about 3 months ago when I was initially given my results of 1:45 of T21 and 1:79 of T18 so I know what a horrible time it is. I just wanted to offer my support and share my experience of having amnio done in the hope it makes some of you feel better. I know the waiting is the worst part of all of this, especially if you go amnio over CVS and have to wait weeks to have it done.

I seen mention of people being concerned that an anesthestic or numbing cream isn't offered with the amnio - I don't believe it generally is.

It does differ for everyone, but I found it didn't hurt, but my stomach did twitch as they put the needle in and out and it felt "icky". It lasts for about 45 seconds (and the worst bit is the waiting while they do the preliminary scan to work out where the best pocket of fluid is -that took about 15 mins). tI'd have to say the boiling water I splashed on my hand this morning hurt a billion times more than the amnio. It's the mental side that is the difficult part to deal with. I slept all day after I had mine done too I think partly from mental and emotional exhaustion.

I got my fish results 24 hours later and all was clear.

It really is one of the most horrendous times I have ever been through and strangely enough even though I'm still high risk because of possible placental issues (from low PAPP A result which was the one to make me high risk in the first place), i'm not finding the rest of the journey nearly as stressful.

The best advice I was given was from a friend who did test positive for T21 was to make up your mind what you would do BEFORE you get the results from your amnio or CVS. Then at least you have a starting point if your bub does prove to have a chromosonal abnormality, because you might be so overwrought with the result that you can't even think about what decision to make.

#24 wallofdodo

Posted 23 August 2012 - 03:13 PM

QUOTE (cletus @ 23/08/2012, 02:23 PM) <{POST_SNAPBACK}>
The best advice I was given was from a friend who did test positive for T21 was to make up your mind what you would do BEFORE you get the results from your amnio or CVS. Then at least you have a starting point if your bub does prove to have a chromosonal abnormality, because you might be so overwrought with the result that you can't even think about what decision to make.


This is advice I would give too.

People often ask me if I knew something was up with my pregnancy. And all I can say is that the weekend before we went for the 12 weeks scan, I turned to my partner and said, 'You know we have never discussed what we would do if there was something wrong'. I had a very strong urge to have that conversation.

I am glad we did it before the test. I am just not sure how rational I would have been having the same conversation afterwards. And at least I knew what our starting point was, so the conversation was more around 'Well now it is a reality do you still feel the same way?'

edit - fix quote.

Edited by wallofdodo, 23 August 2012 - 03:31 PM.


#25 Apples

Posted 23 August 2012 - 05:09 PM

Hi all,

It has been a VERY long time since I have posted on EB (my sons are 8 and 6).  But here I am...

I had my US yesterday (11w3d).  During the afternoon (at school pickup) I got a call to go to my doctor ASAP.
I was in shock, but for some reason I thought it must have been something to do with the blood test... low iron levels? something like that. I thought it was too soon to know anything from the US.

We didn't even ask if everything was ok during the US... just assumed it was! They gave no clues, and our biggest concern was that there was only one baby!

So my results were:

feotal heart rate: 157bpm
Free BhCH: 1.01 MoM
PAPP A: 1.9 MoM
NT: 5.3
T21 risk: 1 in 3
T18 risk: 1 in 96

to say we are in shock is an understatement!

today I waited by my phone for a call from the Genetic Counselling service at the royal womens.  she was a lovely lady with a truly horrible job... but they will see me tomorrow at 1pm.

That means that we will get results on Monday... which is after my sister's engagement party on the weekend... where I did plan on telling everyone about the preganancy. I had to rush out and buy a new dress today that would not show my bump... not ready for telling everyone yet until we know more.

I'm so glad we didn't tell our boys yet...

Edited by Apples, 23 August 2012 - 05:10 PM.





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