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Support Group for High Risk NT Results with NO further invasive testing ~ # 7


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#26 gonggirl

Posted 04 January 2010 - 04:13 PM

High ladies, wondering if anyone can help me. I received a 1:400 of my baby having DS, it had me a little worried as my DD 3 years ago was 1:8463. I know it is not technically high risk but it still has me worried.

I have checked my tests against each other and the results aren't that different, so I can't quite understand why the adjusted risks are totally different

current baby
NT-1.7mm
Free BhCG-0.86
PAPP-A=0.53

My DD
NT-2.0mm
Free BhCG-1.87
PAPP-A=0.44

Oh the difference I noted was the gestational age was different.

I do understand I am a little older but didn't think it would affect the numbers this much... Maybe I'm just being a worry wart but anyone that could make me feel better is welcome. biggrin.gif

#27 maddiebub

Posted 21 January 2010 - 09:29 PM

Hi Ladies,
I would like to share my story with all of you and see if I can get some advice on my future decisions.

I fell pg with DD when I was 20, everything went ok (cept from a little spotting), until the 12 week testing (I think thats when it is???), The ultrasound measurements were normal but the blood test brought the risk for Downs Syndrome up to 1:209, apparently being high risk.  

The medical team really scared me and I really worried about my little girl (I cried for at least 2 days).  I chose not to have further testing due to the fact that no matter what, we were going to continue with the pregnancy.  The pregnancy remained hight risk (placental lake, believed to be small baby).  I was induced 10 days after due day, although I wanted to sick it out longer.  DD went in to distress, and when my waters were broken they were found to be stained, emergency csect, and apgar 1, she was in special care for only 5 days.  

She is now 2 years old and doing really well....  Now I am pg again (just found out) and soo excited...  I believe that the testing and extra untrasounds (8 in total) put more stress on my body and possibly caused more harm than good.  But I am torn because they could have picked up something more serious and actually been helpful.

Here is my concern...  I always said that I would refuse all testing for Chromosome abnormalities...  Now the time is coming up I am not so sure what to do!!!  

Any advice would be much appreciated and I would love to hear others stories.

#28 lilymurray

Posted 25 February 2010 - 02:41 PM

bumping past the closed threads original.gif

#29 Monstercroc

Posted 31 March 2010 - 10:52 AM

maddiebub, so sorry not to reply until now. I've been away for a while. If you're still out there, did you end up having the NT?

gongirl how are you doing?

We've had a busy few months with family and our youngest (the reasons these threads got started!) being diagnosed with autism. We're going ok though and are back on track.

If there is anyone out there who feels this group could be beneficial please sing out, I'm sure the others are still out there too and happy to help original.gif

Edited by Baby Gaga, 31 March 2010 - 10:52 AM.


#30 JazzBaby

Posted 26 May 2010 - 03:00 PM

Maddiebub - I know you posted a while ago, but I fully understand what you are talking about.

My NT scan had a fold of 3.7mm. The doctor at the clinic was really concerned for the risk, but bloods were normal and the combined risk was 1:279. So not as high as many others, but high enough for concern. In our favour was good anatomy of the heart and presence of a nasal bone. After agonising over it for 24 hrs we woke up the next day having made the decision not to do further tests. We wouldn't terminate, so didn't want to risk miscarrying a 'normal' baby.

The 20 week scan was also very positive. Again, heart function was good. Our gorgeous baby boy is now 3 weeks and showing no signs
of any abnormality.

I said after the NT scan that in future I wouldn't have the testing, but, like you, now feel that the ultrasound will be beneficial in picking up abnormalities early. I am a little torn, but don't need to face that until a little way down the track.

I hope everything has worked out for you whatever your decision was.

#31 sparklemum

Posted 28 May 2010 - 07:40 PM

Hi All

I am new to this forum.  My story so far

I fell pregnant when I was 32 with my 2nd baby.  At the time I had a nuchal translucency scan and related blood tests and fell into the high risk cat for trisomy 21 with a ratio 1:106.  The reason being a low PAPP-A of .23 At the time my son was only 6 months old and I just needed to know what we were being faced with and had a CVS.  The results were normal and I went on to have a little girl.  During the pregnancy I developed a condition called cholestasis and she was born at 35 weeks and healthy and around 3kg so not small!

I am now 36 and pregnant.  Had scan yesterday and again am high risk this time 1:163.  PAPP-A again the major contributer at .32 HCG 1.0764 and NT 1.86.  I am leaning towards no futher testing as am very scared of miscarriage.

I was just wondering if anyone else has had high risk mainly contributed to low PAPP-A in more than one pregnancy but not had trisomy 21.  Also if anyone knows of any other factors that may account for the low PAPP-A?  I have read that high blood pressure??  I can't help but think that my low PAPP-A is somehow linked to cholestasis......

Also with my 1st pregnance I was not high risk but my PAPP-A was .5 which I think is still a little on the low side with 1 being what they are looking for?  

Thanks for listening, hope I haven't rambled.

#32 Supernova2012

Posted 29 May 2010 - 11:33 AM

Sparklemum- I don't technically belong in this group as I had a CVS last week but I think I can respond to your question. My downs risk was 1:96 and all was ok.  My Papp-a was similar to yours (in the 30s).  The nuchal fold was 1.5 and the scan was all perfect- it was just the papp-a that made the risk so high.  

I  had an amnio in a previous pregnancy with my DD2, who was also fine.  I can't remember the numbers with her, but it was the same deal- great scan and the bloods made the risk high.   I have not done any research on this whatsoever, but I suspected that I would get a high risk from the bloods again.  I have this (totally unsubstantiated theory) that some people just have low papp-a for some other reason and will tend to have bad results accordingly.  

Obviously anyone even with a low risk could end up with a DS baby as the odds are just odds, but I recall a thread on EB a long time ago where someone asked what odds people got who actually had ds babies and from memory they were generally very high eg higher than 1:10- maybe search for this old thread.

Good luck.

#33 sparklemum

Posted 29 May 2010 - 12:42 PM

Hi Lexalotti

Congrats on your CVS result!  I too have a completely unsubstantiated feeling that some people just have low papp-a and went into this feeling sure I would again have it.

How was your pregnancy last time?  Did you have any complications like high blood pressure or small baby or premature labour?

Thanks for responding, as I am sure you know this is a very stressful time and talking to people who have been through the same is helpful.

Hope you enjoy the rest of your pregnancy.



#34 Supernova2012

Posted 01 June 2010 - 01:01 PM

Hi Sparklemum!  No, last time my baby was 4 days overdue and weighed 7 pounds 7, so not particularly small.  My blood pressure was never a problem.  This time the ob said he will monitor the baby's growth through scans, but I'm not too worried, as there isn't much I can do!


Good luck!

#35 catcandle

Posted 18 June 2010 - 06:15 PM

Hi everyone

I would love some feedback as I am worried with my results. I am new to this board.

My first pregnancy was low risk, 1 in 10,000 but I was 25. All went well.

This time I am 30, and risk is 1:2280. Still considered low risk, but at 13 weeks, 3 days, the babies NT measurement was high side of normal, at 2.8mm. Bloods were really good, so nothing to worry about from that point of view, and nasal bone was detected.

The doctor who did the scan said baby is looking good at this stage and very active, but said yes, the NT is bit on the thick side.

I was considering an amino but decided against it, the doctor said the risk of miscarriage is not worth it in my particular case. She said if the NT measurement was over 3mm she would have advised an amino.

Thanks


#36 JazzBaby

Posted 18 June 2010 - 07:31 PM

Hi Catcandle,

The results can be unnerving, can't they? I was 1:279, with an NT measurement of 3.7. We opted not to have the amnio as well, as the baby would have been kept regardless of results. Heartening for us was the fact that the heart anatomy was good, nasal bone was present and the brain anatomy also seemed well. We agonized over whether to have further testing for 24 hrs, but in the end we were comfortable to continue without. Further scans at 19 weeks and 30 weeks also showed good anatomy and we felt quite confident that all was fine.

Our baby was born last month with no signs of trisomy. All the best for your pregnancy.

#37 minimama

Posted 18 June 2010 - 09:21 PM

Hi catcandle,
I dont actually belong in this group as I have had an amnio- but thought I would pass on what my doctor said to give you peace of mind.
I too had a risk of 1 in 15000 or something for my first child, and with my second it was 1 in 480.  All my bloods were great, age is 29, and Im a non-smoker.  My NT came back at 3.1- which had me petriffied.  Our baby had good anatomy and a nasal bone.  
After talking to the person doing the ultrasound, I was very scared and felt obliged to get an amnio. I worked myself up and had many sleepless nights. It was a different story when I saw an OB to get the amnio done.  He believed my amnio would come back fine.  He also said some practitioners are better off not saying anything to the patients if it is going to make them anxious.  You cant look at any part of the screening test alone.  A high NT does not mean anything by itself, and is very inaccurate to use it alone.  The screening test only works if you look at all components.  I would have been more comfortable having a 1 in 480 risk if it was because of my age/smoking etc, but the fact it was the NT worried me.
Long story short, my amnio was completely fine, and I believe if I saw a more reassuring person doing my ultrasound I would not have got an amnio at all.  I am guilty of putting my baby at a miscarriage risk for perhaps no reason at all.
Hope this helps you out.

#38 minimama

Posted 18 June 2010 - 09:24 PM

oh, forgot to add- the person doing the ultrasound measured the NT, then said to me- oh its bigger than normal.  Then proceded to say that the upper limit was 3mm, and mine was over that.  They also said that the baby could have a higher risk of heart defects as well as downs syndrome etc.  Looking back, that person needs a lesson in how to talk to patients!!!

#39 BabyHopeful

Posted 19 June 2010 - 03:13 PM

Hi catcandle.  I don't belong in this section either but thought I would let you know DS2 had a NT measurement of 5.4mm which put him at high risk, 1:30.  The NT measurement was the only thing that put us high risk, but DS2 was born perfectly healthy.

Good luck

#40 catcandle

Posted 20 June 2010 - 01:04 AM

thank u so much for the replies, i read each one with great interest. I didnt know that u cant look at one single result on its own, such as just looking at the NT result isolated. I did read that having higher NT measurement does increase risk of heart defects, but i just have to be patient and wait for week 19 scans. Meanwhile if anyone has more things to add i love to keep reading comments.

#41 catcandle

Posted 20 June 2010 - 02:20 PM


minimama, what made your OB think all will be ok? I will be seeing my OB in two weeks so cant get any advice in the mean time for her.  I did call the midwife and she bluntly said if you need to know 100% then get the amino. But she would say that to someone no matter what their results were even if 1 in 10000. She said in the whole time she has been working one person did miscarry for the amino and it was a healthy baby so i need to think carefully about the amino, however i have pretty much decided against it since my overall risk is 1 in 2300. I also had my scan 13 weeks and 3 days but if i had the 2.8mm measurement at 12 or 11 weeks i would have had the amino done or CVS.

I dont smoke either or even drink.


QUOTE (minimama @ 18/06/2010, 09:21 PM) <{POST_SNAPBACK}>
It was a different story when I saw an OB to get the amnio done.  He believed my amnio would come back fine.  He also said some practitioners are better off not saying anything to the patients if it is going to make them anxious.  You cant look at any part of the screening test alone.



#42 minimama

Posted 20 June 2010 - 03:00 PM

Obviously the OB could not tell me 100% it would be ok, but said that 1 in 480 is still very good odds.  The fact that the anatomy was good, the nasal bone was present and my blood were good gave him confidence it would be ok.   Your odds are fantastic considering others, so I think your making the right decision.

#43 catcandle

Posted 21 June 2010 - 02:49 PM

QUOTE (V&J @ 20/06/2010, 03:35 PM) <{POST_SNAPBACK}>
Catcandle, my last pregnancy the NT measured at 2.8mm.  I was around 13 weeks too.  My blood results came back 'bad' though and I was given a very high risk 1:2.  I did have an amnio and the results were all good.  The doctor at the time said they like to see under 3mm, the lower the better though.



Did anyones doctor tell them if the blood results are equally important as the NT measurement? I read some places online that NT measurement is more important and than others that its the bloods that is more accurate...really confusing.

#44 Type1TTC

Posted 21 June 2010 - 08:05 PM

QUOTE (catcandle @ 21/06/2010, 02:19 PM) <{POST_SNAPBACK}>
Did anyones doctor tell them if the blood results are equally important as the NT measurement? I read some places online that NT measurement is more important and than others that its the bloods that is more accurate...really confusing.


Hello all ... I'm new in this forum.  

Catcandle - I'd really like to know the answer to that too.  I just had my NT scan today and although my scans were all 'perfect' my blood test resulted in my background risk of 1:139 being increased to 1:13.  

I'm really unsure what to do - I'll be 38 next month and this is an IVF pregnancy.  I don't want to to risk a miscarriage as I don't know that I will ever get pregnant again.

I'm debating whether to wait until the 20 week scan and look for other markers of an abnormality or just take my chance with the odds...

#45 myangelryan

Posted 23 June 2010 - 11:35 AM

Hi ladies

I used to post here a long time ago (if you search back many pages you might find my posts).  I had an NT result of 3.3mm on one of my twins in 2008.  The other twin was 2.3mm.  That put that twin at a 1:41 risk of DS.  I was 32 at the time. I couldn't have the blood work done as its inaccurate on multiples so they don't do it (in NZ anyway).

Well, we had an amnio on both twins and both came out perfectly normal.  We then had detailed heart scans on both of them and they came out fine too.

However, when my twins were born, our little guy Ryan was found to have a MAJOR heart defect.  He was rushed to a children's hopital at 2 days old and had major open heart surgery at 7 days old.  We took him home after 10 weeks in hospital and he died suddenly at 4 months old from heart failure.  I'm not trying to freak anyone out but I am saying that thick nuchal folds can be an indicator of heart problems and its seriously worth bearing this in mind and pressing for foetal echos at 24 weeks.

I'm so amazed by those stories of babies with nuchal folds over 3mm (over 5mm) that are perfectly healthy.  You girls are very blessed.

Good luck everyone.  It is SUCH a stressful time and I send hugs out to each of you.

Leesa

#46 minimama

Posted 23 June 2010 - 01:13 PM

Thanks for your post Leesa, Im sorry to hear of your loss.  Reading you post really scares me.  It definately brings back the anxiety I had before my amnio.  Im sure that many babies with NT around 3 would be fine though.  Keeping in mind that the NT measurement largely depends on the experience of the person measuring as well.  Yes, others with healthy babies are blessed, but I think the word amazed makes it sound like you are lucky to have a healthy baby IF you have a bigger than expected NT.  I dont think this is the case.  I just wanted to clarify this to not burden others with unnecessary worry and anxiety.

#47 muffinhead

Posted 24 June 2010 - 04:34 PM

Hello Ladies,
First time posting in this section but im hoping for some reassurance... Even just some translation of my NT results would be great!
I Picked up my results yesterday and find they have put me in the high risk category. I really wasn't expecting it at all as i have had 2 pregnancys and both with great results.Im 27 also so not on the older scale yet!
OK results are this..
Background risk for T21 is 1;847. The adjusted risk for T21 taking the NT in to account is 1:297 ohmy.gif
Nasel bone is present.
Free beta HCG 0.816MOM & PAPP A 0.879
The nuchal fold was on the higher side 3.2mm

Now i dont have a gp appointment till the middle of next and i don't want to self diagnose on google because that will drive me more insane ..
I know the fold is pretty high but im curious to know how the hcg and papp a affect the test. I'm wondering if there high or low? Is my Downs risk so high purely based on the 3.2 mm result?


#48 Bubble07

Posted 23 July 2010 - 08:52 PM

Hi, I am also new around here.

I got my NT scan results back yesterday and my risk factor for T21 was 1:277, my results got faxed to the specialist unit for further advice . I just got a call from the hospital a few minutes ago to book me in for a amniocentesis next week, DH and I had a chat last night and actually decided that we wouldn't go ahead with the amniocentesis as the risk of having a m/c is higher than having DS (only slightly). The fold was measured at 1.7mm (it was actually 2mm with my son - risk then was 1:725). I am 36 years old so age is counting towards me.

My Dr said to me if the amniocentesis came back as still high risk then the hospital would discuss termination with me. I told her that would not be an option.

I realise that my risk is not as high as some of the results I have read, however it seems that many people decide to have the amniocentesis done whereas we have decided not to. I feel I have to justify why I don't want it done and am feeling quiet scared about the whole thing as it is a huge shock for us all especially since we have no family and friends for support. DH can't even come to the appointment with me as he has to work so I basically have to talk to the clinician and decide on the spot if I will have the amniocentesis or not.

I just needed to get out how I am feeling as I am sure you girls will understand.

#49 Ms Peel

Posted 24 July 2010 - 04:56 PM

Hi,

This is my first ever post on EB, even though I have been reading several threads over the past weeks.

I had my third baby 12 days ago and he doesn't have Down Syndrome.

I had a high risk result at the first trimester screen. I was given a 1 in 219 for T21. The NF measurement was 2.9, my Papp A was 1.8 MOM and my HCG was 1.5. MOM, so it was the NF, HCG and my age 38 +11 that brought my odds up.

When I got my results I was shocked and spent hours on the internet trying to make sense of the results. Unfortunately I didn't find this website until my last month of pregnancy.

DH and I decided not to go for further testing as the risks of miscarriage were similar to the odds for T21 and we would not terminate.

With all the reading I did, I realised I needed a thorough 20 week scan with a reputable sonographer and was aware of the soft markers that are assosiated with T21. I made sure I discussed my concerns with the sonographer before the scan so that she was thorough.

The scan results were good and my concerns were put to the back of my my mind for the next five months. I was able to enjoy the pregnancy and this was a relief because I was worried I might be really anxious for the whole 6 months.

During the last month I started to worry about my reaction at the birth if my baby did have Down Syndrome, so I went back to the internet and that's when I found this site. Although I couldn't bring myself to participate in discussion at the time I found the posts a great comfort. I read both threads and also did a lot of research on Down Syndrome to prepare myself. It was on my mind right up until I saw my baby for the first time.

I was relieved to find my baby didn't have Down Syndrome but I know if he had, it wouldn't have made a difference to how I feel about him.

Well that's my story, I hope that might help with some of what you might go through over the next few months.

#50 roses99

Posted 27 July 2010 - 11:02 PM

Just a quick note for Bubble07,

You don't have to justify your reasons for not having an amnio. It's your choice and you're the one having to take the risk, however small it might be. It is very unlikely that an amnio would result in a miscarriage, especially if it's done by someone with a lot of experience. But, still, it is a risk and it's one YOU have to be comfortable with, not your doctors. In our case, we chose not to have the amnio but waited instead for the morphology scan at 20 weeks. When that came back clear, we felt confident enough that our baby most likely did not have DS. And as it turns out, she arrived five weeks ago perfectly healthy. You can look through my posts to find out more about our situation, if you like.

Just remember, that your results might be technically 'high risk' but, really, they're pretty low risk when you consider them percentage-wise. You only have a small fraction of one per cent chance of your baby having DS! The odds are most definitely in your favour.

All the best,

Jo




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