Scan dilemma

[Inanna]

No problem OZzy - the questions you ask are really valid and as Jac says parly hinge on what you would do with that information.

NT u/s can be an absolute nightmare in the hands of some operators and I have seen professionally women who have been left in a complete state of despair from info received from operators. Thankfully when they sought out a second opinion their fears were allayed. It is my *personal* belief - so please no one shoot me down that NT u/s should only be done by a foetal medicine specialist. This is an obstetritian whose speciality is prenatal testing and diagnosis. It's kind a like you don't go to an auto electrician to balance your wheels - sure he may have some knowledge but he isnt' the expert. When you go to a foetal medicine specialist the doctor is there in the room - he looks at your baby - not just the nuchal fold but other soft markers, he looks at your blood results and he talks to you then and there and gives you your risk factor.
YOu can ask as many questions as you like and you are speaking to "the horses mouth".

There is a terrible fear of trisomy 21 (Down's Syndrome) however the reality is that in the great majority of cases this can be excluded and you will leave with the knowledge that in all probability your baby is perfect. Of course nt u/s doesn't preclude other conditions but a foetal expert looking at your baby has a very astute and trained eye. In Frank's case he has had one case slip through - in all the years of doing nt u/s. To explain this woman had a 1:290 risk of her baby having trisomy 21 - she decided against amniocentesis but her baby indeed was born with trisomy 21. NT u/s isn't fool proof but it gives an extrmemly accurate picture. However, I do believe the accuracy hinges on who does the scan. With a foetal medicine ob with good stats I believe you could feel very comfortable with her/his opinion.

I guess the question on weather to test lies with how you feel. If you believe that you would feel more relaxed if this was done then it's probably a good idea. If you feel that it doesn't matter what the outcome then it's probably not necessary. I have seen women go ahead with pregnancy when there has been definitive diagnosis of abnormality. A large number of these women (though not all) felt glad tht they had pre warning - they kind of did some of their grieving for the baby they thought was coming before it came. So when the baby was born they could welcome her/him with the full knowledge of who she/he was. Do you follow?

I think the whole prenatal testing thing is really difficult. I know personally I find myself very stressed before the nt u/s. However, thankfully each time I have left feeling very relieved!

It's a big decision and I think that you are very wise for considering all angles and not just accepting but asking questions. Good luck with it all - I would love to hear what you decide....

[visitor2]

Cass you have to work out what you would do with the results if they come back that you are high risk.
If you would go ahead with the amniocentsis it will show if you baby has any of the Trisomy's and not just the one for Down Syndrome. Also think what you would do with the amniocentsis results. How you will cope for the next 28wks not knowing if everything will be okay with your baby.

It is a lot to think about and trust me it's hard when you get the results that you are high risk and it's a very stressful time.

If you want to talk and ask any questions please email michelle@antique-locks.com
I had a amniocentsis a month ago and it was a great refief to find out everything is going to be ok.

[Karina]

Is the NT scan for nuchal thickness? Did you do a blood test that went in conjunction with the scan? I was told today only after I'm standing at the counter mind you that it would cost $150 with no rebate. So, I have no idea anymore

Hmm maybe its different where you are (but I dont see why it would be)...? Maybe they have already taken the rebate out so thats why theys ay you cant have a rebate?
I had mine at the ultrasound place at a private hospital. It was to measure the nuchal thickness (for downs symdrome and stuff like that, so it sounds like the same thing you were going to have) and also included a blood test. The scan cost me $240 and I had to pay this in full then go to the Medicare who gave me $60 back for it. The blood tests were done through a public clinic so they were fully paid for by medicare.

I was told its fully paid for by Medicare if you are over 35 or 37 or something, or need to get it done because you fall into a high risk category like youve had a baby with Downs Syndrome before... Otherwise you have to pay something out of pocket for it.

RE only having two places in Bris who can do this scan : I would have thought that all or most Obstetric and Gyn Ultrasound places would be able to do this scan for you!

I hope you can get a scan sometime soon.
I had mine done for my own sanity and because I thought I would like to know now, rather than find out much later(I'm also impatient!) and also because I was feeling uneasy about my pregnancy because I had been so sick and had a wierd idea in my head that this could mean there was something wrong because I wasnt eating so maybe I wasnt nourishing baby enough! My Doctor thought I was a bit crazy when I told him that!

good luck with everything!

[Inanna]

Karina,
There does seem to be conflicting stories with regard to the rebate. I am going to find out on Monday because it's puzzling. For my last 3 nt u/s I have been over 35 and I haven't got any more than $80 back. I am confused by women not getting any rebate. I will phone someone in the *know* on Monday and post in here what I have learnt. I t shjould make no difference what state you are in either as Medicare is Federal Govt.. Mmmm....

[Ozziehoffy]

I have seen women go ahead with pregnancy when there has been definitive diagnosis of abnormality. A large number of these women (though not all) felt glad tht they had pre warning - they kind of did some of their grieving for the baby they thought was coming before it came. So when the baby was born they could welcome her/him with the full knowledge of who she/he was. Do you follow?

Deb, that is pretty much along the lines of why I was going to do it...just in case and then I would have time to get my head around it and not be sprung with this HUGE surprise so to speak. My mum kinda had a go at me about it but she just doesn't understand. I was adopted, so she hasn't been pg and doesn't know the feelings and questions you get in your head. There isn't any history of it that I know of, although I haven't really stayed in contact with my birth mother, but she was around when I was pg with Joshua and would've mentioned it then anyway. This will probably be last baby so I'm guessing that I just wanted to make sure that all was perfect IYKWIM. To be honest I would feel upset if I didn't know and then my baby was born with D/S. Not to say that I wouldn't love them all the same, just would take away some of that bonding time whilst getting your head around something you were not expecting.

Is this something that does get picked up in the 18-20 wk scan as well?

Michelle, thanks for that offer I think that I do my own head in sometimes lol. Overthink, over analyse and just worry too much in general when there's probably nothing to be worried about at all. Right now, I think just hearing my baby's h/b would do me some wonders!! Must try to find a doc with a doppler I think.

[Kerri27]

unfortuantly it is true that not all medical imaging places do the NT scan. I would ring around to see if there are anymore places in your area that can do the scan. Some places also bulk bill if you are shared care with the public hospital and GP. I wouldnt give up yet , just make some more calls.

[visitor2]

Cass they can look for markers at the 18-20wks scan but it doesn't mean your baby will be born with Down syndrome. They will have a goodlook at the heart and they could see a problem but that doesn't mean the baby will have Down Syndrome. But sometimes they can't always get a good picture of the heart and you would need to have anothet scan around 24wks.
I was going to wait till my 18-20wks scan until i talked to a Genetic counsellor and she pointed so much out to me and that is why we went ahead with the amnio.

[Impatient]

Cass, I had one of my scans done at a place at Spring Hill (I noticed you're in Brissy) and I know they do the NT there, because I know someone who had theirs their. I think they're called diagnostic imaging for women, or something like that. I had a scan at 8 weeks and my doc was able to get me an appointment the same day.

Good luck with it, and get your bloods done asap!!!

[jja]

It might be overstating things a little bit to say NT gives an extremely accurate picture. When combined with maternal age, it will let about 1 in 5 DS babies through screening as "low risk". And at the same time, it will class 5 out of every 100 tested as "high risk" while most (~99%) of these high risk ones will actually be fine. Is a "high risk" 1 in 240 chance really that much worse than a "low risk" 1 in 260? I'd only call something extremely accurate if it gave a definitive answer - amnio and CVS are extremely accurate, NT is not - it can only give an estimate of your risk using statistics, not an actual answer.

NT scans, and other soft markers are just hints. Some babies (differs depending on the study but say about 20%) with chromosome problems have normal NT and no soft markers. The presence of soft markers also doesn't mean the baby definitely has a problem.

When you go to a foetal medicine specialist the doctor is there in the room - he looks at your baby - not just the nuchal fold but other soft markers, he looks at your blood results and he talks to you then and there and gives you your risk factor.

NT u/s isn't fool proof but it gives an extrmemly accurate picture. However, I do believe the accuracy hinges on who does the scan. With a foetal medicine ob with good stats I believe you could feel very comfortable with her/his opinion.

[Jac]

It might be overstating things a little bit to say NT gives an extremely accurate picture. When combined with maternal age, it will let about 1 in 5 DS babies through screening as "low risk". And at the same time, it will class 5 out of every 100 tested as "high risk" while most (~99%) of these high risk ones will actually be fine. Is a "high risk" 1 in 240 chance really that much worse than a "low risk" 1 in 260? I'd only call something extremely accurate if it gave a definitive answer - amnio and CVS are extremely accurate, NT is not - it can only give an estimate of your risk using statistics, not an actual answer.

NT scans, and other soft markers are just hints. Some babies (differs depending on the study but say about 20%) with chromosome problems have normal NT and no soft markers. The presence of soft markers also doesn't mean the baby definitely has a problem.

I don't know where you got your statistics from jja, but my pamphlet on Ultrasound Screening for Down Syndrome (obtained from Women's Imaging Centre Freemasons) says that the combined ultrasound with first trimester maternal serum screening has a detection rate of Down Syndrome of almost 90%. I would consider this fairly accurate and certainly worthwhile as a method to help you decide whether to access further invasive testing. I agree with Flowerchild.

[Inanna]

Ozzie, as you know the baby is still tiny at 12 weeks and though all the ground work is done there is still much forming to do. The obs doing your u/s will not just look at your baby's nuchal fold but the nose, shape and other soft markers that are relevant. I stand by my comment that NT U/S married with bloodwork done by a well recommended foetal medicine obstetrician is extremely accurate. As Jac said the figures are around 85-90 percent accuracy - meaning in up to 90% of cases an abnormality is detected. In Franks case the percentage is higher. So, again it rests upon the operator. The higher the percentage the more comfortable you can feel with the result.

Yes, you will be able to pick up soft markers at your 19 week u/s if there were any. However, where this can be tricky is that if an accurate NT wasn't done there would be query as to weather the baby was at risk or not. To explain if you had a NT done by a specialist and you were given a 1:1700 chance of your baby having trisomy 21 you would also be then given a risk factor for other trisomies and that would be say 1:4000 (the others are less common). If you see the same specialist he may see something at your 19 weeks scan that were seen as soft markers but in comparison with your previous results it would lessen the concern - do you know what I am saying, or am I confusing??? If your risk was 1:200 and then at your 19 week scan there were soft markers the concern would be greater. The reason that the nuchal fold is helpful is that if you do want a definitive diagnosis then you can have CVS or amniocentesis if you decide this would be helpful to you.

I want to clearly state that NT U/S is not a definitive diagnosis however it is my belief that in the hands of an experienced foetal medicine specialist it gives a very accurate picture of what is going on for your baby... I would always suggest going to the same specialist to do your 19 week scan also - there is a measuring stick then.

Good luck Ozzie I have been thinking of you I do understand that the decision to have a peek at your baby is a big one. The whole prenatal testing debate can be emotional. to you and I look forward to hearing what you decide...

[Inanna]

JUst an aside I agree the cut offs can be confusing - the figures given by JJe are not necessarily those used of all practitioners.

A great number of foetal medicine obs will use the amnio risk rate as their cut off. So the risk of foetal loss with amnio is around 1:250 (again this depends on the practitioner - I personally know one with a rate of 1:350 - it also must be remembered that these rates are using figures of foetal loss in the 4 weeks after amniocentesis/cvs. If you took me as an example I have lost 2 babies at around 16 weeks had I had amniocentesis my babies deaths would have been put on my practitioners stats...)

So if the amnio risk rate is 1:250 then any risk figures less than that are considered for amnio. Some practitioners use 300 so anything under 300 then the woman/family is counselled with regard to further testing. This is because the risk of the baby having a chromosomal disorder equals the risk of the loss of that baby through amniocentesis.
I fear I am sounding confusing!

[jja]

I stand by my comment that NT U/S married with bloodwork done by a well recommended foetal medicine obstetrician is extremely accurate.

I don't know where you got your statistics from jja, but my pamphlet on Ultrasound Screening for Down Syndrome (obtained from Women's Imaging Centre Freemasons) says that the combined ultrasound with first trimester maternal serum screening has a detection rate of Down Syndrome of almost 90%. I would consider this fairly accurate and certainly worthwhile as a method to help you decide whether to access further invasive testing. I agree with Flowerchild.

I definitely agree its a worthwhile method to help you decide whether to do more invasive testing, and that is its purpose.

But I think you might have misread what I wrote sorry. My figures were for the NT test accuracy *alone*, whereas your figures are for *combined* NT with serum screening which indeed improves the screening accuracy. The only reason I mentioned it was Flowerchild's original post just said NT was extremely accurate without mentioning the combo with serum screening, and I didn't want anybody to get the wrong idea about it. Also I suppose it comes down to semantics and what your definition of extremely accurate is, because personally I would never even describe the combined screening that way but thats just me

Even in the combined tests with a circa 85-90% detection rate, the false positive rate is still in the 2.5-5% range. This means that up to 1 in 20 people screened will get a "positive" screening result, but as we all know, the actual occurance of Downs is not 2.5 to 5% of pregnancies. So the usual result of a positive screening test is actually a normal CVS result - so I can't call that extremely accurate. The combination screen is only "accurate" in the context of being a screening procedure, just like Flowerchild said. As a diagnostic test its crap - not accurate at all - well its not really a diagnostic test I know, but hopefully somebody will get my point.

To me a diagnostic test like CVS is "extremely accurate" because it gives you a definite result and is extremely rarely wrong, but a screening process isn't because its just a way of calculating your odds by comparing your results against statistics - sort of like using a form book to calculate odds at the horse races. And if using odds was even just a bit "accurate", we'd all be millionaires from correctly picking all the horse races by now Except for me because I'm not much of a betting person.

Its just a matter of semantics and I'm probably being too picky Sorry...

[Inanna]

Yep, I would agree a little bit picky but we're all welcome to our opinions that's what discussion is about.

[Inanna]

Cass,
Just popping in to see how you went. I just remembered I was going to find out about the rebate issue. I will try to remember tomorrow....

[Lisa]

In regards to costs of scans/rebates etc... My NT scan was bulk billed because I fall into a High risk catagory... but, I yesterday booked in for my morphology scan, and I was told that as of the 28/8, you will be charged a fee of $160 (for concession holders) and the rest of your scans through the pregnancy will be bulk billed. I am not sure if this is the same everywhere though.

[Ozziehoffy]

Deb, after the whole "schamozzle" shall we say, I was really put off and really did wonder if it would only end up possibly making me worry for nothing...so I figure seeing as they can pick it all up better at 18-20 wks that it's just going to wait until then. The whole experience really left me feeling upset and with a bad taste in my mouth and I just didn't want to stress myself more. I am still a bit upset because I was excited about seeing my baby and hearing the h/b. Thank you for your concern though

[Inanna]

That's a shame. You can always just have a routine u/s without NT if an u/s at this time is something that would make you feel better.
Good luck.