Stupid test results!

iVillage Member
Registered: 12-17-2007
Stupid test results!
10
Wed, 07-02-2008 - 6:16pm

Well, I got a call from the hospital today at 6:30pm (never a great sign). My results are in.

They went through a lengthy intro... your natural risk assessment at 42 (43 at time of birth) is 1:40 for chromosomal abnormalities, blah, blah, blah...

Based on your testing, we are adjusting your risk assessment to 1:59 (!?!).

So, being well informed about these tests and having been through two prior pregnancies and having weighed several risk assessments... I start with the questions:

If my first blood work showed a "fine" result (you will recall that this same Risk Assessment Coordinator referred to my last blood test result as "fine") and the maxed out U/S showed perfect results and no markers for Downs or other similar chromosomal problems... how did we get to a risk assessment of 1:59 - which I added wasn't too reassuring.

It is some mysterious combination of the three scores... and she wouldn't give me the individual scores. So obviously this most recent test must have come up with a fairly not so great score. That doesn't actually worry me all that much, as this test has a huge rate of false positives and also I read a recent NEJM article stating that the results of the early tests are far more accurate than those taken 18-20wks.

Next she advises that with a clean US, they can reduce my risk factor by an order of 5; meaning the risk of chromosomal abnormality becomes approximately 1:300 (same as at age 35). So, the best risk assessment on paper that I can get is 1:300 (admittedly a third of 1% - but higher than I anticipated).

We are in for the regularly scheduled US with the Neonatal Radiologist I really like on July 10th. I'm saving the rest of my questions for then. He will give me the straight goods. We can discuss the scans. I am pretty sure he'll give me the individual results of the then 4 tests... and we can figure out if amnio is where we are going. It would certainly answer some important questions.

With my last pregnancy - when I was presented with my odds/risks - I asked him directly, "If I was your wife and this was your baby - would you want an amnio to be performed?" He said no, the risk outweighed the odds of any problem being detected and the risk of a problem was very remote in his opinion.

So, that's where I am. A bit of a different place than I had hoped, but not yet in a disasterous place either. More info is needed, and more info is coming.

As an aside, I find it a bit infuriating that I cannot easily just get the individual scores of each test. I think this probably is against the requirement of informed consent for these procedures. I certainly know a few women who have refused the testing due to the assessments being so arbitrary and often inaccurate.

I'm still feeling very good about things... but I wouldn't say no to a few P&PT that everything is normal or better!

Libby

iVillage Member
Registered: 04-04-2008
Wed, 07-02-2008 - 10:25pm

How frustrating!

     Leeann   


iVillage Member
Registered: 09-01-2006
Thu, 07-03-2008 - 3:00am

Hi Libby,


I recommend calling the doctor again and insisting that they give you a copy of the lab report.


stellasiggy.jpg picture by estellaberg

iVillage Member
Registered: 10-25-2000
Thu, 07-03-2008 - 4:51am
Libby, I'm so sorry the #s weren't better.
iVillage Member
Registered: 07-15-2005
Thu, 07-03-2008 - 9:36am

Hi Libby. What is with this risk assessment person anyway? Makes you feel like you are dealing with CSIS, not your own medical record. I agree with Stella -- get the doc to give you a copy of the labs. I think that having that in your hands before your appt on July 10 will make it easier for you to sort out what questions need answering. Your odds of having a healthy one in there are still very good, but you need more info so you can feel better.


Fingers crossed for July 10.

Krista

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iVillage Member
Registered: 12-17-2007
Thu, 07-03-2008 - 10:41am

Thanks Ladies for the responses!

I have the impression that the hospital does not give the actual lab results to your own doctor, but rather just reports the scoring. I am going to get to the bottom of that for sure.

The way it works here is that the Fetal Assessment Unit and its staff doctors are in charge of all AMA US assessments and 2nd/3rd trimester USs and they perform the amnios. The doctor who is doing my US is the same doctor who has performed all of the maxed-out US in all of my pregnancies. He also performed an amnio for my first daughter. He will have done many, many amnios in his day. He is not particularly old, but he is well seasoned. I asked for him when I scheduled the appointments.

What I like about him is that he has never held anything back from me, he is a straight shooter and very clear in his assessments and advice.

I feel comfortable going to the July 10th appointment that I will get many questions answered. That said, I am going to be spending a little time before that attempting to collect the other info I want. If I can't get it (or not in time) I feel certain he will have it and make it available to me.

I wish the results were a little better - OK a LOT better... but they are what they are. Stella is right - they are giving me the best assessment that they can even if they don't especially want to give me the core data.

Luckily I am working flat out on a huge work related project all weekend, and that will keep me focused on other things than myself (and the bean).

Thanks again for the encouragement. I appreciate it!

Libby




Edited 7/3/2008 10:42 am ET by cl-kingmaker_inc
iVillage Member
Registered: 12-26-2007
Thu, 07-03-2008 - 11:46am

Libby:


I'm sorry the results were so unhelpful.

Susan L.

iVillage Member
Registered: 03-31-2007
Thu, 07-03-2008 - 12:01pm

Hey Libby,


I'm sorry you didn't get the results you were looking for, but your odds are still really good!

Carol, mom to 7

iVillage Member
Registered: 12-17-2007
Thu, 07-03-2008 - 12:51pm

Carol:

My testing did include Downs, so it is the triple or quad - not sure which. It is funny because this test is the one that always gives me a "bad" score. With my first daughter, the result was so bad they whisked me in immediately for an amnio... which showed the perfect kid I now have. For my second daughter, my first blood test was fine, the first and second US were great... but this darned second blood test came up with a bad score. And like your doc said - it skewed the result down from a great number (like what you got) to something much more risky.

The same doc I'm seeing next Thursday said it was a stupid test and considering the scoring on the other three - to ignore it.

I'm hoping for this kind of info when I see him this time. Until then - I'm keeping the negative thinking to a minimum and just counting the days until I can see my healthy and happy little bean again!

Libby

iVillage Member
Registered: 05-01-2008
Thu, 07-03-2008 - 1:45pm

Well Libby I am certainly sending you P&PTs! I really don't deal well at all with "odds" and gray areas. I always do prenatal testing after my second daughter was born with Turner's Syndrome, a chromosomal abnormality. It was a nearly unbearable situation to deal with that sort of discovery postpartum with all of the rest that your mind and body deals with after birth.

I had an amnio with my third and a CVS with my fourth. Those sort of decisions are of course personal but the "maybe" world just doesn't work with my personality.

I would say believe in your gut. I knew something was wrong in my second pregnancy and my doctor just blew my concerns off.

Having said all of that, I think your risk assessment is very favorable for a healthy baby.

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iVillage Member
Registered: 09-16-2006
Sun, 07-06-2008 - 1:32pm
I was reading you post and just have to give my two cents. I think all the blood test they do for DS are just a bunch of crap!! All the test do is make you worry and start getting stressed out! and they are a waste of money!!

DeeNise