Monday, June 16, 2008

to test or not to test

When the OB explained the Ultrascreen test to me, the prenatal test that measures your odds of having a baby with a chromosomal defect, she went into great detail about what the test measured. She carefully explained what different areas were examined through the ultrasound, what the blood test looked for, what the results meant.

When I asked what happened if something came back 'bad', she responded that it wouldn't. "I know," I said, "but what if it does?" "Well, it won't. Your odds are low, only slightly higher than when you were pregnant with Gabe." I nodded, but pressed ahead, "But what if it does? What happens then?" She seemed slightly bothered by my question, "We might advise an amniocentesis, but you wouldn't have that until 16 weeks." I was surprised by this, imagining what it would be like to live with the possibility of heartbreaking news for a month before I could have any kind of confirmation. We talked about an amnio and it's risks, and then moved on. I didn't realize until later that she hadn't really answered my question. In fact, she'd appeared to be purposefully resisting answering the question, even when I insisted.

This bothers me. It bothers me that she would offer a medical test, but then not have the guts to talk about your options if that test comes back with a devastating result. I can't imagine what I would do if such a thing came to pass, in fact, I pretty much push the possibility out of my mind whenever it arises. But I'd expected her to explain the medical side of everything, to describe the options or lack of options you have when you get the results of tests like these.

I am a "need to know" kind of person. I have loads of friends who have refused such tests, because they know in their hearts that they would keep their baby no matter what happens. I need to know. It doesn't matter what the answer is, I want to know as much as I can (except the sex, of course, which seems a little random, doesn't it?).

We had the test last week, and everything looks great, although we're still waiting for the results of the blood test. I dropped the subject with her at the actual testing appointment of what we would do if something came back with high odds of a chromosomal defect, because she was so positive about the ultrasound and said that the ultrasound made up 3/4 of the actual test. Still, it surprised me, especially at a major teaching hospital in Boston.

Maybe I'm totally mistaken about the way she was acting, but it seemed clear to both Josh and I that she was avoiding answering, and that concerns me. If you're faced with a terrible decision, I would hope that your doctor would be supportive and open about helping you through those decisions. In the meantime, I'll be keeping fingers and toes crossed that all my tests come back normal.


Songbird said...

I think the truth is we don't really know what we would do unless we're confronted with the bad results, at least that was my experience. And the docs know that, and they probably avoid going there with us unless they have to go there. I understand your frustration, however, and don't know what the real answer is.

Chatty said...

That's so funny, we are the need to know the sex people, but don't want to know anything else.

I agree with Songbird, I'm sure that the Docs avoid going there unless they have to. There are such a broad range of what specifically could be "wrong" and sometimes the next step varies greatly from case to case, or issue to issue. It must be hard to answer the "what happens if" question if you're a doctor. Sometimes they probably just don't know, and sometimes they're probably just trying to avoid any undue stress.

Beth & Rob said...

Good luck with the results I am sure they will be fine. I guess that she just didn't want to worry you with all the what if's. I mean every day we have a thousand what if's we are confronted with and if we worried about them all we would never leave the house!

I had that exact thing though. At my 12 week scan they thought that Daisy had a potential defect (the ultrasound showed up 6 fingers on each hand!) so we had to wait till 16 weeks for the amnio and then a further 3 weeks for the test results which meant that if something was wrong that we would have to deliver the baby either way. It was awful. And the doctors were terrible about it all (giving nothing away and never really discussing options with us) and in the end I wasn't sure why we had the test in first place but then of course we wanted to's a tricky situation. All was fine and out she came with 5 fingers on each hand! I am now terrified of scans...

Hang in there!

Maribeth said...

When I was pregnant with my girls I could have cared less about the sex of the child. What worried me was if they were okay or if they were retarded.
God I hate to even use that word now because it sounds so harsh, but you see I was the youngest child in a family whose oldest child, a boy was retarded. It was painful for me. He was a teenager by the time I came along (an accidental pregnancy) and he didn't like the fact that I was a cute kid whose body and mind worked.
I had such a fear about having an impaired child, that I think I worried myself silly throughout the pregnancies.
All was fine, but I could not get the doctors to talk to me either. It was a frustration.
Looking back, I think I would have switched doctors and found someone who would have talked to me and perhaps done the tests I wanted.
I'll keep my fingers crossed that all goes well.

Lady Liberal said...

I am the Mama who had the test and got the bad result. My Cecilia showed a cystic hygroma at her 12 week ultrasound and the subsequent CVS gave us a diagnosis of Turner's Syndrome. I also have a Down's Syndrome niece who was NOT diagnosed in utero. I've seen both sides and to be honest, I am all for the testing. Even if it won't change your course of action, I say forewarned is forearmed. Time to gather information and to process your emotional reaction before a newborn is in your care.
I'm disturbed, too, by your OB's reaction. Although she may have just been thinking there were SO MANY options and variables, that perhaps it was a discussion better saved for a "have to have it" situation.

My Wombinations said...

Wow. I am shocked by your OB's reaction. As a Dr, she should be able to put all the options on the table in a matter of fact way. That is pretty disturbing, actually.

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Knit and Purl Mama said...

That sucks that your doc can't answer your question that you've asked her a couple of times. I hope your results were good ones, I'm still catching up on your blog! I never did that test with either pregnancy, I didn't feel it was necessary.