Wednesday, August 12, 2009

Calling All Moms!! Advice?

Next week I’ll be going in to my OB’s office for some testing that has been scheduled. The test is called Chorionic Villus Sampling (CVS), and I’m unsure how I feel about it. I was hoping to get some feedback from you moms out there.

For those of us who don’t know what it is (myself included, until I read up on it), they insert a small tube or needle into the uterus to extract a sampling from the placenta. The tissue therein is rich with genetic material matching that of the baby. They use this to test for Tay-Sachs disease, cystic fibrosis, as well as Down’s syndrome. The idea, apparently, is that if you found out that there were genetic defects, you could decide what to do... how to proceed. Whether to proceed?

You can imagine the thousands of thoughts that have been racing through my head. What would I do? I’m not sure that I’m willing to get into the details here, since this subject is one that people feel strongly about – one way or the other. Myself included. I avoid discussing this subject with friends and family, to avoid hurt feelings and getting into an argument with people that I care about. So I’d like to avoid that amongst us as bloggers, too. If you’ll forgive me for completely side-stepping this whole conversation.

MY concern, is whether to have the testing done AT ALL. I hadn’t really thought about it until my mother questioned why they were doing such an invasive test when there are no hereditary warning signs on either side of my and Scott’s families. Why, indeed? I tend to go with the flow. When my OB said that at around 12 weeks, they run tests for Tay-Sachs and Down’s syndrome, I said “okey-dokey”. Do what you’ve got to do. But do they have to?

After reading up on it a bit more, the consensus seems to be that there is a 1 in 300 chance of miscarriage associated with the test. That statistic improves in reputable clinics where the test is routinely performed, as is the case with my provider... But my bigger concern is this: What if we got a false positive?

My cousin’s girlfriend got pregnant fourteen years ago at the age of 16. When the CVS was done, the results came back positive for Down’s. She got a second opinion. Same results. She was devastated for her entire pregnancy. But she went through with it. At 16. And when the baby was born, out came a perfect, beautiful baby girl. With NO signs of genetic problems. She’s 14 now, and still perfectly normal.

I guess I’m just looking for some kind of assurance that everything will be okay. Not that anyone can give that to me. But is there anyone out there who’s had a baby recently?? Like within the past five years? Has the testing been refined or at all perfected in the past 15 years? Help! =)

In other news, today I am 11 weeks and five days pregnant. And last night, I realized that when I press on my lower tummy, I can feel my uterus. How cool is that? Four more weeks, and I might be able to feel some movement. Little baby feet kicking! So excited....

5 comments:

  1. I guess I would just say (without addressing the great big elephant in the room) :0) that if you WANT it to be a good pregnancy --in terms of what you can control-- then that's what you do. If having this test will either create stress that doesn't need to be there or won't have any bearing on your final decision, then why bother? Maybe it is good to know what you might be dealing with. But if there were to be something wrong with your baby, what could you do right now, right at the moment you're told, to make things different? I'm kinda of the mind that things are what they are. It's what you decide to do with that info that makes the difference.

    I do hope this helps and that I haven't been perceived as too tough. :0) Totally not my intention! You should enjoy your time as a Mommy-In-Training with as little un-needed worry as possible. ;0)

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  2. I definitely didn't think it was you being "tough". :) Thanks for the great advice! =)

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  3. I think it's great that you're doing research on this! The most important thing to remember is that these tests are NOT mandatory. You need to make a choice that is right for you.

    That being said, if you want my honest opinion, when I was pregnant with Toot, my answer to things like this was, "No!" across the board. Regardless of the percentages, no way was I going to agree to such an invasive procedure. This was my thought process:

    Since I knew regardless that terminating the pregnancy was out of the question, what would I gain from getting the tests done? (I have no family history of any of these things either) If it was positive, that could end up being wrong or if it was right, my whole pregnancy would be filled with nothing but worry and fear. I figured that if Toot was born with something wrong, I would cross that bridge when I got to it and enjoy my pregnancy as much as possible.

    That being said, YOU have to make the best decision for YOU and the baby no matter what anyone else would do in your situation. Good luck and bravo to you for questioning and doing research!

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  4. I'll give you my 2 cents (and that's probably about all that it's worth).

    When I was pg with my son, I did not have those types of invasive tests. I don't remember being given the option for them (maybe because I was in my late 20s?).

    That being said, I have 2 friends who didn't have the tests who have babies (well, kids now) with Down Syndrome. We were all pg at the same time. Both have now said they wouldn't have made the choice to terminate their pregnancies, but they would have liked to have known to be able to do research, line up the right doctors, services, etc. It was hard for them to not only have a brand new baby but to have a new baby with special needs. It threw a whole new level into an already stressful situation.

    All of that being said, if we are lucky enough to have a 2nd child, I do think I will personally have those tests if the option is presented. I do have a history of miscarriage (so my pregnancy with my son *was* completely filled with worry and fear), so it's kind of hard to see that 1 in 300 number, but I think it'd be better for *my* situation to know and get ready for any special accommodations we may need than to find out at the hospital.

    Again, that's just my 2 cents, so take it for what it's worth.

    Good luck to you! I totally agree with the above commenter that said that you have to make the best decision for you.

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  5. I did not have any invasive tests—my obgyn offered some alternative ultrasound testing (my doctor is the chief of obstetrics at our research hospital) that would determine whether or not to go forward with any more invasive tests.

    This is tough, because I wouldn't want to do anything to compromise the pregnancy, but I would also like to know for the purposes of preparation if there was something amiss.

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