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May 23, 2007


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I really like to have information, and if something was wrong, I wanted to be prepared. I also wanted to be able to have the best care ready for a high risk baby at the time of birth.

So, despite being 27 years old with no health risks whatsoever, we did decide to do some testing. We had the Quad screen that tests your blood for a few birth defects, and we did the ultrasound at 20 weeks (which actually isn't required!) to check out all of his anatomy.

We did not do the early ultrasound (around 12 or 12 weeks) that looks for Down's markers. We didn't do an amnio or anything invasive like that, either.

Should have said early ultrasound around "12 or 13" weeks! Oops!

I did it, even though I'm only 27 and didn't suspect anything was wrong, and even if there was something, we wouldn't abort. I did it mostly because I could have an ultrasound at 13 weeks, and it was honestly the most AMAZING experience of my entire life- to see him on the screen, to see that there was a reason for all of my barfing and fatigue.

Turns out, there's absolutely nothing wrong, and there's only a 1/50,000 chance that he has Down's syndrome (which is a very, very good number) and nothing else looks wrong with him either.

We had the second ultrasound at 18 weeks to find out the gender and make sure everything is growing okay and looks healthy- and the results were perfect. We're going to have another 3D/4D ultrasound in a month, just out of curiosity sake. I can't wait!

I agree with Kelly, it's nice to have the information... if just for the situation to prepare for something. But not to terminate. Which is where they usually go if you get some sort of weird results (which, by the way, are in percentages: you have a 1 in 500 chance of having a baby with Downs Syndrome, etc.).
I've had the testing done with all three now just because it's part of routine OB lab work.

It's somewhere to start.
If the results were bad or indicated some sort of defect, I don't think I would go with any invasive testing like amnio. I would just try to prepare ahead of time and just go with the flow.

I have thought through this a lot. My feelings go back and forth, but in the end, we have opted not to do prenatal testing, including ultrasound (which would identify many problems).

Pros of testing/ultrasound:
- you may get a couple extra months to come to grips with a diagnosis
- you may have the chance to line up experts needed for a particular health problem

- testing **often** causes unnecessary worry and is sometimes plain *wrong*! There are rare stories of people going through with heartbreaking abortions only to find out the baby was normal. Or in some cases, the baby is healed. I have one friend whose baby was diagnosed by ultrasound with Trisomy 13. After a lot of prayer and fasting, an amniocentesis revealed no problem, and the baby is perfectly healthy now. Was the ultrasound wrong? The diagnosis was pretty clear. So was the baby healed then? We don't know. What if they had aborted?
- certain tests (like amniocentesis) do raise the risk of miscarriage/stillbirth, though the risk is very low

Like you, we would not abort a baby if the baby had a terrible health condition (no matter how bad). So we don't need to know about possible problems for that reason. (I do understand the reasoning of the parents who want to prevent the baby from suffering, but we would still not go that route.)

Since we have homebirths, I've thought about what would happen at the birth if the baby had an unanticipated problem. My midwife would be able to resuscitate and/or stabilize the baby while transporting it to a hospital for any immediate care. Often situations which appear to need immediate care are not as critical as they seem.

On the other hand, if you know through testing that your baby is going to die, you (general you) could have a peaceful homebirth and let the baby die at home in your arms, rather than rushing them to the hospital to die hooked up to a million machines because you're not sure if their problem is life-threatening or not.

I have a different friend whose baby was born with Trisomy 13 and died within 12 hours. She had not had an ultrasound or any prenatal testing, so they were unaware of the diagnosis. She was *so* grateful for that in the end. She was able to enjoy her entire pregnancy without fear, worry, or grief. Knowing the diagnosis wouldn't have changed the outcome. It would've changed the timing of the grief, and it also may have allowed them to have a better birth experience (letting the baby die peacefully, rather than separated from the mother like he was because he had to be Life-Flighted to a specialty hospital). In my friend's next pregnancy, she did have an ultrasound to prevent her from worrying the entire time :-)

If the day comes that prenatal surgery is routinely available and *without increased risk of miscarriage*, I may have to change my thinking about testing. Right now, nothing can be done in utero for the baby if a problem is found (at least not without increasing the baby's risk of miscarriage/stillbirth). But as in utero surgery becomes more common and safe, there will be opportunities to fix certain problems (such as spina bifida) before birth. I know of a little girl whose had in utero surgery for spina bifida. The spina bifida was healed, but she was born early and ended up with cerebral palsy. I do not know if this was a direct result of the in utero surgery or not. But clearly the surgery is not without risks at this time.

I apologize for the random jumbled thoughts. But you asked for our take on it ;-)

I did the normal tests. Most of them were tests on me, not on my unborn babies. There were the urine tests, the blood tests, on me, to check MY health. The only test that was done on the baby was the Alpha Feta Protein (AFP) and I wouldn't have cared if they did it or not. Most results come back saying something is wrong on those test and, there is NOTHING wrong. I never even asked about the results.

Of course, I did the glucose test, but, again, my health and sort of the baby's. Gestational diabetes can happen to anyone. I didn't do any sort of genetic testing or amnios. Like you, there were no risk factors.

If you don't want the tests, don't do them. Well, except, the diabetes test, that can be a very serious complication for you and the baby.

At the risk of being in the minority of commenters so far, I'll say that I didn't do it for all the reasons you cited. I was 28, no family history and what am I going to do about it anyway? If there was a "problem" I wouldn't terminate the pregnancy and it wouldn't make me any more flush with cash to pay for doctors, specialists, therapies, etc. Plus, an earlier commenter pointed out that a significant number of tests come back with false results.

Now that Rachel has posted, I wanted to clarify what type of testing I meant :-) I was referring to testing on the baby.

As for me, the only testing done on me during pregnancy is the pee stick tests. We don't do blood tests or glucose tolerance (gestational diabetes) tests.

I couldn't have said it better. You have been BLESSED with this baby NO MATTER WHAT. No test is going to make you think any differently. Amen sister.

One of my cousins spent most of her pregnancy worrying about her baby after one of the tests came back with pretty bleak results. I don't recall exactly what the doctors said would be wrong with the baby, but it was something Big and Scary. Whatever it was, they were wrong. Her son is perfectly healthy.

Even before that, though, we opted to forgo the testing, mostly for the same reasons you cited.

good choice!

I had a couple of simple tests done, but I think it's perfectly fine not to. Since most of the testing won't reveal 'this IS what's wrong with your baby' but rather, 'these are the odds of having something wrong with your baby,' it might be easier to just NOT go through with the testing.

Since you've edited to add that bit about first-trimester screening, I'll come clean and admit that we did have that done with our first pregnancy in 2001. However - it had *nothing* to do with prenatal testing, and *everything* to do with us being totally excited about the pregnancy and getting a free ultrasound at 11 weeks!! (We were part of one of the early studies on the test.)

The baby was *so* adorable on that ultrasound - only 11 weeks, and yet so active and full of personality. We even have a picture of him clearly sticking out his tongue!

Thank goodness the results came back normal. An unfavorable result would've thrown us for a loop since we weren't testing with the intention of finding out any information, good or bad.

Also, sorry (again) for hogging your comments (again).

I never had any testing done. My doctor said the early ones gave off too many false positives so she didn't recommend it at all. We definitely would not have terminated either pregnancy, and I'm the type that would worry the whole rest of the time if I were told that I had a special needs child. And by worrying, I would mean worrying about how good of a parent I was going to be and scared out of my mind. I know a lot of things come up at your 20 week ultrasound, so that's what I was counting on. Everything else would just be dealt with when the baby arrived.

The only test I had done was the glucose tolerance test (because I was thirsty all the time).

I declined all other tests. If there was something wrong it didn't matter to us so we decided not to bother with the testing. I was 31.

I have not read any comments yet. You took the words, all of them, out of my mouth. I decided not to have testing for the same reasons. I didn't need to know, for any reason, if something might be wrong with my baby. I could go on but I don't need to because you really did say everything I have ever thought about testing. I don't think it's bad or wrong by any means, it's just not for me.

No testing here, either, for all of the reasons you mentioned. Wouldn't it suck to get a false bad result? I hear that happens a lot with the quad screen. (And hey, you'd be a lot bigger in the belly at this point if you were having quads. Ba dum bum...)

I did the test (it was with an ultrasound, so maybe it something besides what you did). The reason we did it? The doctor said that most insurance's don't pay for it, so if ours did (and it did) we might as well. Seemed logical to us.

But you gotta do that is best for you and your little family.

(I feel like I'm giving assvice. But I'm not. You asked. Right??!!)

Also, you are making me want to have another baby....whooosh, whooosh, whooosh, whooosh.

We didn't do it either, for the reasons you mentioned. It wouldn't have changed anything for us, and I knew it would just cause me unnecessary worry for the next 6 or 7 months wondering if the 'possibly' would turn out to be a 'definitely'. I think some things are best not known for me! So we just did the 18 week ultrasound and saw her little feet and hands and head and heartbeat and it was AWESOME.

Since I've never been in this situation, I can't say what I would do. If you know you would keep your little miracle regardless then what's the sense in worrying? Sorry, I'm not really sure, but I see your point and think it's very respectable. Sorry...this comment sucked because I have nothing of interest to say really.


I can't remember anymore which tests we did and which we didn't. I'm pretty sure we did the triple screen? I also had bloodwork done every month because of my hypothyroidism, just to monitor. We had a complication around 24 weeks, so I had extra prenatal care, but I honestly can't remember what kind of testing we did...certainly nothing more invasive than a blood test or ultrasound.
I think that, as you'll learn, only you and Luke can make the decisions that are right for you and your family. There will always be someone telling you what you *should* be doing, it's true. But you'll find your heart and your pace and your strength. You guys know what you're doing already...you're parents!

That posting was well thought out. Your families are both in good health.

I didn't do it. For me, it didn't matter either way. I was going to enjoy these children of mine for as long as I could and in any way I could... I don't care if they came out with problems.. (which I would have been aware of during my Level II u/s).

BTW, that is a high heart rate.. only my girls had high heart rates.. just a FYI

Although I know everything can change when you're actually in the situation, at this point I think I would opt not to do the testing as well, for the very reasons you gave.

Like you said -- it is important for some women. But if I get pregnant when I plan to, I'll likely be in a similar position to the one you're in, and I just don't feel like testing would be necessary.

Well, I honestly have no idea what choice I'll make when my time comes, but I just want to say that it sounds like you have a very well-thought out decision made. Probably the decision that I'd be most inclined to make based on family history and such. And hooray for the appetite beginning to return!

Since I haven't had a baby yet, I don't really know what I'd do. I think any routine, normal testing I'd do, because if there was something wrong, I'd probably want to mentally prepare, but I'd never think of terminating the pregnancy over it. But honestly, I don't know. I don't think I will know until I'm in that situation.

I think you guys should do what's best for you and your family. Everyone's situations and decisions are different, and I don't think it makes any difference at all if you don't do the testing. :)

I'm several weeks late with this comment but am just catching up with your blog. Brad and I opted out of the testing - the test here is the triple screen and it really just tells you whether you have a higher than average chance at having a trisomy, downs, or spina bifida baby. We discussed this to death with each other and bored everyone we know to tears. Ultimately decided no because we didn't think we'd do anything with that information. Except worry for the next 5.5 months. Even more than we're already worrying about all the things that could go wrong. Whatever pops out of me will be intensely loved and adored. Now only 4 weeks to go until the ultrasound! Good luck with whatever decision you make!

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