Her Bad Mother

Thursday, November 29, 2007

No Matter What

I've always liked tests, for the most part. The academic kind, especially, because I've always liked to get gold stars, but I've also always appreciated other kinds of tests, like medical tests, diagnostic tests (not so much those involving needles, but that's a separate issue), too, because they provide information. I like information. I like knowing things. I especially like knowing good things, like that my lungs are healthy or that my reading ability in French is very good or that I'm qualified to teach political philosophy at the university level or that I have good blood pressure. Tests can tell you those sorts of things, or officially confirm them if you know them already. And until this week, I'd never failed a test in my life. This week, for the very first time in my life, I got a test result that I did not expect, and that I did not want. And I didn't like it.

It has occurred to me many times since this past Monday morning, since I got the phone call summoning me to the doctor's office to discuss what I knew would be bad news, that I might have been better off had I never taken any of those prenatal-got-a-healthy-baby? tests that seemed so compelling back when I was convinced that a perfectly healthy baby was a sure thing in this pregnancy. Of course, at the time, I wasn't fully aware of my conviction, but it was there. I might have thought twice about the tests otherwise. Had I known - had I really believed - that I might hear something that I didn't want to hear, I might have given this whole process a lot more thought. I might have thought twice about what would constitute a failure of these tests, and about what I would do if I 'failed.' As it was, I only toyed with thinking about it, and found the thinking about it to be too stressful, and so abandoned the thinking about it, telling myself that I could think about it if or when I needed to, and that in any case I probably wouldn't have to think about it at all, because, hey! the beauty of these tests is that they more often than not tell you that everything is perfectly fine and you get to spend the rest of your pregnancy secure in the knowledge that the odds are all in your favor, that you're probably going to get that perfect baby that you so deserve.

But then I failed the test - ironic that they call the results "positive," isn't it, when one's response is largely so negative? - and had to think about it. I had to think about what I was going to do. Which in turn meant thinking about why, exactly, and to what extent I regarded the test results as a failure. And what it would mean to regard the pregnancy as a possible failure. I had to think thoughts that made my head, and heart, sore. But the conclusion that I came to was this: that this pregnancy cannot be a failure, in the sense that no wanted pregnancy is ever a failure, because no effort to bring life and love into this world is ever a failure, even if it doesn't turn out the way that you expect, or want.

I know - I was and I am treading on dangerous ground here. There's a danger of getting maudlin and unpleasantly sentimental with this line of reasoning, and, more worryingly, of painting conceptionpregnancybirthlife with too romantic a brush, a brush that can all too easily get co-opted into other, more problematic arguments. But I'll stumble on with it, because I'm desperate to make my thinking clear, if only to myself, for my own peace of mind.

I want this baby. We want this baby. And we want it no matter what. I can understand, well understand, why some people are not able to embrace that nomatterwhat. I've seen, close-up, too close-up, a family shatter - cruelly, painfully shatter - because there was a what that mattered, and that what mattered with too much difficulty, and the difficulty of that mattering drove them apart. One can say "no matter what" with all of the optimism of Gilbert Grape wandering into Forrest Gump's neighborhood, but it doesn't change the fact that in real life, this shit is hard, and there's no heart-lifting orchestral score, and nobody gets any Oscars for being an audience-friendly special-needs person with a goofy-but-heartwarming smile, nor for raising one, and not every family would survive it.

I don't know, for hundred-percent certain, that we could survive it. But I know that the odds would be on our side, and that all of the love and the laughter that carries us through the hard times now could probably carry us through some even harder times. And I know that - I believe that - in some important way we have an obligation - because we have been so, so fortunate with that love and that laughter and that family heart that we have so painstakingly built, together - to not withhold that love because of fear. So we're going to have this baby, no matter what, and love this baby, no matter what - because we love him/her already and quote-unquote failures of genes or chromosomes or whatever shouldn't stop that.

This isn't an exercise in nobility; we didn't arrive at this conclusion because of some moral or ethical imperative. This isn't about what we need to do to be good people. It's about what we - us, my husband and I - need to do in order to keep our hearts intact. My heart intact. I already have ghosts; I do not want more ghosts, not of my own making. I am, in other words, too scared for the fate of my heart to make any other decision. And so I cannot regard any of this as a failure. No matter what, there will be a child, and that child will be perfect for us, under whatever terms that god or nature imposes, and there is no failure in that, never, no matter what.

I'm still terrified, though. I don't know what further steps to take, or whether I should just stop taking steps and simply follow the current, whatever direction it takes me. Do I take further tests, knowing how badly they've already upset me? Will I have a happier pregnancy knowing or not knowing? If I am carrying a child with Down's Syndrome, is it better to have that information so that we can prepare in all the ways that we might need to prepare? Or is it better to just enjoy the pregnancy without thinking or worrying - if that's even possible - about how it's going to turn out. If I am committed to believing in the success of this pregnancy, no matter what that success looks like, do the tests matter?

I've already said, I tend to be happiest when I have information, the more the better. But I've never really meaningfully grappled with having information - conclusive information - that I might prefer not to have. I don't want this baby to have Down's Syndrome or any other quote-unquote abnormality - but I will love that baby no matter what. Where does that leave me? Do I want to know more, or do I just proceed on faith in lovenomatterwhat?

I think that I want to know, but truth be told - I am now terrified of the tests. TERRIFIED. Especially of amniocentesis (about which I have to make a decision). I'm terrified of the risk of miscarriage and the needle (oh god) and the pain (they call it discomfort but I don't believe them) and the fear that I will almost certainly feel while waiting for results (because, despite everything I have said here, I am incapable of summoning enough zen to convince myself that the results don't matter.)

Please, please tell me - what did you do? Did you do any tests? Did you have amnio? Why or why not? Were you terrified? Did it hurt? Are you glad that you did, or didn't? I have no idea how to make this decision, and I need all of the help that I can get.


139 Comments:

Blogger Hannah said...

Bear in mind that I haven't been in this situation yet - although I go for my ultrasound next week and now I'm kind of terrified because of what's happening to you - but if you've already made your decision, I say get the next round of testing. You know that there will be major challenges, and at least if you know now you have time to prepare - not just yourself, but your family as well.

This post is honest and heart-wrenching in a way I wasn't expecting. I wish you nothing but good in the path that you've chosen - wherever it leads.

12:10 PM  
Blogger Mama V said...

Still thinking of you, HBF, WB and Sprout... Crossing everything for you for a happy and healthy outcome - in the meantime... this is an interesting take on your situation - my friend who's child has Downs passed it on to me to pass on to you...
http://www.our-kids.org/Archives/Holland.html

12:16 PM  
Anonymous Anonymous said...

I have never been in your situation as I chose to say no to all the tests, from the beginning. I knew I would love my baby nomatterwhat, but my husband would have the what, so we chose not to know. All the advice I can give you is based on a friend. She was told her one child (she was carrying multiples) may have Downs b/c the ultrasound indicated a larger than normal head circumference. She refused the amino, as she had already suffered numerous miscarriages. Her son ended up being perfectly healthy. I understand wanting to be prepared, wanting to know but is it worth losing sprout? And more importantly , what will you do with that information? if it will not change your decision on keeping sprout, then how can putting yourself through that risk be useful?

12:24 PM  
Anonymous amy said...

I don't have an answer for you. I haven't been in this situation. I wonder, though, what these choices might do to me. I imagine I would grieve a bit for the way my naive assumptions and expectations didn't play out, even though I was settled on my choice to proceed. I have to ask myself then, when do I want to grieve? If I pursue the information before the child arrives, I can grieve and try to let go of that grief before the birth. If I wait to learn if the indicators were correct, then I risk grieving on the day of my child's birth, and if I can hold on to any naive demand about that day, I would want that the day is as joyous as it can be. But, all this supposes I wouldn't be feeling the grief throughout, during, and into, anyway.

This comment is pointless. I don't know what to say, HBM. I wish you peace, regardless of your choice.

12:32 PM  
Blogger Awesome Mom said...

Evan's heart defect was not diagnosed in utero so I never had to face the questions that you are facing now. With Harry we decided to keep the testing minimal. I just have the normal ultrasounds and the AFP (which I am not going to take again, it was annoying and is often wrong).

If I was in your situation and knowing how you feel I would just stick with the minimally invasive tests. A lot can be seen by ultrasound. They should be able to tell if there are issues to worry about with out the risk of a miscarriage.

We did minimal testing with Harry because we knew that even if he ended up having a heart defect like his brother we would still keep the pregnancy. Knowing the results would not have changed our minds so we chose to not take the tests.

12:34 PM  
Anonymous Anonymous said...

What I have to say is based on one pregnancy, a healthy birth and a healthy 1.5 year-old. I did no testing during the pregnancy, only asked during the ultrasound if there were any markers of problems. Looking back, I would've been woefully unprepared if my son did have any problems. I'm like you, I love information, I feel prepared if I have the information.

If I do get pregnant again (and I plan to someday in the next two years), I would test. And if a test came back suspicious, I would test to find out why.

I know the worry of waiting will be excruciating, but the security of information can be soothing.

12:38 PM  
Anonymous Marilyn said...

Thank you so much for posting this. You've put an incredible human face on a very wrenching situation. You have my thoughts and prayers, no matter what.

12:38 PM  
Blogger Lady M said...

Catherine - you are such a strong and loving person and you have a strong and loving person. Your new baby will be in good hands.

I had the amniocentesis, because I'm a person who feels better when prepared with knowledge. It might be a false feeling, because who could even be truly prepared for any baby, no matter the chromosomes?

The physical pain was much less than I expected. It was described to me to be like a blood draw, and it wasn't all that different (in terms of pain - obviously, the stakes are much higher). The nurse said it'd take a minute, and indeed I counted 57 seconds while I waited.

The odds that we grew up hearing about amnio-induced miscarriage are much more severe than what they quote now. Apparently, the stats were influenced in the past by the fact that women of the age to request amnios were already slightly more like to miscarry. That being said, anything can happen, so I was fortunate to find a testing clinic that has its own miscarry-rate that was a hundred times lower than the national average.

The waiting is hard, no question about that. Everyone's situation and feelings are different, so I'm wishing you all the best in deciding whether to test or not. Much love to you and your family!

12:41 PM  
Anonymous Anonymous said...

After reading the pamphlets and before doing any tests, I decided NEVER to have an amnio. I'd already had one miscarriage and it took a while to get pregnant again, so I didn't want to risk it. I couldn't imagine having a miscarriage from an amnio when the baby might be perfectly healthy.

12:42 PM  
Blogger AliBlahBlah said...

I was not going to get the AFP, but then my Mum, a biologist, told me in her wonderfully English way 'why on earth wouldn't you want the information when it could help you either way'. I can see both sides the of the coin, to know, to not know, but in the end I came down on the side of forewarned is forearmed - but only if both parents agree on what they would do if they get a positive. And they are very often false.

My thoughts are with you, your family and sprout. I think you're brilliant for putting all this out there.

For the record the absolute nicest bloke I ever knew had a younger sibling with Downs. I've often wondered if his parents being the sort of people to raise a Downs child made him the stellar bloke he was, or whether the experience softened him to the imperfections/opportunities of life.

Good luck.

12:47 PM  
Blogger BOSSY said...

If you could successfully shut your mind off from obsessing over the range of possibilities it would be optimal, but is that possible? And if it's not possible, than why not let further testing reveal the scope of what you are (or are not) up against.

Are you happiest with knowns or unknowns? For most people, the unknown is a far scarier place.

12:48 PM  
Blogger Someone Being Me said...

I am so, so sorry that you are having to make such a difficult choice. I, like you, enjoy tests for the most part and the idea of going through the rest of a pregnancy with that unknown hanging over my head it just too much. I would much rather know and plan for something than worry and make it bigger in my head. That being said, I have never had to make that particular decision. I refused the blood test and chose to instead go with what the sonogram showed. My mother had my brother at 37 and she did have the test and did come up high risk. She did do the amnio and the baby was fine. I also had two friends, both in their 20's who had positive blood tests for high risks and they both did amnios and both had beautiful, healthy babies. Not every story has that ending but I hope it will for you.

12:49 PM  
Blogger Mouse said...

Not that I think I can advise what's right for you, but Trillian and I are both the sort who prefer to have information. With Scooter and my recent miscarriages, we decided that we wanted the non-invasive testing (counting blood draws as non-invasive, even if they do involve a needle). That's still mostly where I fall, though I also know better than to say never about an amnio. But there's a lot that can be seen via ultrasound, and you might get the sort of info you need from your next one.

Regardless of what you decide in terms of the tests, we're thinking of you and keeping our fingers crossed.

12:50 PM  
Anonymous Anonymous said...

In my first pregnancy, I had a positive test result for downs. We opted not to have the amnio. The wonder about our son and his genetic makeup and his/our future consumed, consumed, consumed my pregnancy and the birth in an UNHAPPY way. It turned out he didn't have downs.

In hindsight, I still believe it was best not to have amnio (given the risk of miscarriage) but I wish I had advocated for more in depth ultrasounds to provide an answer one way or the other. Hoping he wasn't but "hunching" he was downs was not helpful. While we sort off prepared ourselves for it we really didn't because we hoped he wasn't.

While ultrasound is not used in Canada as a diagnostic tool for downs it is in other countries and it would have helped with my anxieties. I know this as in my second pregnancy, I tested high for trisomy 18. Again no amnio but many in depth ultrasounds for information. By 30 weeks they were certain our baby was fine (he was) and I could relax a little in the pregnancy and the birth.

For my husband and myself knowledge was a good thing and helped us deal with the potential issues more productively than living in a constant state of fear of the unknown.

Follow your gut and advocate for what you think is best for you and your baby.

12:50 PM  
Blogger Crystal said...

Like I posted yesterday, I chose not to have the amnio. I had already decided no matter the outcome to have that baby. I didn't want any additional risk. However there were additional non evasive things that they did, like follow up ultrasounds. Have you had an additional ultrasound? They can measure somethings and look for other things, but again, it is only giving you markers of what may or may not come to be.
I let myself buy a couple books but I also let myself be happy and enjoy the pregnancy. We had a healthy baby, but I still inspected every nook and cranny of that baby when she arrived looking for any sign of Down Syndrome.
You will be a great momma (and daddy) to whatever baby god places in your family. Sprout is one lucky little bug. This is the baby you were meant to have and you already know that.

12:51 PM  
Anonymous Angela said...

I know I told you a lot yesterday on my own experience with this, but since you asked...

my own feelings when I got the positive on my trisomy 18 test was I'd have the ultrasounds, blood tests or whatever NON-invasive test they had. Because knowledge is power and let's you prepare for whatever might happen.

BUT if something else bad showed up on the ultrasound, the only two reasons we would do a more invasive test (amnio or CVS) were:

if we were looking to confirm something that they could DO something about- Like if there was evidence on the ultrasound for a spinal thing that they could operate on in-utero, or something like that.

OR if we were looking at several things that were not compatible with life, like the ultrasound showed several major anomalies and we needed to confirm them via amnio or cvs. Because, for us, we would consider termination if things were so bad the baby would be either stillborn or die immediately. At least we thought we would at the time.

But what happened for us was that while there was a marker for trisomy 18 on the ultrasound, it was only one marker, and it wasn't in and of itself a problem. So we knew chances were the baby would be healthy enough to live through the birth, even if there were challenges ahead. And risking everything just to "know for sure" by looking at the chromosomes just wasn't that important.

I can't remember if I gave you a link in yesterday's comment to my blog where we were going through this, but you can visit my blog's archives to Fall of 2005 to see how we were dealing with it. The first post about it was here: http://angelamott.blogspot.com/2005/10/busy-day-banned-and-got-results-back.html

Best of luck to you in making your own decision. I know how hard this is.

12:57 PM  
Blogger verybadcat said...

I don't have kids. So, I am rather unqualified to tell you what to do. I can, however, tell you what I think I would do.

I'm a knower. I can't stand not to know what I'm getting for my birthday two weeks beforehand. If I waited until the baby was born to know, either way, I would be bald at the delivery, and alone, because WH could not have handled my not knowing. If there was a way of knowing that wasn't as sure, but was safer, I could probably settle for that. In the end, though, I gotta know.

If I were in your shoes, I would be having to know, because to WH, what matters. See, I get to pin it on him and not heavily examine my own thoughts, because to him it matters that much. But, if I were in your shoes without the what mattering, I would want as much time as possible to prepare family members, absorb the idea, etc. I would want to be way over it by the time Sprout came into the world.

1:01 PM  
Anonymous Andy said...

We struggled with whether or not we wanted the tests. We talked beforehand and decided on no matter what, though I fight for the option, it just wouldn't be the one we chose. But, like you, I like to know. I wanted the time to prepare myself if the chance was there. So we went ahead with them just for the "I need to know factor" even though we had already made up our minds.

I've been thinking a lot about you these last few days and wanted to delurk to say you are in my thoughts. I don't pray, so I can't do that, but I am thinking of you and your family.

1:02 PM  
Blogger Suz said...

We had the amnio after a possible positive on one of the prenatal tests. Our situation was a little different as I was pregnant with identical twins. We didn't know what we would do if they both had Downs. I don't know why the fact that we were having twins made us think so hard about it, but it did.

The pain from the amnio really wasn't bad at all, although the needle was long and scary. I knew it would be and just chose not to look. That was the right decision for me. Regardless of what we did, I needed to know. I'm just the type of person who likes to prepare, as much as I can, and to know.

It turned out fine. We got the results and, today, we have two healthy boys. I'm not a religious person, but I am thankful for this.

1:02 PM  
Blogger mamatulip said...

When I was pregnant with Oliver and had my routine ultra sound at around 20 weeks, red flags came up. My OB called and told me that I had placenta previa, which I was expecting because I'd had it with Julia, and he said this time around it was more severe and that I'd have to be closely monitored because of it. He then told me that the ultra sound had detected cysts in Oliver's brain, cysts that were a marker for a chromosomal abnormality like Down's or Trisomy 18.

All I heard was "cysts on the brain". I completely fell apart. My OB told me that many times the cysts drained on their own, that many times they weren't cysts at all but merely shadows and that the chances of the cysts disappearing before the next ultra sound were very, very high. Still, he wanted to send me to McMaster for a level 2 ultra sound, and there I was to meet with a genetic councilor to discuss screening and an amnio.

And before we knew it, Dave and I were faced with some serious questions. We had to discuss and explore new ground that, as first-time parents, we'd never had to consider, much less think about. It was really hard.

We decided at that point, before any other ultra sounds or tests, that we wouldn't have the amnio. I felt it was very important for me to try and go about my normal routine as much as possible in the midst of what else was going on. Julia was just 2 and I knew that if I got negative results from the amnio that I would completely fall to pieces. It was very important to me that Julia's life and day-to-day routine was not altered because of this, and I felt that for my own sanity and peace of mind, I had to focus on the positive and not worry about results. I'd spent so much time and energy worrying about something I didn't know for sure or not and I wanted to try and enjoy the rest of my pregnancy.

My decision surprised me, because normally I am a "forewarned is forearmed" kind of person. I always want to know what's ahead of me, so I can better prepare. But in this case I realized that I had no control over the situation. I accepted that what was meant to be would be, and conceded that I was just along for the ride. After I'd made that decision I felt much lighter.

And in the end, the cysts disappeared and Oliver was born healthy and happy. The experience changed me, though. It truly did.

That's what *I* did, and you will do what is right for you and your family, I know it. Hang in there, and know I am thinking of you...all of you.

xo

1:06 PM  
Anonymous Anonymous said...

I went through a similar issue with my 2nd pregnancy. I had done the testing with my first and everything was fine. So when it came time during my 2nd pregnancy, I went ahead and did it without a thought. Then I got the call and had to see my doctor - during her walk-in clinic time so I knew it was bad news. Spina bifida. I never thought about something being wrong or what the next step would be. It wasn't with my first so I assumed the same this time around.

We went for genetic testing - a higher degree ultrasound for us. Originally, the baby had 1 in 800 odds for spina bifida but the odds for a miscarriage from amino was 1 in 200 and I had just suffered a miscarriage a month prior. We decided it wasn't worth the risk. The ultrasound showed no obvious signs of spina bifida and the odds from there were 1 in 4000. I'm a numbers person so I liked those odds. The Beaner turned out to be a healthy, colicky, spirited 10 lb. baby and she put us through a lot before her birth and every day since.

1:06 PM  
Blogger kgirl said...

We said no to the tests.
We knew that a test result would not change our desire or love for this baby.
We found out I was pregnant immediately following a devastating miscarriage and my dad's cancer diagnosis. It convinced us that life gives you what you can handle. And what you can handle will surprise you.

Strength and love. xo.

1:08 PM  
Anonymous Anonymous said...

Have you had the "BUN" test? It's an ultrasound combined with a blood test (actually just a finger prick) and I had it with my 2nd two kids b/c of my "advanced maternal age" (i.e. over 35!). 4 years ago I had to travel to get it, but 2 years ago my local hospital is doing them. Pretty good accuracy, and not invasive. Good luck, whatever you choose!

1:11 PM  
Anonymous DaniGirl said...

I'm guessing you'll soon have an appointment to discuss your options with a genetic counsellor, which should give you a lot of helpful information in making your decisions. That's what happened to us, when my firstborn son (conceived by IVF after two years of infertility and a miscarriage) showed an elevated risk for Down Syndrome. We opted against the amnio, because the risk of miscarriage from the amnio and the risk of Downs were the same - one in 250. It simply wasn't worth the risk to us, and we wouldn't have done anything different had the amnio conclusively proven he DID have some genetic abnormalities. The course of prenatal care wouldn't have changed, there was nothing we could do to prepare one way or the other. And so in our case, ignorance was bliss and in the end, he beat those odds.

Wishing the same outcome - a false positive - for you.

1:17 PM  
Blogger Stacie said...

ok, you have gotten great advise...so I will ditto most of it.

There should be a more extensive ultrasound that they can offer you. Usually in that u/s is where they can either prove or disprove the original screening test. I would most definately go that route, if it were me.

As far as the amnio...I wouldn't even know where to start with that, it is scary, it is not something I can even wrap my own brain around and I am not even pregnant.

So bottom line, I am no help other than suggesting the more extensive u/s and I hope you find your results (either way) there!

HUGS. You and your family are in my thoughts.

PS...very beautifully written, thank you for letting us into your world. I don't even know you and I want to hug you and tell you it is going to be ok.

1:26 PM  
Blogger Cursing Mama said...

I know that when I was pregnant I, like you, took the tests expecting to win even though in my case the option of not wining was significant; I can't tell you what I would've done had I gotten a different answer.

If you know one way or the other for certain - would it change the way you as parents will prepare for this new baby? Are there other, important, additional things you need to do in order that a child with Downs be cared for successfully at home?

1:29 PM  
Anonymous thisKat said...

I'm so sorry you're going through this. Please keep in mind that the AFP is just an indicator of chances and that your age is a big factor in their calculations. So much is wrong with this test--it's totally dependent on your dates, which could be a little off, and your age. For my second kid, I chose not to do this test because I remember how much I worried about it the first time and since I was a little older the second time I knew that it was just more likely to come back with increased chances. I wouldn't do an amnio and I wouldn't terminate, so what was the point? I know that doesn't help you now. What I did instead the second time was an US at 12 weeks. In your case, I would do another US just to see what you can see, and go forward knowing that THE VAST MAJORITY of women who get elevated risk results from the AFP have PERFECTLY HEALTHY BABIES. THAT KNOWLEDGE is your power.

1:36 PM  
Blogger LD said...

I'm like you-- I crave information, but when I was pregnant with my son I opted for no tests. Although I know that if something had shown up in an ultrasound, I would have gotten ever test imaginable. And then, with whatever the results were I would read every book I could find on the topic. But that's the academic in me. I pray that your decision becomes easier to make and that whatever the results, you hold onto the amazing strength you wrote out into cyberspace today.

1:37 PM  
Blogger Jaelithe said...

I skipped the triple screen entirely because I knew I wouldn't want to do amnio over inconclusive results, because I worried about miscarriage, but I also knew that if I GOT inconclusive results, I would worry for the rest of the pregnancy without an amnio. My OB's office threw a screaming fit over that decision. Literally. One of the doctors pulled me aside and yelled at me and strongly implied I wasn't being a good mother and I didn't care about the baby, etcetera, because I had skipped the screen, which would hav given me information to prepare for this and that, etcetera.

I metaphorically stuck my fingers in my ears and sang la la la while she yelled, and eventually she got over it.

However, you may want to know that recent studies have shown the amnio-related risk of miscarriage is MUCH lower than previously thought. If I'd had this information at the time, I might have chosen differently. I am not sure what I will do if I am pregnant again.

I do know my own fear of needles made natural childbirth a much more appealing option to me than an epidural. So I TOTALLY empathize.

I think you should do what feels right. *hugs*

1:37 PM  
Blogger Kelly said...

My thoughts are with you as you travel down this road.

1:38 PM  
Blogger Mimi aka pz5wjj said...

With my 4th pregnancy (the 2nd full termer) my doc said I could "have" the tests, but because of my age (I was 37 at the time) the tests would come back "Positive." He said it's all age related and if I didn't want the stress of worrying about it, to not bother. In fact, he said if I wanted to know for sure, to skip the triple test and go straight for the amnio.

I opted to not have an amnio or the triple test. I wanted him and that was that. I too have a medically fragile neice and know that not all tests are conclusive of anything.

A friend of mine had an amnio and all was fine.

I have another friend who, on her 2nd pregnancy, had 2 tests come back "Positive" and the "baby" is now a beautiful 4 year old girl with no problems whatsoever.

What ever you decide, good luck, and I'm thinking about you!

1:43 PM  
Blogger justmylife said...

I have been blessed with 3 healthy babies, I don't know what I would have done in your situation. I can see you have alot of blogger friends who care alot about you. As with many of them, my thoughts are with you and I wish you calmness while making your decision.

1:44 PM  
Blogger Kyla said...

Oh Cath.

We didn't know KayTar would be anything but normal untial way after her birth, so I didn't have to make those decisions beforehand. This is my two cents, though, if you WANT information, get information. Read, study, prepare for that IF...but you can do that without further testing. You can prepare for both scenarios with the results you have now. I've studied the hell out of many, many what-ifs for KayTar, steeling myself against their bleak and not so bleak truths, it helps me deal...but for some it does the opposite, all those informational what-ifs cause them to panic. But if you NEED more concrete answers to feel prepared, then get them. Listen to your heart, your stress levels, and your mind and do what you need to do to stay in control.

Damn it all. It is a long hard wait when you are living in the unknown. I know a bit about that and I don't wish it for anyone. Even though you know the result won't change your decision, it is still painful to be in the dark, left to play out the possibilities in your mind. I wish I was there to hold your hand and bring you chocolate. ;)

1:45 PM  
Blogger Bon said...

i am like you, in the sense that i like tests and prefer to know. but i have an advantage, in that i've been through getting results i didn't want, and having to cope. and so i no longer fear in the same way. i no longer fear the big unknown of the negative (positive)...or rather, i do in each given situation, but i do not fear what it will do to ME, how i will react in the face of it. which, the first time, is always there, lurking, huge.

it sounds like you need, given who you are, to know more. how much more - particularly if the answers keep unpeeling a picture other than the one you're hoping for - is the hard part. i think you can proceed on faith in lovenomatterwhat and still find out more, so as to shape that lovenomatterwhat, temper it with strength in the areas where it may need strength. i doubt that going back to blithe not thinking about it will be possible.

but i also think, no matter what you find out, that you will be able, in the end, to handle it.

1:45 PM  
Blogger Lori at Spinning Yellow said...

OK, had to stop reading and come back b/c I was crying too hard. First of all, I completely understand about always liking tests and information. That said, I did not do the screening tests for either of my kids b/c my dr. said "what will you do with the information?" and I realized that I would, like you've concluded, have the baby "no matter what."

Since you have made that decision (not to be taken lightly, of course) I guess I would say only further test if it will some how prepare you.

This post and your mother's day one are so close to my heart, my friend. I am crying today b/c of all you have been through and all you are going through now. And for myself, who understands all too well...

1:51 PM  
Blogger Don Mills Diva said...

I have no advice to give. I know that I would need to know but again I have never had to grapple with news like this. I only wish you strength and send my support.

2:01 PM  
Blogger Christine Klocek-Lim said...

I just started reading your blog a few weeks ago because you made me laugh. Now I must keep reading because you've made me cry.

I would have liked to know when my second baby was born. If I had been able to get tested; if there was any smidgen of doubt about the health of my son I would have taken the test and known ahead of time what I faced. Because it is easier to gather your strength in the days and weeks of knowing than it is after the fact, when you're tired from childbirth and no one is around.

Of course, I can say this answer with ease because I had no choice. He was born with a congenital heart defect and it was a surprise. He almost died. Happily he is and was fine now. The thing is, even if you get tested, you never know. You never realize your strength. It will surprise you. Pain is transitory and forgettable. Life is not.

Best wishes and I'm keeping my fingers crossed for you.

2:03 PM  
Blogger Kate said...

I've mentioned before that my youngest sister has muscular dystrophy - nemaline myopathy, to be precise. And there is a prenatal test that would allow me to determine, many months in advance, whether an unborn child of mine has it.

I have not taken this test, and will never. Because nothing in the world is more precious to me than my family; I would not change a single thing about my sister because to change that one big nasty disease thing would be to change everything, but even more important, SHE has said she wouldn't want to change. And I respect her own perspective even when it boggles the mind: "Really? You wouldn't rather be physically intact? Run a marathon? Jump on a trampoline? Lift an infant out of its crib?" No, she said, because I am surrounded by people who remember to tell me they love me. I think healthy people don't get told as much.

Couldn't you just weep? That kind of philosophy in a teenager?

So, no. No testing for that here. The only prenatal testing I've ever done was the quad-screen, but only after a careful conversation with my doctors: I do not want to know the results for Down's, or the other scary trisomy disorders which nothing can be done for. There is nothing physically to be DONE for those, so please allow me to be blissfully ignorant until something can be done, or reacted to, or processed. Let me be okay just a little bit longer, because anticipation of Bad Things does not make those Bad Things easier for me when/if they actually happen. Let me borrow a little more happiness now, in advance, because I'll need it later. But I do want to know about spina bifida, because there are in utero treatments. And I want my doctor to know about anything else, so that she is as prepared as need be to care for me and my child.

And my God, do I hate having to think about this stuff. And I hate that you're having to think about this stuff.

My closest friend did do an amnio, with both of her children, because she is of a mindset that knowledge is power, and she needs all she can get. And I completely understand and support her view... it's just one more example of just how crazy parenthood is, that there are a billion choices out there at every conceivable junction, and each of those choices can be right.

Be well. You're surrounded by a lot of love and strength, so if you need a while to feel week and dark, that's OK. We've got enough to make up for it.

2:13 PM  
Blogger Mrs. Chicky said...

I had a the beginnings of a genetic screening last week but found out (after a really long ultrasound) that I was ineligible to continue because the baby measured too big.

I don't get it either.

But I can continue with another genetic screening (quad screen) that has slightly lower percentages of correct results. Regardless, unless red flags are popping up all over the place I don't think I'm going to have the amnio. If the results will show that I'm going to have a baby with Down's I don't think I'll do anything about it anyway. I'm usually the person, like you, who needs information but in this case I think I'd rather not know. I've been fighting myself about this for weeks but just over the past few days have come to this conclusion. Actually, it feels funny to write it down. It's that new.

Whatever you decide I'm wishing only the best for you. Our pregnancies are so close that my heart hurts for you so much. I hope you find some peace in whatever decision you make.

2:20 PM  
Blogger b*babbler said...

I don't have personal experience in the making of these decisions, but I've recently watched very close friends struggle with these choices. For them, the initial ultrasound came back "positive". They were sent for another ultrasound that came back with negative results. They ultimately decided to have the amniocentesis.

Unfortunately, their results were quite different, and found they were dealing with Trisomy 18, and a severe case. The one thing they did say is that they were glad to have the information, although it wasn't the information they hoped or wanted. It allowed them to come to terms with what would happen, instead of being taken by surprise.

I guess from my perspective, you've already made your decision and therefore the information won't change your mind either way, but it will allow you to prepare for the possibility of a different birth, for the possibility of different needs when you get home. I guess, also, that it will change your birth experience - there won't be that moment at birth of is-it-or-isn't-it, but just the delight in the baby you wanted (which I'm sure you would have either way, but it won't be superseded by that pause, however short, before the announcement).

Sorry for the long-winded comment! All of this is my long way of saying that I would prefer the information, as I like to be well-armed. I hope you find peace in whatever decision you make.

2:21 PM  
Blogger bubandpie said...

The great thing about asking for advice is that the replies often show you what you WANT to hear. I hope this is doing that for you. (No advice of my own to share - just a hug.)

2:23 PM  
Blogger Laura said...

Hi. I had an amnio (advanced maternal age) and it did not hurt at all. My husband almost fainted because the needle is gigantic, but it did not hurt at all.

I was glad I had it.

Trust your gut.

2:25 PM  
Blogger Laura said...

Hi. I had an amnio (advanced maternal age) and it did not hurt at all. My husband almost fainted because the needle is gigantic, but it did not hurt at all.

I was glad I had it.

Trust your gut.

2:26 PM  
Blogger crazymumma said...

When I was pregnant with bigirl I chose no testing at all. But we did opt for the ultrasound because we wanted to see.

And when we got the call that something had shown up on that ultrasound that pointed to Downs or a spinal issue, (the one wwe take Floic Acid for). So I then took the maternal serum screening and another ultrasound.

I refused amnio or anything else more invasive. Partly out of fear of the needle, but mostly because we had already made our decision.

We were already deeply in love with our child and had already decided we would have her no matter what.

And she turned out not to have any of those health concerns.

But that was our choice. Others make different ones...and those are good as well.

2:35 PM  
Blogger Delilah said...

I don't comment often, but I do read your blog on a regular basis. First, let me just say that what you're going through is scary, and it really sucks. Second, I want to share my experience with you.

I had the screening done when I was pregnant with my first. The results came back with a 1 in 75 chance for Down Syndrome or other chromosomal abnormality. They recommended an amnio. I declined. I felt the risk of miscarriage was not worth it. We were going to have this baby no matter what. We opted for a Level 2 ultrasound instead and everything looked fine. Kate was born a healthy baby. Turns out she was diagnosed with autism at age 3 but that had nothing to do with the test results. She's doing great, and I wouldn't change a thing about her. To me, she's perfect.

I've since had 2 other children and did not do the screenings with either of them because of the stress.

I will be thinking about you in the upcoming days and weeks.

2:36 PM  
Blogger Niksmom said...

Catherine, I haven't read the comments yet so forgive me if I sound redundant...

I had the amnio...didn't hurt but scared the crap out of me watching on the ultrasound. We already knew Nik was SGA (small for gestational age) and had all sorts of genetic testing. Based on the tests, other than his size, and based on the knowledge we had at the time...he *should* have been a perfectly healthy full-term baby.

Ironically, my first OB (long story but I had to change docs 2nd trimester) called everything exactly as it happened...and he NEVER did any tests!

I guess what I am saying is this: tests may predict possible outcomes but they are never fool-proof. If you need to know the most likely outcome or if you need to prepare yourself emotionally then have the tests.

In the end, what matters most is taking the utmost care of yourself so Sprout has the healthiest environment until birth. Afterward? IF it comes to pass that there is an anomaly, there will be people not only at the hospital and in your daily world but online, too, who will help you find your way and learn what you need as you go along.

There is no way I could possibly have prepared myself (either intellectually or emotionally) before Nik was born for what is now the day to day reality. I have learned as I go along and found much love and support from mothers who have walked the road before me...and beside me.

No matter what, you will love your child and you will find the grace, courage, strength, and knowledge you need.

2:42 PM  
Blogger Piece of Work said...

Hey Catherine. I have way more information about all of this stuff than I want to. i don't have time to go through all your comments and see if it's already been said, but I'll email you at the basement address. Hang in there.

2:44 PM  
Blogger MamaMichelsBabies said...

They say knowledge is power, and indeed it is. You know you want this baby, you've made that decision of "no matter what". I refused the further testing myself when I had false positives, I didn't want to know, I didn't want for anymore nagatives to taint the pregnancy like a virus but I did research and study the what of it so I did know what to expect if the "if" became true.

By not knowing, and knowing there was a chance for the baby to be "normal" (what kid is ever truly normal anyway, not my inmates, they just aren't diagnosable really.. hrm) made the pregnancy easier somehow, I can't explain it clearly I think. There still was a chance, and I didn't want that chance to be snuffed out for me while I was pregnant. The reality of it would soon enough come if that's what was to be. But I didn't want to start out at a disadvantage, so I did learn about it, I did memorize every sign, every symptom, everything I could about it so I knew I was ready for whatever was to come.

Do whatever is right for you, it isn't an easy decision by any means. Trust yourself to know what works for you and your spouse.. *hug*

2:46 PM  
Blogger Julie Pippert said...

C, good luck, best of luck...and loads of support as you go forward, in whatever direction you choose.

In answer to your questions, when the OB mentioned testing to us, I had two questions:

1. What is the point?
2. Will you be able to do anything to change the outcome based on knowledge?

His answers:

1. To know.
2. No.

They would not be able to treat any conditions found and would not alter the birth plan.

The only thing to be gained was (a) knowledge and preparation and (b) opting out of the pregnancy (as he put it).

My husband and I do not believe in opting out. That's just us.

And having just watched a good friend go through pregnancy prepared for a dire outcome due to prenatal test results only to birth a live and healthy baby---we felt knowledge wasn't something we wanted and we'd cross whatever bridges we found when we got to them.

That's just us. It felt sure to us and right when we made the choice. And luckily we had no occasion to second-guess it.

That's just luck.

Hang in there. Dig deep, listen to your heart and go there.

Good luck.

Julie
Using My Words

2:50 PM  
Blogger pnutsmama said...

b*babbler said what i was going to say. first, i wonder how many more non-invasive tests are you eligible for to try now? we'll be starting our quad-screen in a few weeks, the blood/US/blood screen for trisomy etc. at the very least could they schedule you for a higher level US?

for us, it's never been about "lovenomatterwhat"- that's a given, but like you i need to know what i could be facing- prepare myself as much as possible and avoid surprises. for me it's not "i don't care either way" it's "what can i do for my child and my family from this point forward to give us the best and most appropriate medical care and us the peace of mind and strength to get through this."

in my family, we've had a few cousins who have had both genetic abnormalities and developmental disabilities. i doubt any of their births were questioned (even the ones that died during or shortly after birth)- but seeing my families experience that i'd do whatever testing i could to find out if this baby is at risk for anything, then seek out the most appropriate pediatric practice that specializes in whatever health problems may be involved (cardio, neuro, pulminary, etc.)- i'd want to meet with future pediatricians to know what we should expect now and from the future- not to freak myself out and stir up a drama, but to prepare myself and my family for the reality we may be facing. which for me, would be much easier on me than being blindsided the day or days after the birth.

the very best to you and your family. i wish you peace and strength.

2:52 PM  
Blogger Mary Joan Koch said...

My heart goes out to you. I had my 4 daughters 34, 32, 29, and 25 years ago. I never had an ultrasound; I never had any diagnostic tests during pregnancy. I was 36 when I got pregnant with my 4th; after 35 amniocentesis was suggested by many obstetricians. The family practitioner who was delivering my 4th at home didn't pressure me in the least. I wasn't interested in having the procedure. The outcome would not have changed our minds about the baby. I did not want to spend the rest of my pregnancy worrying about how I would cope with a hypothetical Down's syndrome child. I was sure I would love the child I gave birth to. I did not want to risk the slight chance of miscarriage associated with amnio.
Throughout my daughter's pregnancy, I have been upset at how many test and ultrasounds are now considered standard care.

2:53 PM  
Blogger Janet said...

I have no advice, as I haven't been where you are. I wish you strength and peace with whatever decision you come to.

xo
janet

3:02 PM  
Anonymous Momish said...

I haven't had a chance to read all the comments above, but wanted to add that I had an amnio with no issues, no problems and no pain. I wanted and needed to know before I could even begin thinking about the consequences or actions or anything. I too like information, knowing the facts. I find it easier that way, then guessing and worrying myself endlessly.

Whatever your decision, I'll be thinking about you.

3:02 PM  
Blogger ALI said...

my answer is completely unclear-i personally chose not to have the prenatal screening at all, because of the "no matter what". i hate to talk about faith issues, but i personally felt whoever we got we were meant to have.

the other side of the coin however, is that it gives you time to have early intervention in place, research downs and what it includes.

i worked for 4 years in a group home with disabled adults-i don't know if this is any help, but all of the individuals with downs that i have had the pleasure of knowing have been sweet wonderful people!

3:11 PM  
Blogger Farrah said...

A friend recommended your blog to me as I have been through your pain before. I had a "bad" ultrasound (not Downs, something potentially life threatning to baby) and they did an amnio. Ours too was right around Thanksgiving. The amnio was not physically painful and the info didn't help us in the end but I would have wanted the info just the same. When this was happening, I felt helpless and like I had no idea which way to turn. I am like you in that I like information and at least it made me feel like I was trying to do the best for me and baby. Our result was tragic but I carried that baby to the end none-the-less. I think if having the information is at all appealing to you that you should do it. It may not change your next step, but it may just make you feel more prepared to take it whatever it is. Yes or no, you are keeping your baby. But a little more info at this point could help. Just my thoughts. I am certainly praying for you and your family and will be checking back to get news. I will be praying for rest for you, that you would have a clear mind and be able to enjoy the holidays.

Here is a link to a recent post I wrote about my own story if you are interested.
http://babyloveslings.blogspot.com/2007/11/my-life-is-different-because.html

3:11 PM  
Anonymous Chris said...

I had amnio and it DID NOT HURT AT ALL. Hope that puts a little bit of the fear away. It really was only pressure, no pain. (And yes contractions can hurt so I am not just being brave.)

3:37 PM  
Blogger The City Gal said...

My mother is ateacher at a daycare.

I visit her every now and then and hold the kids, play with them and imagine myself as a mother one day.

She became in charge of the Baby Room since 3 months ago. Every time I visit there are beautiful smiling babies that want me to hold them.

But...There is only one I only want to hold. She is quiet. She doesn't move too much. She can't make a noise. She is different. Her eyes don't move in sync. But...

Everytime I visit, her eyes light up and when I hold her, she only holds me tighter. She has a warm presence and she just means LOVE to me.

I'll never know what she thinks or how she feels. She can't communicate.

But, how can you say she is not the best thing ever happened to her parents?

She is LOVE.

3:39 PM  
Anonymous Anonymous said...

It was nearly two years ago that I was told that my unborn baby had cysts on his or her brain. Apparently, this was a sign of Downs Syndrome, or so we thought. Shortly after the first of the year, we went for our first Level 2 ultrasound. Prior to the ultrasound, our genetic counselor told us that we would need to decide that day whether or not to have an amniocentesis. I lost it. Not only was their something “wrong” with my baby but I was going to have to decide whether to risk the possibility of miscarriage immediately versus knowing if my baby had a potentially life threatening genetic disorder. It wasn’t Down Syndrome that we were facing but a different chromosomal disorder that would have left our child in a vegetative state and most likely would have killed him or her within 5 years.

I tell you all of this because although the situation looked dire at the time, I am not the mother of a chromosomally “normal” 18 month old. You just never know.

By the way- we did not have the amnio that day nor did we have additional ultrasounds. In the end, God gave us the child we were destined to have.

3:43 PM  
Anonymous Anonymous said...

Just to clarify, I mean to write:
I am the mother of a chromosomally “normal” 18 month old. You just never know.

My prayers are with you.

3:45 PM  
Blogger karla said...

Like you, I thrive on information, sometimes though, to a fault.

Personally, and this is just basing things on my experience because I held my first born in my arms and watched her die, and then my second pregnancy ended in a miscarriage, I was all about the tests when it came to my son's pregnancy, as long as they posed no additional risks.

I guess I felt like I was already a statistic and I was not willing to become another one. So, we forged on with lots of ultrasounds, which helped fill in the blanks, and this helped me feel better equipped to deal with all of the those "what ifs" that kept haunting me.

I don't think there are any right or wrong answers, but wishing you much strength and peace as you face these difficult decisions.

3:54 PM  
Blogger Karen said...

I don't know Catherine, and have never done this - just grace and peace to you this week.

3:57 PM  
Anonymous anna said...

When we "failed" our quad test, we didn't opt for an amnio. Had the level II ultrasound instead, and it confirmed that the baby didn't have spina bifida, and that things were far more likely to be ok than we thought. There are a lot of soft markers for Down's and other trisomies that can be found on the level II ultrasound: if you're worried about pain and needles, this might be a painless source of painfully-needed information.

if you aren't past your 13th week, there's always CVS: I just had one done with baby #2, and it was painless, and over in less than 4 minutes. A week later we knew the results.

lots of hugs to you.

3:59 PM  
Blogger Corey said...

OK, so you already have tons of advice so I'm not sure why I'm adding my 2 cents but here it goes. I say go for the amnio. I had one and the thought of it was worse than anything. The Novocaine hurt the most and I didn't really watch the screen. It didn't take too long and I didn't have much pain, if any, or cramping afterwards.

I say go with the amnio because you do want this baby No Matter What. It will end the worrying/unknown stress, one way or another, and give you a better idea of who the little person is living inside of you. Whatever the results, you will embrace this baby with love. Even if the news is bad, I bet you'll breathe a sigh of relief to just know.

Again, I don't know you other than what I read here on your blog, so I'm sorry if this is assvice.

Good luck with whatever you decide.

4:00 PM  
Blogger margalit said...

I chose not to have any invasive testing. I did do the Level 3 ultrasounds and the nuchal translucency test because I was 30 at conception, but honestly, I didn't want to know. I said then that I would take whatever God gave me.

God gave me twins, one with CP, a brain bleed, and some pretty severe learning issues. One with bipolar disease and ADHD who is having a terrible time right now.

Both of them looked totally and completely "normal" in utero. Like I said, whatever God gave me, I would deal with. To me, the testing was superfluous because I knew I wouldn't abort (I'm avidly prochoice but wouldn't have an abortion by choice) after 4 miscarriages in a row.

I wish I knew how to help you. All I can say is, if you think you can handle anything, bag the tests. They'll only make you miserable and paranoid. UNLESS you're the kind of person that needs to know in order to plan ahead. I'm not, so the tests weren't going to help me at all!

I know, this is absolutely no help whatsoever!

4:04 PM  
Blogger Jenifer said...

I wish I had some great wisdom to impart. I have never been in your shoes, but my gut is telling me that the information - not matter what it tells will relieve your mind. The risks of amnio seem so high though which makes it all the harder to decide.

Go with your gut...wishing you peace and strength.

4:12 PM  
Blogger mothergoosemouse said...

I almost always take all the information I can get.

With Tacy, I had an amnio on the maternal-fetal medical specialist's advice after finding the Down's marker on the ultrasound. The procedure was not painful, I rested for a few hours, and received normal results two weeks later. My AFP (quad screen) had been in the normal range.

With CJ, I had a normal quad screen and a normal nuchal translucency. Since no markers surfaced in those tests or on the 20-week ultrasound, I did not have an amnio.

With this baby, I had a normal quad screen, a normal nuchal translucency, and no markers on the 20-week ultrasound. While I am old enough that an amnio is now covered by insurance, I decided not to do it. I felt as if I had all the information I needed.

It boils down to what balance of information, regardless of whether it's good news or bad news, will make you feel most comfortable and prepared.

As always, thinking of you.

4:24 PM  
Blogger Jozet at Halushki said...

I was 39 with the last pregnancy, and everyone was pushing for amnio.

I knew that there were risks of false positives for the triple screen, and knew that if I got a false positive, I'd go for an amnio.

The head game I played with myself was to not have the triple screen, and to just have the levle 2 US. After the US, the doc told me that everything looked great, but that this still meant...well, almost nothing. He was really pushing for the amnio.

I didn't get the amnio. I figured that any big abnormalities would show themselves and we'd deal with it. So I hoped for the best, but prepared myself for the fact that even the tests are wrong in both directions at times.

The baby was born perfectly healthy, except for a rare 1 in 60,000 metabolic disorder.

It's hard to look at your infant - in utero and out - and think "he's not perfect."

But, then again, none of them are by anyone's definition other than the definition of the heart. I don't mean to minimalize the very bad health problems that some children are born with or that occur later in their lives. But there are never any guarantees. There is only this moment. And that has to be perfect enough for now.

4:29 PM  
Blogger Piece of Work said...

I can't find your email address, so:

First, aren't you right at the perfect time for a CVS? They do those at 10-12 weeks, and it is very similar to an amnio, in that can tell, definitively, what the genetic make up of the baby is. If you could do that now, instead of having to wait unitl 16 weeks to do the amnio, that would be better, no? (I'm not sure how far along you are . . )
I had a CVS with my most recent pregnancy (that ended in m/c this Sept, but not because of the CVS) and it was actually surprisingly easy. I decided to do the testing mostly because my husband really really wanted us to, and because I'm an old lady (I'd have been 38 when that baby was born.) I don't regret the decision, even though we lost that baby (the test results came back after the loss--genetically normal). It depends on what doctor you see, but most places have really good odds--at my practice there was only a .5% chance that the CVS would cause something to go wrong; I think the national average is around 1%. It's a simple test, with a needle, that goes through your abdomen or through the cervix, depending on the position of the baby. It takes about 3 minutes, they numb the area first, and honestly it wasn't bad AT ALL. I couldn't look of course, not at the doctor or at the ultrasound machine, so I just closed my eyes and listened to the doctor (he was talking a mile a minute, which actually helped distract me.)
As for the amnio, I had one of those with my first. As I mentioned yesterday, I failed the AFP (or Triple Screen) test, and they gave me terrible odds--1 in 13 chance of Down Syndrom, when the worst odds they ever give are 1 in 10, and where they suggest further testing if your odds are worse than something like 1 in 250. The further testing they suggested was the level II ultrasound, and that's where they discovered a "soft marker" for Down's. At that point they told me it wasn't looking good. In fact, all the doctors--the genetic counselor,the tech, the specialist, they all looked like they'd never seen something so terrible in their life. So I agreed to do the amnio, even though I had already decided that if the baby had Down Syndrome, we'd still keep it. Mostly because I wanted to know, but also because many Down babies have heart and other problems and if so, we'd want to have specialists in the delivery room. And also because my husband really wanted to know. The amnio itself was traumatic, but I think that is mostly because I was so upset at the time--we did it immediately after we got the bad level II result, and as I say, all the doctors were acting extremely solemn. The amnio is a needle through the abdomen too, and there's no reason it should hurt more than the CVS, as it's the same test, but I will say that it did hurt. I was having contractions while he was trying to insert the needle, probably because I was so stressed out, and that is what made it so difficult. Then I passed out in the middle of it so he had to yank the needle out, give me smelling salts and start all over. Good times. After my experience with the CVS all I can say is that if you really try to relax, close your eyes and think of something else, you'll do better. And it's very quick--only a few minutes. Just remind yourself of labor or any other painful experience--if you got through that, this will be a piece of cake. It's only a twinge, or maybe a bit more pain than that, but not much, and it's over VERY quickly. You can do it.

Then comes the hard part, waiting 10 days for the results. But you will get through it, and the nice thing for you is that you have all of us to help you. You will survive this, you will.

Thinking about you . .. (and apologies for the novel comment)

4:32 PM  
Blogger Piece of Work said...

Oh, and I'm sure your doctors have told you, but the risk of miscarriage with amnio is very low, too--I think around 1%.

4:35 PM  
Blogger LSM said...

When I was pregnant, the triple screen was known to have such a high level of false positives that I declined it. Now, I know the tests are more accurate because of the combination of blood work and Level 2 ultrasoud, so I'm really not sure what I would do if I were pregnant now.

That said, my sister just went through the exact thing you're experiencing. Her test results dropped her chances of having a child with Down's from 1 in 450 to 1 in 99. Her choice was to go to a specialist for futher ultrasound screening. After two screens 4 weeks apart, their recommendation was to just continue monitoring as there were no visible markers for Down's apparent. If there had been a visible marker, she was going to do the amnio. Like you, they were planning to continue the pregnancy either way but wanted to have the information to be prepared.

I was so glad to see your post today. I know there's no way I would be able to "just not worry about it," and you seem to be working through it in the best way possible. I'll be thinking about you!

4:41 PM  
Blogger Lisa said...

Just the thought of the whole amnio test makes my palms sweat. We've decided we're finished having babies. SO I don't ever have to think about this.

But whatever your decision, please know my heart is with you.

4:43 PM  
Anonymous FishyGirl said...

As I mentioned yesterday (or was it the day before?) with Sunny we were in precisely your shoes, and I cried and cried. Somewhere along the line in my grief, BigDaddyFish said "Mary, it doesn't matter. It is our baby, and we love it already." And that kinda slapped the sense back into me. It was our baby, and we loved it (her) already. I know someone who lost her healthy baby boy due to her amnio, so for us, any knowledge we would have gained wasn't worth the risks. I got online and learned all I could about Down syndrome, and learned that there is nothing that can be done ahead of time to deal with any of the health problems that may be associated with it, and nothing that would affect the birth. So we had several level 2 ultrasounds, which showed NO signs of Down syndrome. Although there was always a nagging thing in the back of my mind about what COULD be, I chose to pay more attention to what we could see on US, what we knew in our hearts, that we loved her already, nomatterwhat. (BDF also reminded me that our risk of 1/70 odds of a baby with Downs really meant 69 chances in 70 that the baby wouldn't have it, which also helped keep things in perspective)

I have always been at peace with my decision, and strongly feel I would be at peace had she turned out not genetically normal. She's our little girl, the one we were meant to have, the one we have loved from the moment of that shocking pink second line on the pregnancy test.

I hope this helps, Catherine. Peace.

4:45 PM  
Anonymous Dawn said...

When I found out I was pregnant at the age of 35, I skipped all the other test and went straight for the amnio. I just wanted to know everything I possible could. Everything was fine, but I don't regret for a minute bypassing everything and going straight to the amnio. That was 2 years ago, and I'd do it again if we decided to have a second child.

I don't even remember any pain. The specialist had the baby up on a monitor so he could watch her while he took the amnio, and I was just so amazed to watch her scooting around. Seriously, the discomfort is minimal to nonexistent, especially with the smaller needles they use these days (I laid in bed the afternoon after having the amnio, and went back to work the next day). Same thing with the statistics you hear - the Big Scary Miscarriage Stats are mostly outdated, from the 70's; the miscarriage rate nowadays is MUCH lower, and even lower than "average" if you go with a specialist.

I can't speak for you, but the reason I skipped the other tests and went for the amnio was for peace of mind after hearing about "false positives" and such. Either way the tests had turned out, I wanted to have time to mentally prepare. If I were in your shoes, I'd go for the amnio.

5:01 PM  
Blogger B said...

I went through my first pregnancy with a midwife, there were minimal tests, not a lot of information or education and it was wonderful. Ignorance? Maybe. Bliss? Yes in-deedy.

My second and third pregnancies with OB-GYN's each yielded their own medical scares. Both stemmed from ultrasounds… my second pregnancy showed an increase NT measurement which sent us 80 miles to a larger city with better equipment, higher trained professionals, more answers. It was a tremendous amount of stress and for five of nine months I was quite unhappy. Even though our daughter is chromosomally normal.

WIth my third pregnancy I had a questionable ultrasound and stayed in town for a second opinion which was the opinion I wanted to hear so I have said to hell with the remaining tests. I did not do the quad-screen or any other testing. My baby is due in early February so only time will tell if the little tyke is "perfect."

What an odd word. "Perfect." Even babies that appear perfect at birth can have a slew of problems that don't appear until toddlerhood or much later. And isn't that what this delirously wild ride of raising children is? The joy, the pain, the unforseen. Every baby is a gamble even the "perfect" ones.

5:03 PM  
Blogger toyfoto said...

We went through this agony in a later stage with Thing 2. Found out at 36 weeks he had "a marker" for down syndrome.

He was born perfectly healthy, except for a wonky kidney (which was his marker).

Thing is, and I don't want to preach, but Down isn't the worst thing that can happen. Those kids are just. Well. Beautiful.

There are worse things prenatal tests can't tell you (and will never be able to tell you.) Like Your kid may someday become a Republican.

Seriously, though. I wish you good, and happy news.

5:08 PM  
Anonymous Tory said...

I am delurking to send you support (which you clearly have in spades). You have handled this hard time with grace and described your situation eloquently and so openly. I have been in a similar, but not identical, situation. Ultimately, I don't think it matters what I did, what your friends did, what anyone else did. The stories do help you to see your options and hear some outcomes, but at the end of the day, you and your husband will have to decide whether the having the knowledge now is worth the risk. Meet with a genetic counsellor and your doctor and you and your husband will make the choice that is best for you. Just as an FYI, I understand that the risk of an amnio in the city I think you live in is significantly lower than the national risk (your doctor can tell you if my understanding is correct). I also think you can have really detailed ultrasounds looking for markers in advance of deciding about an amnio/CVS (although that was done by a friend of mine in the U.S. and wasn't offered to me here, you could ask). I wish you the best. You are clearly part of a fabulous family that will be that much more fabulous when Sprout makes his/her appearance!

5:20 PM  
Blogger glycerin said...

All my tests were okay, but I still had the amnio. If it is done by a Fetal Medicine Specialist, the odds of miscarriage are much lower. The amnio did hurt a little bit, but it only lasted 2 minutes at the most. My doctor's web site has a very informative video you can watch about the procedure and the risk to your baby. www.fetal.com

Hang in there. Huge hug!

5:31 PM  
Blogger Aimee said...

You can proceed on faith in lovenomatterwhat AND be informed.

My doc always does quad screens and my AFP levels were high. He did an ultrasound that confirmed an abdominal wall defect, but could not confirm whether it was a gastroschisis or an omphalocele. He referred me to a perinatal specialist. He perfermed an amnio. I think the reason I felt pain was nerves. As several people have pointed out, the amnio risks are much lower than we've been lead to believe from outdated data.

Perinatal specialist saw some odd things and referred me to the Fetal Care Center in Cincinnati. Had a slew of tests (fetal MRI, more ultrasounds, etc.). They prenatally diagnosed my daughter with Beckwith-Wiedemann Syndrome.

A co-worker asked me outright why we had all the tests done since we "couldn't do anything about it anyway." Because of their diagnosis, we were able to educate ourselves and be proactive about her birth (which occured in Cincinnati so she could be sent straight to Children's Hospital) and immediate care.

Knowledge is power, in my opinion. I feel very much the way you do... I feel as though I could have written this post. If you'd like to take read part of our journey, feel free to read from April through September 2007 at
http://wvgurl.blogspot.com .

Yes, it's scary. Yes, there are so many unknowns.

BTW, my daughter, Abigail (Abbie) was born with some problems and we actually just returned home today after a few days' worth of follow up appointments in Cincy. I was thinking of you and made it a point to check your blog as soon as we got home.

But her smile makes 14 months of trying to conceive, including 4 cycles of Clomid, all the pre-natal testing and nerves so worth it. She is my beautiful little girl and the answer to my prayers for another child.

Good luck. You'll continue to be in my thoughts and prayers.

5:41 PM  
Blogger Beck said...

I never had any of the pregnancy tests that you're describing, but I did have a mid-pregnancy hemmorage that they thought killed my baby for 24 hours.

He's now five.

6:01 PM  
Anonymous Heather said...

I'm so glad you have all these wonderful people to give you great advice. Thinking of you, still have my fingers crossed.

6:09 PM  
Blogger Not Afraid to Use It said...

I just wanted to send a hug your way.

6:10 PM  
Anonymous Sharon said...

I had an amnio, simply b/c of my age and the fact that we were not 'no matter what' people. My husband and I were in complete agreement.

The amnio hurt VERY briefly. I made it a point to practice some deep breathing beforehand (I'm not a meditation type person), focused on a point outside of my body and started relaxing all of my body (shoulders, etc.) and I think that helped. The dr. waited til I was ready. She was very experienced in high risk and I checked *her* miscarriage rate which was extremely low. I was comfortable with the whole procedure. We had a 99% chance that everything was fine and it was. Waiting the 10-ish days for the results was ok. Not great, just ok. Everything was fine. I don't regret it at all.

I think that if our baby had had a marker for a problem and I were a 'no matter what' person, I would have to have the info so that I would know that we, the doctors and the hospital were as prepared as possible to give our child the best possible start to their life, 'challenges' and all. If I were going to make the decision go through a pregnancy to have a child I knew may or may not have problems, I could not fathom not finding out the specificities of the problems because of my own fears and somehow having that decision negatively affect the baby after s/he were born.

I say all of this not having ever been in your situation, so I'll get off my 'high horse' now. I wish you all the best in the world. I hope your family and friends bring you a lot of strength right now. You seem to be the kind of person who trusts their gut instincts and you'll know what to do.

6:19 PM  
Blogger Susan Getgood said...

I was of advanced maternal age when pregnant with my son (37) so had the amnio. As i recall, it was discomfort more than anything else. And the next day I had to drive to upstate NY to give a talk, because no one at work knew I was pregnant and no one else could do it. I felt fine but as a precaution my husband took the day off and drove me.

Good luck with whatever you decide.

6:20 PM  
Anonymous Diane said...

This is a tough moment for you and I know that you will make the right decision nomatterwhat.

My daughter (Our third child) has a developmental disability that presents similarly to downs but she looks normal. There are no tests to predict it. We didn't know she would be anything but normal. When we found out she was different (initially they told us mental retardation) I really wanted to blame someone. My husband told me that people have children with issues all the time, perfect pregnancy and then... surprize! It really helped me to get over it and focus on our daughter and what she needed through therapy, educational supports and family.

One of the clients we serve at my agency has downs. He is the sweetest man and has a delightful sense of humor and compassion. I might not be saying that if his mother had done things differently. You see he's 51. Back in her day, they took the Downs babies to institutions. They tried to take hers. She refused to leave the hospital without the baby. She went on to have 4 more children and he grew up in a great home with tons of love. He's lived with his parents all his life. I shudder to think what his life would be like had his mother been less strong.

Now that I've shared all this my advice is to do what's best for you and the baby. If you feel the tests will help you prepare for the needs of the child, have them. If you don't see the point, the outcome will be the same anyway. It isn't like you will choose a different path. For years, I allowed my daughter to be tested and labeled so she could recieve services. I no longer allow it since it doesn't change the outcome. BTW, my daughter is 17 now and should graduate from high school next year. She wants to study theatre at the local community college.

All my best to you and your family. I know you'll make the right decision for you.

6:57 PM  
Anonymous Glennia said...

"...and that child will be perfect for us..." That is the mantra, dear, that is the mantra. Whatever comes your way, you have the strength and grace and love to face it, to deal, to be the best possible parent for this child and Wonderbaby.

I had the amnio. It didn't hurt because I didn't look. I focused on the monitor and looked at my baby swimming around peacefully inside me. I felt a pinch, a little more than a blood draw, but nothing excruciating. I think the anxiety before the test was way worse than the test itself. After that, you should relax, read a book, lie in bed, drink some tea. Make HerBadDad give you a foot rub. Take care of yourself. Watch the most ridiculous movie you can think of. Cry if you need to. And remember, "...that child will be perfect for us..." for all three of you to love and hold in your hearts.

I don't know what else to say. Good luck. Love to you.

7:21 PM  
Blogger Maggie said...

I am about to blog something to you because it is too long for a comment. Check out http://okayfinedammit.blogspot.com in ,say, about 30 minutes.

:)

7:24 PM  
Blogger Mary said...

From a complete stranger, one new to blog land but who had a third child at (gasp) forty.

I had the test. I wanted to know. I wanted to know so that if I had a child with Down's, I could face that head on, prepared -- or, I could decide not to have that baby.

My mother worked in a state hospital as a teacher, caring for adolescents with Down Syndrome and many other physical and mental disabilities. We routinely had her students home with us for weekends and holidays.

I saw the joy and love these children brought. I saw the hard, hard work of the caregivers.

So I wanted to know. To prepare, if that was our path.

The amnio really did not hurt! It was just a moment of pinch-- really. Nothing. But I don't mind needles. The risk of miscarriage was small enough that I was okay with it.

The only thing I know is that this decision sucks. The whole thing is unfair and ugh, ugh, ugh.

When I have a terrible decision to make, I know I have made the right one when I feel it in my body -- when I tell a friend or my husband or myself, "I'm doing X" and the words feel good, in the bones.

All best wishes, strength, clarity, love to you,

7:45 PM  
Blogger Mommato2 said...

Hey there....my heart goes out to you. This post is really written from your heart, and is breath taking.

When we had the "positive" test results that we did not want, our worries were cleared up with a more detailed ultrasound. We had decided that we would have the amnio if necessary.

My doctor at the time had one during her last pregnancy.

Not that it would affect our decision, like it will not affect yours, but I just needed to KNOW. I probably would have ended up in the mental hospital running through the long list of "what ifs".

Thinking of you, and praying for you as you deal with decisions decisions.

8:02 PM  
Blogger chichimama said...

With my son, I didn't have the tests after red flags were thrown up, and I spent the entire pregnancy stressed out about the what if's. (It all turned out OK).

With my daughter, we had a totally different set of red flags, and we had all the tests done. (It also turned out OK).

I much preferred having all the tests, but that is because once they turned out OK, I could enjoy the rest of the pregnancy. Although I a fairly confident that had they not turned out OK I would have still been less stressed out than I was with not knowing with my son.

But that is just me, my husband was much more comfortable with not doing the tests than doing them. But I a a planner, and if there was something wrong I wanted to plan and prepare as much as possible so I wasn't faced with a new baby and having to find specialists and support and whatever else we might have needed.

Again, thinking of you and hoping for the best possible outcome for you and your family. If you need anything, please email me.

8:49 PM  
Blogger Candygirlflies said...

Oh, Catherine... I am so sorry you are going through this hell of worry and uncertainty.

Please do remember that there is still a good chance that Sprout is absolutely fine.

I like the comment above, where someone said that you can lovenomatterwhat, AND be informed. I, personally, share her view.

When early ultrasounds came back indicating a possible problem with my second baby, I decided that I needed more information. I proceeded with further testing, because I wanted to be certain that I would be properly prepared to care for my baby, nomatterwhat. I wanted her to have the best care, and the best life I could give her, and I saw the chance to get more information as an opportunity to prepare things for her... to educate myself, get all my "ducks in a line", and assemble the very best people and resources to help us.

I was so glad to have the test results... It helped to quash the fear, and the endless "what-if".

In our case, Child Number Two was born happy and healthy and perfect. But even if she had turned out to have special needs, I would have been ready to welcome her with every bit as much love!

Have faith, Catherine. We are all here for you, and thinking of you and your beautiful baby.

xo CGF

8:58 PM  
Blogger Heather said...

I had to do a mandatory Cystic Fybrosis test when I was pregnant with my daughter. I found out that I am a carrier for the disease and that there would be a 1 in 4 chance that my children would have CF if my husband was also a carrier. I felt terrible knowing that it was a possibility and we paid the $200 to have my husband tested as well. It turned out that he is not a carrier, so there is no chance our kids will have CF.

After the agonizing between those two tests, I've declined all further testing in all 3 of my pregnancies. I figured I would be continuing the pregnancy no matter what so I didn't need to test.

That is what my doctor asked this time as well. She said that the only reason she could see for testing is if I would possibly want to terminate the pregnancy because of the result. That isn't something we'd do, so no testing for us.

You'll make the best decision for you and your family. No matter what you decide, it'll be right for you.

9:16 PM  
Blogger something blue said...

Both my pregnancies came with red flags. We only went with amnio the first time around at Mount Sinai. They have much lower rates of miscarriage then the averages that are given.

I was expecting it to be very painful therefore I was extremely nervous but it was over quickly.

Afterwards there was some minor cramping as I spent the day on the sofa having a movie marathon. The hardest part was waiting the three weeks for the results.

Hugs to you. I'm here if you want to chat.

9:22 PM  
Blogger Major Bedhead said...

I always said that if I did get a bad test result, I would do the amnio, just so I could be prepared, so I could gather information and find resources and keep my brain busy with something. I think the not-knowing would send me around the bend.

10:06 PM  
Anonymous Anonymous said...

There was another blogger--just last year--whose initial tests indicated what yours have. Not a diagnosis...but...a suggestion that he might have Downs. There were many long nights thinking about what to do...or not do after that. The baby was born perfectly healthy. No Downs at all.

What does this mean? I don't know. However, I have to believe that this baby is what he/she is. Nothing can change it. No test outcome can change it. But, it can prepare you. I deal badly with disappointment that comes in surprise form and if that happened to be a baby...well...I think I'd want to know that I could welcome him/her with my whole heart from the very beginning...rather than spending the first few days of his/her life trying to accept what I might have known earlier. But, that's just me. Those are my shortcomings as a person. You are probably much stronger.

With my last child I was open to amnio. We took it a step at a time. As long the blood tests and ultrasounds didn't show that we needed to do anything more invasive, we didn't. And we ended up not needing to. However, I was with a good friend when she had her amnio and she told me it didn't hurt, and by then I had had all of my kids and there was no reason to "protect" my feelings in that regard.

Do what you must, HMB. We'll support you no matter what. Expect the best and...at the same time...plan for something less than that. Thinking of you.

Wordgirl
http://wordgirl5.typepad.com/half_of_the_sky

10:21 PM  
Anonymous Anonymous said...

I had the amnio. In fact, I had the amnio before I had any other tests. But I was 37, and I had been taking drugs for epilepsy - which increased the risk of all kinds of problems. I had the amnio, because I, like you, am most comfortable with knowledge. I figured any pain -- and yeah, it hurt a lot -- for about 30 seconds, was infinitely more preferable to NOT KNOWING for months and months and months. The latter was more than I could stand.
And I have a perfectly healthy, normal, 6 year old boy whom I love more than I can stand. I don't know, to this day, what I would have done had there been Down's or some other problem.

10:35 PM  
Blogger Stimey said...

I don't have any advice for you, but I wanted to let you know that there's one more person out here thinking of you. It sounds like you have incredible love already for your baby, and really that's what matters. No matter how your story progresses, I think you have the heart to succeed for you and your family.

10:47 PM  
Blogger Christina said...

I can't give advice on the amnio one way or another, since I've never had one. All of the tests were negative for both my pregnancies.

Were I in your situation, I might have the tests done to know for sure. But I'm neurotic and like to be as prepared as possible for whatever is coming. I can see the desire to not know, too.

No test result can guarantee our children will be perfect. Even if they pass every test with flying colors, you never know when something else will appear. Cordy's autism has taught me this. But they are our children, and we love them no matter what, imperfections and all.

11:13 PM  
Blogger JaniceNW said...

My last pregnancy, we passed all the tests. He was breech but other than that seemingly fine. When he started having sizures at 5 months old, part of me said I knew it! I knew something was off.

At first we thought he'd have seizures and be developmentally delayed and that just made us love him more.

When we found out he would die and soon, we crammed the love of a lifetime into 3 months.

If I had to go back, preconception, I'd do it all over again. We would not be who we are w/o Brennan's short presence. It's a 1 in 27 million genetic autosomal recessive disorder. I did not know and I feel no guilt for having him. The only reason we did not have more is that I don't think I could live through another of my children dying.

Ultimately his being here is worth the pain of losing him.

12:07 AM  
Anonymous momofthree said...

With my first pregancy at 36, I had an amnio. on my doctor's advice. He presented it as the best testing option and I wanted the information. I worried about the miscarriage risk but I did not find the procedure to be painful. I was told to rest for 24 hours afterward and did not have any problems, at least as a result of that amnio.

With my second pregnancy, at 38, my new doctor suggested the triple screen blood test. The results were such that I did not feel the need for more information so I did not have the amnio.

With my third pregnancy, at 41, still ongoing, the same doctor this time suggested the NT scan and associated blood work. Again, the results were such that I did not feel the need for more information and did not have the amnio.

Had my test results been different in pregancies 2 and 3, I am quite sure that I would have had the amnio. again. I would have wanted more information. I think the decision whether to have the amnio. or not comes down to weighing the risk of the procedure against the benefit to you of having the information. That process is going to be different for everyone. For me, I think the benefit of having the information would have won out.

I wish you all the best.

2:32 AM  
Blogger GIRL'S GONE CHILD said...

I know a lot of women who have had amnios. It was helpful for them and if you think it would be helpful for you than I say, do it. Fear of the unknown is so much more difficult as you must know. I firmly believe that the people we bring into the world arrive as little angels, meant to teach us and inspire us and fish our strengths from the depths within us that we cannot reach ourselves. So whatever the case may be, the little miracle growing inside of you is simply that and you know that. And so while tests will not change your destiny, or alter your future with this child, you will at the very least know. And by knowing what results you cannot control, you can focus on what you can (control.) I'm also here if you need to talk and am sending you love and kisses on your belly through the www.

3:46 AM  
Blogger Jenifer said...

Here's my 2 cents... I have never had an amnio, but have talked with many who have and they really say if you don't look it's not so bad.

Also I was talking about you with a fellow blogger (in real life, she and I are co-workers) and she has 2 daughters.... she had the SAME positive that you have had, had the amnio, and her daughter was perfectly normal. Second time around she ALSO had the same positive test, opted NOT to have the amnio, and her second daughter is ALSO perfectly normal.

I think if it were me I would want to know, if only to come to grips with the reality of it and prepare to love and nurture this child. But also take heart that there are a lot of FALSe POSITIVES and further teting might just put your mind at ease that everything is actually fine...

Thoughts and prayers are with you no matter what.

8:23 AM  
Anonymous barbara said...

I know this may sound odd, but I want to say congratulations. You see, I had a son born with Down syndrome 15 years ago and it changed my life and my family so much - and in such a positive way - that I can't imagine life without him. You can read a little about how I feel at http://www.mommylife.net/archives/2005/02/about_that_extr.html

I know it's hard not knowing. I also know moms who've lost babies following amnios, so my personal advice would be to not have it. But that's just me.

I really don't have time to read all the comments here - after Jonny's younger sister was born (with the normal number of chromosomes) we went on to adopt three other babies with Down syndrome, so I keep busy! - and so hope you don't mind my jumping in just to say that if you need someone to lean on, I'd be happy to be there for you.

This is a great time for kids with Down syndrome. With full inclusion, they make friends and change the world around them in many ways. Our local high school voted a girl with Down syndrome homecoming queen 3 years ago. And it's really not that unusual. Just google Down syndrome and homecoming queen (or king) and you'll see that these children are very much appreciated by their peers.

My son is in Boy Scouts, community theater, Special Olympics. He has friends wherever he goes - in fact, his sister says "He's more popular than I am!"

Just want to give you hope, that either way your baby turns out, it will be a happy ending. Please email me if you'd like at megamommy12(at)gmail(dot)com.

8:39 AM  
Anonymous barbara said...

Oh, also I have a web album with pictures of moms with kids with Down syndrome:

http://picasaweb.google.com/BarbarasMommyLife/OurLittleExtrasAMotherSDayDownSyndromeCelebration?authkey=FkN3NRQpYFY

I invite anyone to take a peek. I think the joy speaks for itself.

No matter what you decide, best wishes to you and your family!

8:49 AM  
Blogger Laural Dawn said...

When I had my first child I didn't want any of the tests. I refused a lot of them. But, near the end my midwife encouraged me to do one test I didn't want. I listened to her. I don't remember what the test was called (the birth was all a blur) but I do know that test basically saved my child's life because I had an infection I would have passed on.
But, that's a different kind of test, I realize.
I think, for me, it would help to know. I'm not sure about the amnio, but I would go for the 2nd ultrasound, partly because it really could rule a lot of stuff out.
I would personally have a hard time with the amnio because of the miscarriage risk, but having said that, I was the only person in my pre-natal class who did NOT have one. (all the babies survived the amnio).
That is really really tough. I don't have advice, and I'm not in your shoes. But I'm reading and I care. Hang in there.
PS My OB put me into a program where I speak with a social worker/psychiatrist - partly because of anxiety and risk for PPD. It's been really really helpful for me to have someone non-judgemental who has seen it all to just listen and help me figure some stuff out. Maybe that would help? Just ask your doctor or e-mail me and i can give you the contact info.

9:01 AM  
Blogger Baby in the City said...

Awesome comments. I have to say, it is posts and comments like these where mommy blogging shines. There is no other way to get this kind of amazing insight into an issue that must feel so utterly personal and unique. Wow. I love you all mommybloggers!

HBM, just wanted to say that any further positive test results will not tell you anything about how it's going to be. Think of all the books and doctors who told you what to expect with WB - it just doesn't go down that way. Remember all the anxiety, false sense of security and mindf*ckage that advice - that 'information' - can cause. Nothing will tell you what lies ahead.
But.
A test might be able to tell you what does NOT lie ahead; help take one concern off the list. After all, isn't that why you took the first test? To simply strike things off your list of concerns?

If it were me, I'd do it. Not because I'd do anything about it if I got a positive, but because if it is not really happening, then I wouldn't want to play make believe with my pregnancy, thank you. There are too many real challenges to bother getting sidetracked by hypothetical ones.

You are a strong girl, even if the needle DOES hurt, so what? Childbirth hurts, an ephidural hurts. You do what you need to do.

9:56 AM  
Blogger Jozet at Halushki said...

Laural Dawn

That was probably the Group B Strep Test. It's done around week 35 and it's to test for normal colonization of GBS, but there can also be active infections. Women who are GBS positive are recommended IV antibiotics during delivery. Some children do okay without the IV ABX, but others can crash very quickly after birth and it's a long road back to being okay...if there is a road at all.

10:05 AM  
Blogger The City Gal said...

Wow!

I read Barbara's comment, looked at the pictures and read her story.

I don't know what to say, except for "I am sorry, I didn't know".

These children are the best gift their parents could ever receive.

10:14 AM  
Anonymous Tina C. said...

I did a CVS test. It's done in the 1st tri-mester. They go through the cervix. It didn't hurt and I didn't bleed or anything. It was over in about 7 minutes. I got the results in about 5 days. For me it was worth doing.

10:37 AM  
Anonymous the weirdgirl said...

Oh my dear, I'm so sorry. It IS hard and I know. I failed almost every initial screening in my first pregnancy, both for myself and the baby. Came back with a 1 in 12 chance of Down's. I did the amnio. I was also sent for a battery of other tests, liver, thyroid, even a leukemia test at one point. I had blood taken every two weeks. And you know what? My son was and is fine. I was fine (eventually). It was rough but we got through it.

My brother is special needs. I grew up with it. The fact that you've wrestled through this and know your ultimate decision is really important. Sometimes it's the not knowing what you would do that is heartbreaking, that eventually tears you apart.

These tests are just screens. If I get pregnant again I will do them all again. I like to know as much as I can.

If you want to ask any specific questions about the tests I took, or even just vent, please feel free to email. Take care! Try not to stress too much.

weirdgirl@mindspring.com

11:38 AM  
Blogger Veronica Mitchell said...

So honestly written. Thank you for sharing this.

I have tried four times now to write an answer to your question what I did, but all my answers sound stupid. I didn't have that particular scary test result, so the tough decisions weren't mine. My second daughter had a two-vessel cord, and that meant weekly non-stress tests and a fetal echocardiogram, but nothing with needles. I still remember the gut-chewing worry, which is hardly alleviated by things like "a small chance of".

11:58 AM  
Blogger Valerie said...

I just started reading your blog and felt I needed to respond!
I was in your situation...it was with my second child. The doctor called me at home one morning and said that my triple screen test came back positive for trisomy 18. He had already made an appointment with the genetic counselor that day, and wanted me to go right away. After hanging up, I cried. I had no idea what was going on and after looking up Trisomy 18 online, I was panicking. We felt the same as you, we were going to have this baby no matter what. My husband couldn't come home, so my sister went with me to the genetic counselor. They talked about how high my percentages were and that they wanted to schedule an amnio right away. I refused. There was no way I was going to risk miscarriage for an answer that didn't matter. So I opted for a level 2 ultrasound, which they did right away. Everything was perfect, it was a boy, and I had a two vessel cord which they said could throw off the triple screen test! He was fine!
Go with your gut...you will know what is right for you. And remember...these tests are not always accurate.

12:07 PM  
Anonymous mary said...

Prayers and peace your way. Needing help to conceive our daughter colored my feelings about having prenatal tests in general. Unless the answers were going to change the course of care before or immediately after birth, I simply turned them all down. Though DH was nervous about it, he agreed that we were having the baby nomatterwhat. I needed to bask in our perfect-baby-ness and greet our child in that same state. I didn't want to be thinking "she's so perfect except for...". I needed to meet and love her first and that would have been all I needed to get me through anything else.

I say demand the detailed ultrasounds, though they can be wrong too. Our early ultrasounds showed everything was fine, but we had a 36 week ultrasound to “size” the baby that supposedly showed some sort of weird brain/spinal thing. They recommended a 3D ultrasound, but I was tired and working full time and I didn't really want to go do it and doc told me it would have shown up on earlier ultrasounds. The odd results were probably more a statement of the limited real estate in my abdomen than anything else.

12:24 PM  
Blogger Laura said...

Wow, this is a tough one. On one hand I would say take the tests and get well prepared. But then on the other hand, if you already made up your mind about having the baby then why take the tests? If there could be a risk of losing the baby..
Tests can be wrong, as some of my friends have experienced.
If I was in your shoes, and made up my mind about having the baby, I would not take the test that could mean losing the baby, and try to enjoy the pregnancy. Stress is not good on the baby and it is not good for you! Have faith in God.
I wish I could give you the answer as sometimes that seems easier but really, you need to follow your and your husbands heart and instinct which is the best answer..
I am sorry I am not any help, my family and I will pray for you and your baby.

12:31 PM  
Anonymous Anonymous said...

We opted NOT to do an amnio even tho I was AMA ( advanced Mat. age - was 38 /39 )
Honestly, after having waited
16 years for Boorat, be DAMNED if I was going to do anything that had potential to put him at risk.

Keeping you all in my thoughts and prayers.

Lisa

12:34 PM  
Blogger Lawyer Mama said...

I have a nephew with Down's Syndrome. I don't write about him because it's not my story to tell, but he is why I had an amnio.

I got the same "positive" result you did on the prenatal screenings. A 1 in 31 chance of Downs. T and I came to the same conclusion you did. The pregnancy, the baby, was so wanted, that we did not care. Perhaps the decision was a bit easier for us because we knew Sean and we knew how wonderful he was and what a blessing he was and is.

I had the amnio anyway because, as we discovered with Sean, there are some very scary health complications that can accompany Down Syndrome. Sean had to be airlifted to a hospital 200 miles away right after birth. His mother was still in the hospital.

It was terrifying.

We wanted to be prepared, both for the health implications, and in our expectations. Having a child with Down Syndrome changes your hopes and dreams for a child's future. T and I, like you, both do best with information and planning. We also wanted our families to adjust themselves to a different reality and basically get the hell over themselves *before* the baby was born.

Well, that's a lot of explanation for a test (amnio) that ultimately revealed a perfect normal genetic make-up. But it's also how we found out that Hollis was a boy.

If you'd like to talk, please email me Catherine. I know what you're going through and I'm here to listen.

Steph

12:48 PM  
Blogger Michele said...

HBM, I havent checked in for a while and I am so, so sorry you are going through this right now.

I didnt have the tests. I was 37, and high risk, and we did have alot of ultrasounds because they were breech twins. But I declined anything further because I knew that I would obsess and over-analyse way beyond what was healthy. So we "winged it" and we were very lucky.

FWIW, and not having read the comments above I am sure this has been said many times, I know two women who were told they were carrying Down's babies who then went on to have Amnio's, and in both cases the amnio revealed the baby did not, in fact, have Down's. But both also ended up with complications fron the amnio.

3:55 PM  
Blogger kittenpie said...

Me, I am a big believer in knowing what you are dealing with, regardless of what decision you will make about it. For me, it means you can prepare. Find out about supports and get on waiting lists and figure out what special things you might need to get in place around your house.

I would also find that for me, having had the seed of worry planted, I would need to know. Otherwise I would spend the whole pregnancy too worried and fixated to relax and enjoy it. If I didn't know at all, or if I knew for sure, it would be okay, but the in between would kill me. I don't know if you are that way, too, but if you are, it would at least let you either relax or start to come to terms and prepare.

Whatever the case, I hope you have happy endings, whatever that might mean for you and your heart.

4:19 PM  
Blogger the new girl said...

I had those tests because of my *AMA* status. They came back "negative" and so I didn't go for the amnio. I think that if I had been in your situation, and I got a possible "positive" I'd probably go ahead and get the amnio, just to be sure.

For me, there would be no going back to relaxation at this point and I'd probably want to be as prepared as possible. Because I would imagine that no-matter-what I would keep the baby.

Know, though, that I think this qualifies as one of those things that you never really know how you'll act/react until it happens to you.

7:02 PM  
Blogger Kris said...

Oh my God. My thoughts, prayers, and tears are with you. I go for my screening in a week and a half and haven't had the balls to blog about it. My husband is not in for the lovenomatterwhat and I don't know how to deal with that. Just the fact that that's the place you and your husband are will mean no matter what, your decisions will be the ones needed to be made. Thank you for your strength in sharing your experience and know you are in our hearts.

8:14 PM  
Blogger Jennifer said...

My heart goes out to you.

When I was in your situation, I was pregnant with my third daughter (first was a healthy baby, I lost my second through miscarriage due to a trisomy).

Since I already had the trisomy issue before, the news that I had an elevated risk for Downs was terribly upsetting and scary. My doctor scheduled an ultrasound specifically to scan for Downs markers first. I decided to wait for the results of the ultrasound before worrying about the amnio, which I was opposed to having because of the risk of miscarriage. And I knew I would have my baby, no matter what.

I am glad I didn't have to make the amnio decision. I do have a friend who had one with each pregnancy, and she shared with me that neither was difficult.

See if you can't have a detailed ultrasound first. You may have good news as a result and you will be able to breathe a little easier. I continued to be concerned for the duration of my pregnancy, and I think that is a normal reaction. When my daughter was born, the first thing I asked my husband was "Does she look OK?" I asked the same question of the doctor, each nurse, and even my mother who is a labor and delivery nurse. I just wanted to be sure.

My daughter was perfect.

8:52 PM  
Blogger Magpie said...

Because I was 42 when I got pregnant for the first and only time, I had a CVS at 11 weeks. It was like falling off a log - we didn't think to not do it.

It really didn't hurt.

9:19 PM  
Blogger fizzledink said...

Oh, HBM! You'll be in my thoughts & prayers. I don't know what I'd do in your shoes. I had the quad screen done, but would not have had an amnio (it briefly looked like my doctor would be recommending one, the lab processed my bloodwork with the wrong LMP date and came back with a number in the range of concern). I know it's not an easy decision to make. Hang in there.

11:03 PM  
Blogger FENICLE said...

I have no advice, just prayers & good thoughts to send your way and hope that you find peace whatever you decide!

11:38 PM  
Anonymous Anonymous said...

With our first we had ultrasound that lead to a marker for Cystic Fibrosis. We had the amnio (the worst 10 days spendt waiting) and everything was fine. With #'s 2, 3 and 4 we had the ultra sound, but nothing else (I was 39 when #4 was born). Our thinking was... what would we do with the information gained? Would we use that information to change the course of my pregnancy? We would not, so we didn't have any further tests. You need to do what is right for you and your family. I wish you God's peace and confidence.

12:03 PM  
Blogger naomicatgirl said...

I don't have advice. I do have some thoughts.

First, I don't think you make the decision, I think it makes itself. Follow your heart, as it were.

I had my first baby at 35. Did the ultrasound/blood test, all was fine, so I never did have an amnio. 35 is the borderline, anyway.

My second was born when i was 37. Again, no amnio. But this time I thought about it. Again, the ultrasound/blood test was fine (but I was nervous, I will tell you).

The risk of amnio does exist, but it is quite low. And it does absolutely depend on the technician who performs the test, and I believe there are some very good ones in TOronto. I do have a friend who had one, and she did tell me it was not a big deal.

I wish you luck and strength. I agree, knowledge is power. And the best thing, I think, is that you've made your decision before you know what you are dealing with. Which should give you some peace, or strength at least.

12:52 PM  
Blogger Mayberry said...

C., I haven't read all 125 comments ahead of me, so forgive me if this is repetitive; but here's my experience. With my 1st pregnancy, I was 31. I had nuchal translucency and two blood tests, all of which showed no increased risk of chromosomal abnormalities. I also had one blood test which DID show an elevated risk. The doctor advised an amnio. I didn't want to do it, since I felt the other "good" tests outweighed the "bad" one.

But my husband was paralyzed with fear. He very much needed to know what was going on. So we went ahead with the amnio. And yeah, it sucked, but I promise you it didn't actually hurt. It just felt extremely weird. The wait was not difficult because I knew everything was OK -- obviously not the same as your situation.

If I were you? I'd do the amnio. The risk of miscarriage is slight, and the ability to prepare as much as you can for whatever lies ahead is important.

Still: remember that these tests are OFTEN wrong.

Wishing you lots of love & peace.

10:49 PM  
Anonymous Lydia said...

I, too, am a person who has to KNOW. I have the abnormal AFP. My u/s is Wednesday. I will have the amnio.
I need to know, to prepare, to mourn, if necessary and to celebrate (I pray).

I had an amnio with my son and he's just peachy keen! Did it hurt? yes. As bad as labor? Oh heavens no. Was my mind so put at ease that I could relax and enjoy the pregnancy? YES.

There are no guarantees in life. Even an amnio can't promise a healthy baby. But it can give you many (not all) answers. And that worked for me.

11:42 AM  
Anonymous Wright said...

I have no advice, just here to offer my support. I hope the writing proves cathartic.

1:16 PM  
Blogger Staci Schoff said...

Catherine, I am sending you a cyber hug and so much love right now. Because I have no words for you, only tears and hope.

2:20 PM  
Blogger deb said...

Unless you're willing to have an abortion I wouldn't have the amino, it is a test that has risks attached to it.

As for your baby, Down syndrome or not, you will love him or her, no matter what. A special needs child is not the end of the world, it does alter your world, forever, but I get so much from my daughter, I can't imagine my life without her. She opened my heart in a way my other two children never did.

What ever happens, I wish you well. Take care.

2:43 PM  
Blogger cathy said...

Oh, HBM, your post was heart wrenching today! I was where you are 2 years ago when pregnant with my beautiful daughter (who does NOT have Down Syndrome). The tests ARE scary. I don't know what your numbers are, but DO try to remember that it is just a risk assessment. I hate when doctor's say that your test was positive - it only gives the odds that something will happen. Even if your risk of having a Down baby is 1 in 10, that still means you have a 90% chance of having a perfectly chromosomally normal child!

I chose to not have an amnio, and though I'm still happy with my decision I was uneasy the rest of my pregnancy. I couldn't handle the risk of miscarraige or harming the baby that inherently comes with an amnio, even though those risks are very small. It's a hard, personal decision, but if you will be miserable the rest of your pregnancy not knowing, you should consider having an amnio.

Good luck! I know it's hard, but you can handle whatever comes your way!

3:43 PM  
Blogger mo-wo said...

When we faced questions about CPC's (cysts) -- I had the amnio.

It did not hurt... Was, I think, sort of akin to acupuncture sized needle.

It helped me a lot. Helped me go into my birth process without some programmed urge to inspect the baby for 'abnormality'. It helped me plan my maternity leave expectations and it helped me progress/process information about 'the baby' with my little girl soon to be big sister.

I needed the information. Pass/Fail.

We understood many of the things you've said in your posts. Ours sat in draft for so long but they faded away under the delete. You have an amazing readership, don't you think?

4:28 PM  
Anonymous Anonymous said...

We were told with my last pregnancy that we had a 1 in 36 chance of Down Syndrome. Like you, we came to the conclusion that we were having this baby no matter what, so we opted not to do the amnio, and instead find out what we could from the Level 2 ultrasound. They never did find any markers. After months of worry, when our little boy was finally delivered (by a doctor from our practice who had only seen me one other time) my frantic questions about his health were met with a blank stare and a baffled "What are you talking about? Was he supposed to have Down's? This baby is fine!"

Kind of anticlimactic.

9:46 AM  
Blogger Irene said...

First of all, the chance that something is wrong with your baby is really small. So, hard as it is, keep the faith.

Second, I went through a similar thing. But my u/s had MANY findings and I had an amnio then and there because, like you, I HAD to know.

My daughter did have a rare chromosome disorder, but looking back, I wish I didn't know beforehand. If you aren't going to end the pregnancy, it can often make your pregnancy miserable. We were given so much doom and gloom (your baby will NEVER make it to term, she will definitely not live live long after birth, she will definitely need extensive heart surgery IF she survives, she will never EVER make it to one year. Well, they were right about the chromosome disorder, but wrong about a lot. She is 4 1/2. She has never had heart surgery. She is definitely severely disabled, but she is so sweet not even close to the "vegetable" they predicted she would be. I thought I could never ever handle such a child, but I did and I do. It can be hard, my other children can often be just as challenging.

Take care, don't let the "experts" scare you too much (they know so much less than you think!) and keep the faith.

7:44 PM  
Blogger whymommy said...

I have no advice. All I have for you are prayers. But you have those, and you will have those every day until Thursday and thereafter, because this IS hard. Even if you've already made the decision nomatterwhat.

My heart goes out to you, Catherine.

2:55 AM  
Blogger Special Needs Mama said...

Full disclaimer: I have a multiply disabled son who was born very prematurely (23 weeks). I did have an amnio, and I would have terminated if there had been an anomaly.

Now, my world is full of kids with disabilities, including Down syndrome. I agree with everyone who says, if you are not willing to terminate, don't do the amnio.

I also strongly suggest reading up on Down's. There are great blogs on the subject, those that talk about spirituality, but those that also talk about the challenges.

There is no right or wrong here. There is only you and your family.

5:43 PM  
Blogger Emily Clasper said...

You sound just like me about two years ago. When we were faced with the same choice, it was devastating. In the end, we also came to rely on the phrase "no matter what." We were going to love the baby and do our best by him no matter what.

For us, that meant not doing any further testing. We decided that if the baby had Downs, then we'd handle it. It was actually a load off of our minds to come to that conclusion, and I was relieved to be able to just sort of let go and let whatever was going to happen happen.

We definitely grappled (and still do) with the idea that maybe all of these tests aren't so helpful after all... would it have been better to just not know? Of course there is no answer to that one, and if I were pregnant again, I don't know... maybe I'd still have all the same tests.

Whatever the decision you make as far as testing goes, I know it will be the right thing for you. Hang in there... it's so hard!!!!

BTW, my son is fine after all that. That was a relief, but by the time he was born and we knew for sure, we were pretty comfortable with the idea that we might have a disabled child to love. We knew we could handle it... no matter what.

2:40 AM  
Anonymous ozma said...

I can't handle uncertainty. I haven't been in this situation before. But if I was, I would get every test that was not an amnio, CVS or anything invasive.

I hope it will turn out OK. I agree with the person who said don't listen to people. They will project their own fears or desires or wishes or ideas upon you and nothing they say will be useful to you because they are not you. So I would stay away from experts and information until the baby comes and if you need stuff to help the baby, help the baby.

That's my projecting. When uncertain, I seek out information and then I just interpret everything as bad.

10:09 PM  
Blogger Al_Pal said...

Wow. Fascinating and heavy stuff.

I have a friend who works with autistic kids and said one of the boys he worked with was the nicest person he'd ever met.

I'm guessing your baby turned out fine since I've not seen more on this topic! :P

Guess I'll have to take a peek at the archives. :D

7:22 AM  

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