No Matter What

November 29, 2007

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.

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    { 139 comments }

    Hannah November 29, 2007 at 1:10 pm

    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.

    Mama V November 29, 2007 at 1:16 pm

    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

    Anonymous November 29, 2007 at 1:24 pm

    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?

    amy November 29, 2007 at 1:32 pm

    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.

    Awesome Mom November 29, 2007 at 1:34 pm

    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.

    Anonymous November 29, 2007 at 1:38 pm

    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.

    Marilyn November 29, 2007 at 1:38 pm

    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.

    Lady M November 29, 2007 at 1:41 pm

    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!

    Anonymous November 29, 2007 at 1:42 pm

    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.

    AliBlahBlah November 29, 2007 at 1:47 pm

    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.

    BOSSY November 29, 2007 at 1:48 pm

    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.

    Someone Being Me November 29, 2007 at 1:49 pm

    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.

    Mouse November 29, 2007 at 1:50 pm

    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.

    Anonymous November 29, 2007 at 1:50 pm

    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.

    Crystal November 29, 2007 at 1:51 pm

    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.

    Angela November 29, 2007 at 1:57 pm

    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.

    verybadcat November 29, 2007 at 2:01 pm

    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.

    Andy November 29, 2007 at 2:02 pm

    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.

    Suz November 29, 2007 at 2:02 pm

    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.

    mamatulip November 29, 2007 at 2:06 pm

    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

    Anonymous November 29, 2007 at 2:06 pm

    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.

    kgirl November 29, 2007 at 2:08 pm

    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.

    Anonymous November 29, 2007 at 2:11 pm

    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!

    DaniGirl November 29, 2007 at 2:17 pm

    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.

    Stacie November 29, 2007 at 2:26 pm

    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.

    Cursing Mama November 29, 2007 at 2:29 pm

    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?

    thisKat November 29, 2007 at 2:36 pm

    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.

    LD November 29, 2007 at 2:37 pm

    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.

    Jaelithe November 29, 2007 at 2:37 pm

    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*

    Kelly November 29, 2007 at 2:38 pm

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

    Mimi aka pz5wjj November 29, 2007 at 2:43 pm

    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!

    justmylife November 29, 2007 at 2:44 pm

    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.

    Kyla November 29, 2007 at 2:45 pm

    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. ;)

    Bon November 29, 2007 at 2:45 pm

    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.

    Lori at Spinning Yellow November 29, 2007 at 2:51 pm

    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…

    Don Mills Diva November 29, 2007 at 3:01 pm

    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.

    Christine Klocek-Lim November 29, 2007 at 3:03 pm

    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.

    Kate November 29, 2007 at 3:13 pm

    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.

    Mrs. Chicky November 29, 2007 at 3:20 pm

    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.

    b*babbler November 29, 2007 at 3:21 pm

    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.

    bubandpie November 29, 2007 at 3:23 pm

    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.)

    Laura November 29, 2007 at 3:25 pm

    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.

    Laura November 29, 2007 at 3:26 pm

    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.

    crazymumma November 29, 2007 at 3:35 pm

    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.

    Delilah November 29, 2007 at 3:36 pm

    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.

    Niksmom November 29, 2007 at 3:42 pm

    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.

    Piece of Work November 29, 2007 at 3:44 pm

    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.

    MamaMichelsBabies November 29, 2007 at 3:46 pm

    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*

    Julie Pippert November 29, 2007 at 3:50 pm

    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

    pnutsmama November 29, 2007 at 3:52 pm

    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.

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