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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    Mary Joan Koch November 29, 2007 at 3:53 pm

    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.

    Janet November 29, 2007 at 4:02 pm

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


    Momish November 29, 2007 at 4:02 pm

    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.

    ALI November 29, 2007 at 4:11 pm

    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!

    Farrah November 29, 2007 at 4:11 pm

    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.

    Chris November 29, 2007 at 4:37 pm

    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.)

    The City Gal November 29, 2007 at 4:39 pm

    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.

    Anonymous November 29, 2007 at 4:43 pm

    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.

    Anonymous November 29, 2007 at 4:45 pm

    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.

    karla November 29, 2007 at 4:54 pm

    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.

    Karen November 29, 2007 at 4:57 pm

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

    anna November 29, 2007 at 4:59 pm

    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.

    Corey November 29, 2007 at 5:00 pm

    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.

    margalit November 29, 2007 at 5:04 pm

    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!

    Jenifer November 29, 2007 at 5:12 pm

    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.

    mothergoosemouse November 29, 2007 at 5:24 pm

    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.

    Jozet at Halushki November 29, 2007 at 5:29 pm

    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.

    Piece of Work November 29, 2007 at 5:32 pm

    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)

    Piece of Work November 29, 2007 at 5:35 pm

    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%.

    LSM November 29, 2007 at 5:41 pm

    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!

    Lisa November 29, 2007 at 5:43 pm

    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.

    FishyGirl November 29, 2007 at 5:45 pm

    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.

    Dawn November 29, 2007 at 6:01 pm

    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.

    B November 29, 2007 at 6:03 pm

    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.

    toyfoto November 29, 2007 at 6:08 pm

    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.

    Tory November 29, 2007 at 6:20 pm

    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!

    glycerin November 29, 2007 at 6:31 pm

    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.

    Hang in there. Huge hug!

    Aimee November 29, 2007 at 6:41 pm

    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 .

    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.

    Beck November 29, 2007 at 7:01 pm

    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.

    Heather November 29, 2007 at 7:09 pm

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

    Not Afraid to Use It November 29, 2007 at 7:10 pm

    I just wanted to send a hug your way.

    Sharon November 29, 2007 at 7:19 pm

    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.

    Susan Getgood November 29, 2007 at 7:20 pm

    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.

    Diane November 29, 2007 at 7:57 pm

    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.

    Glennia November 29, 2007 at 8:21 pm

    “…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.

    Maggie November 29, 2007 at 8:24 pm

    I am about to blog something to you because it is too long for a comment. Check out in ,say, about 30 minutes.


    Mary November 29, 2007 at 8:45 pm

    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,

    Mommato2 November 29, 2007 at 9:02 pm

    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.

    chichimama November 29, 2007 at 9:49 pm

    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.

    Candygirlflies November 29, 2007 at 9:58 pm

    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

    Heather November 29, 2007 at 10:16 pm

    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.

    something blue November 29, 2007 at 10:22 pm

    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.

    Major Bedhead November 29, 2007 at 11:06 pm

    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.

    Anonymous November 29, 2007 at 11:21 pm

    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.


    Anonymous November 29, 2007 at 11:35 pm

    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.

    Stimey November 29, 2007 at 11:47 pm

    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.

    Christina November 30, 2007 at 12:13 am

    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.

    JaniceNW November 30, 2007 at 1:07 am

    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.

    momofthree November 30, 2007 at 3:32 am

    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.

    GIRL'S GONE CHILD November 30, 2007 at 4:46 am

    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.

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