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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    Jenifer November 30, 2007 at 9:23 am

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

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

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

    Thoughts and prayers are with you no matter what.

    barbara November 30, 2007 at 9:39 am

    I know this may sound odd, but I want to say congratulations. You see, I had a son born with Down syndrome 15 years ago and it changed my life and my family so much – and in such a positive way – that I can’t imagine life without him. You can read a little about how I feel at

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

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

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

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

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

    barbara November 30, 2007 at 9:49 am

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

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

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

    Laural Dawn November 30, 2007 at 10:01 am

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

    Baby in the City November 30, 2007 at 10:56 am

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

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

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

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

    Jozet at Halushki November 30, 2007 at 11:05 am

    Laural Dawn

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

    The City Gal November 30, 2007 at 11:14 am


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

    I don’t know what to say, except for “I am sorry, I didn’t know”.

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

    Tina C. November 30, 2007 at 11:37 am

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

    the weirdgirl November 30, 2007 at 12:38 pm

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

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

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

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

    Veronica Mitchell November 30, 2007 at 12:58 pm

    So honestly written. Thank you for sharing this.

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

    Valerie November 30, 2007 at 1:07 pm

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

    mary November 30, 2007 at 1:24 pm

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

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

    Laura November 30, 2007 at 1:31 pm

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

    Anonymous November 30, 2007 at 1:34 pm

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

    Keeping you all in my thoughts and prayers.


    Lawyer Mama November 30, 2007 at 1:48 pm

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

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

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

    It was terrifying.

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

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

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


    Michele November 30, 2007 at 4:55 pm

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

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

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

    kittenpie November 30, 2007 at 5:19 pm

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

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

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

    the new girl November 30, 2007 at 8:02 pm

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

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

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

    Kris November 30, 2007 at 9:14 pm

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

    Jennifer November 30, 2007 at 9:52 pm

    My heart goes out to you.

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

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

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

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

    My daughter was perfect.

    Magpie November 30, 2007 at 10:19 pm

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

    It really didn’t hurt.

    fizzledink December 1, 2007 at 12:03 am

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

    FENICLE December 1, 2007 at 12:38 am

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

    Anonymous December 1, 2007 at 1:03 pm

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

    naomicatgirl December 1, 2007 at 1:52 pm

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

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

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

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

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

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

    Mayberry December 1, 2007 at 11:49 pm

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

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

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

    Still: remember that these tests are OFTEN wrong.

    Wishing you lots of love & peace.

    Lydia December 2, 2007 at 12:42 pm

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

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

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

    Wright December 2, 2007 at 2:16 pm

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

    Staci Schoff December 2, 2007 at 3:20 pm

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

    deb December 2, 2007 at 3:43 pm

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

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

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

    cathy December 2, 2007 at 4:43 pm

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

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

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

    mo-wo December 2, 2007 at 5:28 pm

    When we faced questions about CPC’s (cysts) — I had the amnio.

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

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

    I needed the information. Pass/Fail.

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

    Anonymous December 3, 2007 at 10:46 am

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

    Kind of anticlimactic.

    Irene December 3, 2007 at 8:44 pm

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

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

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

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

    whymommy December 4, 2007 at 3:55 am

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

    My heart goes out to you, Catherine.

    Special Needs Mama December 4, 2007 at 6:43 pm

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

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

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

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

    Emily Clasper December 5, 2007 at 3:40 am

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

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

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

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

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

    ozma December 5, 2007 at 11:09 pm

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

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

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

    Al_Pal April 1, 2009 at 7:22 am

    Wow. Fascinating and heavy stuff.

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

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

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

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