Sunday, 8 December 2013

Not the worst news

Just when you think you're safely out of the danger zone (if such a thing exists). Just when we finally began allowing ourselves to feel really hopeful and let unadulterated happiness in. Just when we were starting to breath again.

We got the bloodwork results from our combined NT screening (after the nuchal fold itself measuring perfectly) and they show an extremely high risk of Down's syndrome; 1:35. Given my age, I suppose we knew there was a heightened risk, but it still broke me to see H, overcome with tears of fear and exhaustion, look at me and say 'I knew we shouldn't have let ourselves hope'.  

They asked us to come in right away to discuss things with the screening midwife. When we were ushered into one of those 'nice' hospital rooms with the sofas and tea making facilities and boxes of tissues, I think both H and I were petrified; those are the kinds of places you go to hear the Very Bad News. The specialist midwife was lovely and patient and answered all of our questions. They are not at this point worried about any other, more dangerous trisomies, which should already have been picked up on u/s. We had an appointment with our Maternal Fetal Medicine specialist booked for Friday anyway, so after this encounter it was good to have the extra time for discussion and to go over any questions we still had. Not that we managed to really be coherent enough to compose any, or focussed enough to really take in the answers that were proffered. We did, however, get a completely unsolicited look at the little seedling again; we weren't expecting this, having just had a scan a week earlier, but Dr B offered and who were we to decline? (Have I mentioned that I'm a little bit in love with our doctor?) And there s/he was, bouncing around without a care in the world, looking pumped up on too much caffeine or sugary cereal for all the vigorous jumping around it was doing. This time we got to hear the heartbeat too. Amazing. This is one strong baby; I just feel that.

It's been a very tumultuous few days. I've gone from devastated and terrified that any heightened risk factors might put this pregnancy in jeopardy, to a sense of 'ok, we can do this', to utter confusion over what I can, should, might be feeling.

Part of that has to do with all the what next? issues we now have to consider. We were offered further screening; we're too late in the pregnancy for a CVS but our options now include an amniocentesis and level two genetic anomaly scan. (And before anyone suggests it, no, the MaterniT21 test is not available here in the UK, even privately. From a bioethical perspective - to do more with the history of scandal surrounding the company that holds the patent rather than the test per se - I am not sure how we'd feel about it anyway.)

Given our history of loss and how hard we've struggled to get here, not to mention how protective we feel of the little seedling, it would feel crazy to undergo any testing that puts us at risk of miscarriage, no matter how small. So I don't think we'll pursue an amnio. We can be booked in for a high level genetic scan carried out by a specialist (rather than just a technician) at 19 weeks. This might detect any 'soft markers' for Down's, but like the combined screening of NT scan and bloodwork, it can give you only a probability; it's not a diagnostic test.

Even if we got a conclusive answer from an amnio, we wouldn't consider a termination because of a diagnosis of Down's syndrome. It couldn't possibly make us love our baby any less, and really, as two highly educated people without any other children to demand our time and attention, we are pretty well placed to cope with such an eventuality and give our little seedling the best possible upbringing regardless of its level of ability. We've fought too hard to get here. So the invasive, risky procedures seem pointless, except insofar as perhaps preparing us for that eventuality.

Of course, there's a big part of me that wants to crumple up on the floor and howl, to indulge in all kinds of I knew it thinking about how we were never going to be allowed the true, simple joys of pregnancy without fear and complication. If this was always going to be true anyway, given our history, it's now that much moreso. No stress-free, happy pregnancy here. But actually, I don't want to come across all Why me?, because really, why not me? I know I'm no one special. Although it can be galling to watch how some people (usually the nasty ones, or so it seems) can breeze through life unscathed and blissfully unaware of the harsher difficulties that some of us face in more than our fair share, the truth is, people get shitty breaks all the time. This is far from the worst among them.

For months, years, I lamented and implored the fertility gods to just allow us one chance at a healthy, happy, living baby, and nothing has fundamentally changed in that. Our little seedling is still that chance. We're still lucky beyond measure, and best of all, we know it.

I'm still processing all this, and don't yet know what I think or feel, but one thing is true: this is not the worst news. Even if it may not look as I expected it to look when I have often repeated that simple, comforting incantation, somehow I still have to believe that everything is going to be alright. Screw it; I'm going to keep hoping.

50 comments:

  1. I know that this must be scary, if just for all the as-yet unknowns. So much of what you write echos how hubby and I feel. We did the screening simply to help us prepare for any eventuality. Whatever happens, I'm sending love your way and hopes for a healthy remainder of pregnancy. You are strong, and will be a fantastic mother for this baby, no matter what.

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    1. A healthy remainder of pregnancy (so far, so good) would be a big reassurance, for sure. And thank you for saying 'no matter what', because that's how I look at it. The motherlove is there, no matter what, and I think I will be a great mom to this beautiful, perfect baby, but it sure is nice to be reminded :)

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  2. I'm sorry, I know this has to be scary. You're strong. There's still a chance everything will be fine. Even if it isn't, you have a great outlook on things. I'm sure it's a lot to process though. Thinking of you.

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    1. Thank you friend; I know you are no stranger to complicated pregnancy after loss...awful, isn't it? It's the stress more than anything. Because whatever the outcome, I have so much faith in this baby. I know we'll get through this, and as long as s/he comes out pink and screaming in 5.5 months time, everything will be ok.

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  3. The uncertainty has to be scary, but you're right--it's not the worst news. I work with families of children with developmental delays, including Down Syndrome. There's definitely a grieving process involved if/when you find out your child is not the "perfect" child you had imagined, but those families love their children just as much. Until you do know for sure, there's no reason to be anything but hopeful. And, as you said, you'll be alright either way.

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    1. I AM hopeful either way, and I love hearing stories like those of your clients. After you've held your dead baby in your hands, there is no way you can see a living, healthy baby as anything but perfect and lovable. And you're right, my reaction was/is more to the uncertainty and the stress than to that possible outcome. I appreciate your professional insight and your encouragement.

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  4. I am very sorry that you have this scare right now. For the longest time, I used to pray that I get a baby - ANY baby, even one with disabilities, just so long as I could have one. But now that I'm actually pregnant I'm changing my tune a bit. I want my baby to be perfect and healthy... not for me, but for my child's sake. I'm sure you feel the same way.

    So here's the thing.... even a 1 in 35 chance doesn't mean a definite, right? I don't know if you've seen me mention my mom before, but she gave birth to my sister at 41 and to my brother at 44. OF COURSE her doctor's begged her to get the testing, but she felt the same way you did...after so many losses and so much trying, she wasn't willing to give up the pregnancy no matter what. She willingly accepted that she may get a baby with Down Syndrome, and that is was more likely, but she managed to dodge that bullet twice. And she was pretty old! My grandmother was 45 when she had her last baby, and same thing... he was perfect. I totally understand your fears, but still, you didn't get an absolute 100% positive that it's going to happen.

    And if it does... you'll handle it. You'll love that baby so much and that baby will love you right back. If you want to read a beautiful book about a mom coping with her daughter unexpectedly having Down Syndrome, check out Bloom http://www.amazon.com/Bloom-Finding-Beauty-Unexpected-A-Memoir/dp/0062045040/ref=pd_sim_b_17. I dare you not to cry while reading it, no matter what the outcome of this pregnancy. It's a beautiful story.

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    1. Actually, I have to say that I feel the opposite. Or perhaps I should say, having struggled so hard to get here, having held my son in my arms (who was 'perfect' and healthy, just dead), having fallen in love already with his sibling in all our moments of staring at that u/s screen while s/he jumped and kicked in there, I want a perfect and healthy baby, but I also believe that a diagnosis of Down's syndrome negates neither of those. My baby is already perfect to me, simply because it's here, because it lives and thrives. If I worry about my child at all, it is that, should it be different in any way, it will face a society which still defines so much of what is 'perfect' according to what is 'normal'. Perhaps my experience is shaped also by living with 'disability' in my own youth; never have I felt *dis*abled in anything I've pursued, and my quality of life has not suffered. I know that these words are used to offer reassurance and comfort, but I also think we need to be aware of *how* we use them. I say this in the hope of educating, and because I think we can support each other better the more awareness we have.

      Of course you're right, statistically speaking, the odds are still that we have none of this to worry about (though the uncertainty is killer!), and like you I know many women who should have been high risk because of age, but went on to have babies missing that extra chromosome.

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    2. Can I blame pregnancy brain on how potentially insensitive my comment sounded when going back and re-reading it? Please allow me to clarify.

      What I meant by "perfect" was not sick... as in not suffering, not in pain, not afflicted with some terrible disease. Because there was a time when I selfishly begged to be given a child with any kind of ailment, not once thinking how hard it would be for that child to suffer through this life in pain or misery. That's what I meant.

      And not to imply that a child with Down Syndrome is somehow imperfect or lacking, because nothing could be further from the truth. From my experience, I believe people with Down Syndrome are more capable of pure love and unadulterated wonder than most people can comprehend.

      My nephew is autistic. Believe when I say, he's perfect, because he is who is and that's exactly who he needs to be. I didn't mean to offend in any way or to throw around that word.

      And I'm hoping nothing but the best outcome for you and that little baby.

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    3. No worries Amanda. If there is anything I have learned in the course of the last three and a half years its that 1) sometimes we need to be really clear about what's welcome and not, hurtful and not, in order to get the support we need and 2) sometimes, when situations are emotional, there is no 'right' thing to say, and just knowing that people care is enough. I totally know you were offering support and comfort.

      For me, I'm very uncomfortable with the use of words like 'perfect' or 'normal' to imply that there should be a standard for those things, because really, there's such a range. And every baby, no matter what it's situation or abilities, is perfect to its parents, right?

      At the end of the day, I think we are all the same and you and I are saying the same thing: we just want to fiercely protect and cherish our little ones, whether that's from the outside world or more basic existential hardship. I think it's instinctive and unavoidable, and that's beautiful and amazing. Thanks for your comments.

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  5. I am so sorry that you got news that gave you more stress, more agonizing over the "what-ifs" of possibly having a child with a disability. Having said that, I rather want to reach through the inter-webs and give you a big hug after reading this. There is so much courage and compassion in what you write.

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    1. Thank you for this comment; it made me cry happy tears. The 'what ifs' are definitely the main stressor right now, but I am still feeling this baby kick and squirm every day, and that continues to be a wonderful feeling. And the hug is very appreciated and much needed! Thank you friend.

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  6. Sending you so much love as you continue processing this news, but still hoping that this is just a scare along to the way to your beautiful rainbow.

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    1. Thank you Brianna. I am feeling more hopeful every day that this beautiful rainbow will really stay with us, no matter how many chromosomes s/he brings!

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  7. I'm sure this must be scary. I'm praying for you guys to handle what ever news is thrown your way. praying for you.

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    1. Thanks for your thoughts and prayers, they are so appreciated. Just knowing that there are wonderful strangers out there hoping for us makes it a little less scary. And we're feeling hopeful too.

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  8. Oh Sadie. :( this is hard news. I'm so sorry that your facing this. Even if it's not life-threatening, it has the very real potential to be life-changing.

    I completely understand where you're coming from regarding amniocentesis. After loss, any risk of miscarriage was something I desperately wanted to avoid. That said, I would still do the research regarding this test so you can make an educated decision. In addition, it may be worth your while to find a support group for parents who have children with Down's. Though I most certainly hope for the best, preparing for this outcome will help you take control of the situation as well as provide you with some much needed support.

    Thinking of you

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    1. Thanks Cristy for your thoughts and suggestions. We're certainly thinking about all the possibilities before us, and the best ways to prepare for each....while also remembering to have moments for pure joy as we progress through the second trimester!

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  9. I think blogger might have eaten my comment. I'm so sorry you're going through this and I'm sorry it's stolen the little bit of joy and excitement you had finally allowed yourself to feel. Your baby is going to be so lucky to have you and H as parents. And remember that these screening tests have a high rate of false positive, especially as women get older. 1 in 35 still means that out of 35 birth, 34 babies will be chromosomally normal, so there is a very good likelihood that all will be well. And if it's not, you and H are going to love your seedling and give him/her the best life with the greatest of opportunities. I hope the 19 week scan brings you some comfort.

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    1. Thanks Megs. Your comments about the love and opportunity that we'll share with our baby make me smile :) You're right about the false positive, and even with the current odds, we're looking at only a 2.8% possibility...We are still processing, and there was a momentary panic, but we won't let this steal the joy and excitement which is resurfacing even now. Thanks for your kind words of encouragement and support.

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  10. Sadie, my love, this isn't the news any of us -- least of all you and H -- wanted to hear, but I am so impressed by the way you are processing this news. I know it must be so hard to hear. And I'm so sorry that you didn't get the peace of mind you deserve. I'm hoping that, despite the odds, they play out in your favour. Whatever happens, we all love you and your little seedling too!

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    1. Aw, Lauren, you're too sweet and your words really bring me a lot of comfort. Peace of mind and a calm, uneventful pregnancy would have been nice, for sure...But I'm sure I would have found something to obsess about either way(!), and I'll still take this if it means this little seedling continues to squirm around in there. What could be better?

      I'm sending you huge hugs as you also process your medical uncertainties. Lots of love to you lady.

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  11. Oh Sadie! I'm very sorry for this difficult news - there is so much uncertainty and not knowing and having to make a whole new bunch of tough decisions is so hard.

    I declined the combined screening with my last pregnancy as I knew my results would be higher than average, due to my age and didn't want to be in the situation you are in now, but the NT reading was so high (6.5) the ultrasound tech said they had a 'duty of care' to tell me anyway. Grrr. We spent the next couple of weeks in a storm of research and emotions. Like you, we decided not to pursue further testing and assume the risk of losing our hard won pregnancy. We were referred to the genetic counsellor in the Fetal Care Unit who emphasised that there is nothing we could have done, or could do to change the situation. I found it very helpful to speak with her. This time around we elected to skip the 12 week screening altogether taking the view that what will be, will be.

    Sending much love to you and your little seedling and hope that everything is indeed going to be alright. xx

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    1. I am sorry that you, too, have had to experience this uncertainty and worry. I can totally see now why you would pass on the screening entirely. I think, having had so may losses, we were just keen on getting as many opportunities to confirm *life* and have that extra monitoring that we didn't even really think much about what the screening represented. I'm not sure if I'd do it again, but such is hindsight.

      I do really believe everything is going to be alright. For you too Lisa! I'm so happy to hear things are progressing well for you guys, and am impressed that you've managed a transnational move in there too! Love to you and your little one.

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  12. Sadie - I'm so sorry for this added stress. But do not give out hope. It's not a diagnosis, it's just odds, so there is still a great chance that nothing is wrong. You can handle it, no matter what. Sending you good thoughts.

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    1. We can, we can handle it. If this whole experience has confirmed one thing, it's how madly in love with this baby we are (where before I had been worrying about my level of protective detachment); we just want it to get here healthy, and I see this possibility as no impediment to that. Thank you for your encouragement, and for hoping with us.

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    2. I'm sending you so much hope, and so many kisses to that little one. Keep us updated. That baby is already so very loved, and that's what the most important thing.

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  13. Keep hoping, yes the the risk of it being Downs is higher than you ever wanted to hear but you could still have a healthy baby in the end. In the meantime, I'm so sorry for the unknown that this has brought. You have fought so hard to get here and to hear this news and possibility must be so scary. Your love and protection for this little seedling shines through with every word. Sending hugs...

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    1. Thank you for saying that Marwil. That love is so fierce, and so protective already. Whatever the future holds, that's a gift. And thank you for the hugs and encouragement. Sending love and hugs to you and your sweet baby too.

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  14. Good, keep hoping. You both have come so far, as has your little seedling. But I'm still so sorry you've had to face this sort of news, and feel those sort of hard emotions.

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    1. The emotions are hard, not least because I don't quite know yet what to do with the reactions of others. But you're right Catherine, we've come this far and all three of us will keep going, come what may :) Thanks for hoping with us.

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  15. Hugs Sadie. Not the worst news, no, but news that requires a support system to surround you. Hoping you and H find some answers and comfort in the coming weeks. Thinking of you.

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    1. And you guys are certainly a welcome, warm surround of support in these early and confusing days :) Thanks Northern Star.

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  16. I'm sorry for the stress of this less-than-ideal news. I don't think I'd ever do an amnio or other test that came with a (even very slight) chance of miscarriage either. After you've fought so hard for the chance at having a baby, it seems like such a risk to take.
    I'm not sure what I would feel if I had been given the same results, but I know I'd be worried, and I know I'd love my baby just as much. I'm sure it's hard to look at it this way right now, but a 1 in 35 chance still means it's very likely your babe will be just fine. I know from all my past Googling that parents are frequently terrified by these types of odds, and all turns out well.
    Hopefully the ultrasound will give you some answers. Sending thoughts of strength & love for you and husband.

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    1. You're right (and as others have said) the false positive rates are quite high, and even if not, a 97.2% chance is still pretty good odds. What matters for me right now is the facts, like you say: I'm worried, yes and I love my baby just as much. Thank you for your comforting words.

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  17. As many of the other commenters said, although a 1:35 chance certainly makes your stress and worry levels skyrocket, the chance that the baby will NOT have downs is still better than the chance that they will. You already know that though. I am just so sorry that you got such worrisome news. That being said, by the sounds of this post, you and hubby are handling this news with such strength and positivity and that makes me so happy. I know that whatever obstacles you and your family face, you will overcome them with strength, grace and wisdom.

    Also, about the baby moving around so much - have you given up caffeine? I can't remember if you told me you had or not, but I haven't. I felt guilty when I went for the NT and the baby was just a dancing away! I wondered if maybe I shouldn't have had my morning cup of tea! haha It's so crazy to see them moving around so much eh? I can't wait to feel movement!

    Thinking of you as always and sending you tons of happy thoughts :) xo

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    1. I have not (gulp) given up caffeine.

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    2. I'm glad I'm not the only one!

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    3. Haha! I gave up caffiene more than TWO YEARS ago because I was so freaked out paranoid that I could kill my baby in those early days before even knowing I was pregnant...I don't even remember what real coffee tastes like. But really, I don't think your baby is suffering. I think it's jumping around for one of two reasons (at least that's what we said when we saw the little seedling last week): it's a happy little dancer and/or it's trying to evade the u/s ;) Wait 'til you feel it - that's quite a trip!

      Thanks for your sweet words my friend; I do feel like we have the ability to face this with strength and positivity, and we're still so happy to be here.

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  18. I'm so sorry for you having to worry about this too. A mother to a down syndrome baby once wrote (in a blog I used to follow), that having him was like taking a trip and ending up on a different airport, in a different country, than what they had planned or imagined. But that it still was a wonderful adventurous trip they wouldn't change for anything. I really love this metaphor. I know you will love your baby no matter what, but hope, of course, with you, that she/he will be healthy.

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    1. Yes, that is a beautiful text and it actually helped me a lot when we were just beginning to deal with the news that infertility was very likely going to be a part of our road. You can read it here

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    2. I have read and loved that analogy many times in the world of infertility,but didn't know it was first about the blessings of having a special needs child. Thanks for sharing again :)

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  19. You must be so worried. I cannot believe this is even a possibility. I had to reread your post three times. DS children are a gift like any other child, but the possibility robs you of any sense of normalcy in this pregnancy, which you so deserve. I am sending you so much love. I have been thinking about you all day.

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    1. Actually, after the initial fear of something more serious, the worry is abating (though ask me again tomorrow)...we're adjusting, and seeing our little one up there jumping all around sure has helped in that department. Like I said, I feel this kid is a strong one. And really, after our experiences with S, I think the illusion of normalcy was gone a loooong time ago. I'm ok with it, there are other gifts. We're so grateful.

      Thanks for your thoughts and words of support my friend. Sending hugs to you.

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  20. I'm so sorry you received these odds. I know how scary it can be. We received 1:225 odds with the twins after the sequential screen (NT scan, first tri bloodwork and quad screen all combined). Our doctors focused on the fact that our risk was still less than my age-related risk, which was 1:120, but that was of little comfort to us. We also decided to wait it out, given our poor fertility history, and did not pursue an amnio. Instead, we did the Level III ultrasound and fetal echocardiograms, which came back normal and reduced our risk to 1:450. However, I worried about it until the moment they were born. They were both born with the correct number of chromosomes; however, we discovered one of the twins' placentas appeared to have matured at a faster rate than the other and she was born 1.5 pounds lighter than her sister. All of my research when I first got the screening results mentioned future placental issues could be one reason for a false positive. I mention that as another possibility for your risk results. Also, I found a great deal of comfort by reading the "Poor Prenatal Diagnosis" page on Baby Center. I read through dozens of pages, and the vast majority of posts were from women who ended up with false positives. There were also many uplifting stories from women who were "The One." Sending you many good vibes that you are in the false positive camp.

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    1. Thank you for all your very helpful insights, even though I'm sorry you also had to go through this difficult experience in order to get them. All this info is really helpful, and I'll have a look at more. I hadn't heard of the placental issues, but it might be something to keep an eye on for later stages. I did find some interesting research showing how women who underwent fertility treatments were at increased risk of false positives because the progesterone supplements they are given increase the levels of β-HCG; although I didn't have fertility treatments, my progesterone levels have always been through the roof, so I do wonder if there is some correlation there too.

      Mostly though, thank you for your words of encouragement, and just being here.

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  21. Oh Sadie. I'm sorry this wasn't the number you all (and we, your friends are strongest supporters) wanted to hear. Yes, you have every right to be concerned. I certainly would be terrified. There would be tears. But I know that my mom and dad and husband and friends would all say, yes, there is a 1 in 35 chance that this child will have Down Syndrome. But there is a 34 in 35 chance that s/he won't. A greater than 97% chance that s/he wont. I know. It's not good enough. But, for the sake of your sanity, try to add it to your mantra, sister. And in the meantime, I'll be sending the vibes and such. xo

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    1. Thanks for the vibes lentil! After the initial fear and shock has worn off, we're feeling pretty ok about the odds. Sure, it would be nice to have had a totally stress-free pregnancy, but really who are we kidding? We're hanging in there and feeling positive.

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  22. Oh Sadie, I'm sorry this unexpected news has been causing you so much stress and worry. I can only imagine how upsetting it would be to sit in that room where they dole out the Very Bad News. But do you mind if I play the eternal optimist for a second? There's still a 34 out of 35 chance here that everything is perfect! And the nuchal fold measuring perfectly is a HUGE encouragement. If something were wrong, I don't think you would have seen that perfect NT scan. I think of you often and say prayers for your sweet baby. I truly believe that everything is going to be all right. Hugs.

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    1. Not at all Annie! In fact, I'm applying the 'eternal optimist' strategy to this situation no matter what; as in, I'm optimistic for our future no matter how this baby comes to us. Nuchal measurements or not, s/he's already perfect in our eyes, and the love is just amazing. We truly feel so blessed.

      Thanks for your words of support my friend, and I'm sending so much hope and encouragement back your way. You've had an amazing week and it's only Tuesday! :)

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