November 2011 Moms

My NT scan sucked...

We had our NT scan this morning and unfortunately the results were abnormal. The nuchal fold measured 3.5mm which makes our baby high risk for Down Syndrome. The sonographer was very nice and patient with all of my questions. She told us it was abnormal and gave us information about amnio and CVS. I told her I was immediately heading to my 12 week appointment and she said she would have the doctor who would "officially" read the scan call my midwife right away.When we got toe my appointment my midwife came in and told us the doctor calculated our odds of having a baby with Down Syndrome is 1/6. I broke down at that point. My midwife just kept hugging me and patting my arm telling me how sorry she was. She was really nice. DH was in shock the whole time but comforted me when I was sobbing.My midwife encouraged me to get a CVS asap, so they got me in Thursday morning. We go in at 8:30 to meet with the doctor who will do some genetic counseling before she preforms the transcervical  CVS. We will get the results in a week.Of course I consulted Dr. Google and he says that if the baby has a nasal bone present, which ours does, then it is less likely to have Downs. This is me trying to stay positive. I am so nervous and scared. So is DH. We told our parents and they cried with us. I feel bad being upset when I am not sure that anything is wrong yet. I also feel guilty because there are worse things that can happen. I am so worried and upset though. DH has been wonderful, I know he is scared too. He has been very supportive and we plan on spending Thursday together resting after the CVS. We are really hoping that our baby is in the 83% that do not have Down Syndrome. 83% sounds so much more positive than 1 in 6. Any thoughts and/or prayers you could send our way for good results would be SO greatly appreciated.  Here is a picture of our beautiful baby: (the white streak near the chest is a glare, sorry)image 
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Re: My NT scan sucked...

  • I am so sorry I can't imagine what you are going through right now! All I can say is stay positive and try not to stress too much, it won't be good for you and your baby. Focus on deep breathing and relaxing and picture your baby growing big and strong. It sounds like you have a really supportive midwife and DH which is nice.83% does sound good....T&P to you over the next week!
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  • Yeah, I like 83% much better.  May I ask how old you are?

    The other question I have is whether the bloodwork has come back yet.  The statistic isn't supposed to be based solely on the scan. 

    No matter what, my heart goes out to you.  Sometimes information isn't helpful.  It might be a blessing to know in advance, but it's a curse if this is a "false positive".

    Hang in there.  I am sending you and your DH and baby all the positive thoughts and prayers that I can.

    ((((HUGS))))

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  • Prayers, fingers and toes crossed, any and all positive thoughts are headed your way....Good luck.  I go for my scan on Monday and I am a nervous wreck?!  Keep us posted!
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  • jb2rnjb2rn member

    I am so sorry to hear that. I hope your CVS brings you better news.

    ((hugs)).

    b/w=FSH 15.6, AMH 0.4 surprise natural BFP on 3/12/11
    DS born via unplanned C-section at 40w6d

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  • Lots of prayers being send your way {hugs}

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  • Thinking of you and wishing you luck! 
  • I'm so sorry :( You are in the 83% range though !! The odds are with you :)  I'm thinking of you and your family....Stay strong and try to keep positive!
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  • I am sorry for the shocking news. You have support here, regardless of the outcome and your decisions based on the outcome. 1/6, the odds are still in your favor. 

    My BIL has Downs, and he's lived a very happy and healthy life--he's 30 and hasn't had any of the big health issues that are likely for Downs people, yet. He's an amazing, caring person. 

    (note, this info wasn't intended to be a pro-life, shove-down-your-throat propaganda, but to let you know that the quality of life for a child with downs is much better than it was a generation ago. A special needs kid needs special parents, and the best parents are the ones who make the hard decisions, even if that means not being a parent).  

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  • prayers and hugs your way!! Try not to focus on that until you get all the facts in front of you! Try and relax and stay positive.
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  • imageldswims:

    Yeah, I like 83% much better.  May I ask how old you are?

    The other question I have is whether the bloodwork has come back yet.  The statistic isn't supposed to be based solely on the scan. 

    No matter what, my heart goes out to you.  Sometimes information isn't helpful.  It might be a blessing to know in advance, but it's a curse if this is a "false positive".

    Hang in there.  I am sending you and your DH and baby all the positive thoughts and prayers that I can.

    ((((HUGS))))

    I am "only" 24, and the place that did the scan says if you have an abnormal scan they don't need to do the bloodwork because they have enough evidence with the abnormal measurement. I hadn't heard of anyone else doing just the scan though.

    Thank you for your positive thoughts. It means a lot. 

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  • imagerachaelski:

    I am sorry for the shocking news. You have support here, regardless of the outcome and your decisions based on the outcome. 1/6, the odds are still in your favor. 

    My BIL has Downs, and he's lived a very happy and healthy life--he's 30 and hasn't had any of the big health issues that are likely for Downs people, yet. He's an amazing, caring person. 

    (note, this info wasn't intended to be a pro-life, shove-down-your-throat propaganda, but to let you know that the quality of life for a child with downs is much better than it was a generation ago. A special needs kid needs special parents, and the best parents are the ones who make the hard decisions, even if that means not being a parent).  

    Your post made me cry, it was so kind. I didn't take it the wrong way at all. Thank you for telling me that, it made me feel better. 

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  • I am so sorry that you didn't get favorable news, but I pray that your baby will be ok and the next round of tests bring you positive results. T&Ps coming your way.

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  • Thoughts and prayers for you, DH and your family. I can't imagine what you are going through but 83% sounds like a pretty good percentage for you. Keep us posted and good luck.
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  • So sorry that you are going through this. Good luck with your CVS and please keep us updated. T&P's headed your way.
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  • I'm so sorry.  I hope the CVS gives you good results.  Remember, the odds are still in your favor, so there is still reason to have hope.  I'll be thinking of you.
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  • i'm so sorry you're going through this. i can't imagine. T&P for you and your family! i know the nuchal fold measured abnormal.. when you get your blood work results back could that possibly change the odds for the better. i hope the CVS goes well tomorrow. please keep us updated. my heart goes out to you!
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  • I am so sorry, you must be feeling so scared, confused, and unsure. Hopefully the CVS will bring you lots of relief, 83% sounds really positive, and the presence of a nasal bone is a good thing. I will be thinking of you and your little family, please keep us updated. Lots of hugs being sent your way!
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  • Thank you all. I know the odds are good I am just so worried if we are in the small percentage that aren't good like we were for the scan. If it makes a difference or not I am still relieved the baby has that nasal bone. That's the hope I'm holding on to.
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  • Very sorry to hear that. T&P coming your way. Sounds like you have a great support system by your side.
  • I am so very sorry that you got some less than desirable results. =(  All we ever want is a perfectly healthy baby and news like this can be quite devastating. 

    It sounds like you have a wonderful support system, and it's great that you and your DH are there for each other during this trying time.  I will certainly keep you and your family in my thoughts and prayers.  Please update us next week when you can.

    Your ultrasound picture looks absolutely adorable, and I think it's great news that they were able to see a nasal bone there.  Hang in there.

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  • I am so sorry, I know this is incredibly difficult to deal with right now.  I am sending T&Ps your way for all of you. 
  • I am so sorry!  That must be so difficult to try to deal with! 

    My DH was just reading online about NT scans because we have an appointment tomorrow and want to talk to the doctor about it and he found a statistic that said that NT scans have a fairly high false positive rate.   Just something to keep in mind until you get more information.

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  • imageSweetNSavory:
    imageldswims:

    Yeah, I like 83% much better.  May I ask how old you are?

    The other question I have is whether the bloodwork has come back yet.  The statistic isn't supposed to be based solely on the scan. 

    No matter what, my heart goes out to you.  Sometimes information isn't helpful.  It might be a blessing to know in advance, but it's a curse if this is a "false positive".

    Hang in there.  I am sending you and your DH and baby all the positive thoughts and prayers that I can.

    ((((HUGS))))

    I am "only" 24, and the place that did the scan says if you have an abnormal scan they don't need to do the bloodwork because they have enough evidence with the abnormal measurement. I hadn't heard of anyone else doing just the scan though.

    Thank you for your positive thoughts. It means a lot. 

    If I remember right someone last week had an abnormal scan but the bloodwork showed everything was just fine.  I will hope that's the case for you.  My ob won't even schedule a CVS without seeing the bloodwork results first.  I almost feel like there might be some twisting here so as to get paid for more expensive tests.  I seriously hope I am way off base!

    I would hang on to the hope that comes with the nasal bone, too.  That seems like really positive and helpful information.  And maybe another opinion before going ahead with the risky CVS?  Ugh, what a catch-22.

    Given that you are as young as you are, now that begs - is there any family history of genetic disorders?

    (((HUGS)))

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  • Hang in there, my thoughts are with you.  I hope that you find positive results in the CVS and (hopefully) blood work. 
  • I'm so sorry. T&P's and I hope everything turns out good for you. Hang in there.
  • I hope staying positive pays off for you. I know this must be a shock for you and your DH. T&P for you! And remember you've always got us to talk to if you need to pass the time waiting. (((hugs)))
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  • Remember that at this point you know exactly the same things that you did going in. You know that your child may or may not have Down's syndrome and you know that the odds of having a perfectly healthy baby are in your favor.  You also know that no matter what that is your child and you will love it.
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  • I'm so sorry-thats such a hard thing to hear -especially when you don't know anything for certain. I'll definitely keep you and your H in my thoughts during the next week.

    IF you are interested you might check out Kelle Hampton's blog. https://www.kellehampton.com/
    Kelle had a daughter, Nella, unexpectedly born with Downs January 2010. She writes about the birth here-https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html
    Its beautiful, and very real. I've read it a couple of times, and it still makes me cry-but the birth story-and the next year and a half of stories- show how beautiful and full a baby/toddler with downs syndrome's life can be. Its kind of inspiring.

    I understand if you don't want to read it-it might be too hard right now-but its a different perspective that this diagnosis isn't the end of the world. And if you choose that the diagnosis means that you want to end the pregnancy, you'll have support here. No matter what you decide. GL.

     

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  • Keep us posted on the results!  We'll always be here for you and we're already sending positive thoughts your way.
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  • imageJillianAshley6:

    I'm so sorry-thats such a hard thing to hear -especially when you don't know anything for certain. I'll definitely keep you and your H in my thoughts during the next week.

    IF you are interested you might check out Kelle Hampton's blog. https://www.kellehampton.com/
    Kelle had a daughter, Nella, unexpectedly born with Downs January 2010. She writes about the birth here-https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html
    Its beautiful, and very real. I've read it a couple of times, and it still makes me cry-but the birth story-and the next year and a half of stories- show how beautiful and full a baby/toddler with downs syndrome's life can be. Its kind of inspiring.

    I understand if you don't want to read it-it might be too hard right now-but its a different perspective that this diagnosis isn't the end of the world. And if you choose that the diagnosis means that you want to end the pregnancy, you'll have support here. No matter what you decide. GL.

     

    All of this. You are in my thoughts and prayers and I hope everything turns out well for you. I can't imagine the fear you must feel. Just know that everything you are feeling is completely normal!



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  • Im so sorry for your news. My heart, thoughts, and prayers go out for you. My coworker has a son with a disability and she says its been a little more difficult but she loves him just the same. She told me that no matter the baby will still be the most important thing in the world and you can deal with whatever comes your way as a mom. Those were truely inspiring words. I hope for the best for you.

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  • Hi there, I also have a 1:6 chance for downs.  We are waiting 2 more weeks(actually due in Oct) for the amnio...  I am not sure about the nasal bone b/c my doctor said they don't look for that....Our NT measurement was 3.1, but we also had the bloodwork done....  83% is still pretty good odds, that is what my husband  reminding me of....good luck, and you are not alone!  At least you'll have answers sooner than later, I still have to wait until 5/12 for my amnio!!  Please let us know how everything goes..

    Amy :) 

     

     

  • I'm so sorry you had a less than great appointment ~ don't lose hope though ~ I've come across many stories where the NT scan was misleading and a CSV revealed that the baby was just fine - plus you get to find out the sex!
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  • I'm so sorry you have to go though this, you are definatly in my thoughts and prayers.  I agree that 83% is still very good odds, so try to focus on that!

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  • T&Ps to you and DH.....keep us posted
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  • so sorry to hear this. 1/6 is still really low, less than 20%. I hope your cvs gives you peace of mind.
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  • My T&P are with you, DH and your LO!  Please keep us updated and we are all here for you :) 
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  • imageldswims:
    imageSweetNSavory:
    imageldswims:

    Yeah, I like 83% much better.  May I ask how old you are?

    The other question I have is whether the bloodwork has come back yet.  The statistic isn't supposed to be based solely on the scan. 

    No matter what, my heart goes out to you.  Sometimes information isn't helpful.  It might be a blessing to know in advance, but it's a curse if this is a "false positive".

    Hang in there.  I am sending you and your DH and baby all the positive thoughts and prayers that I can.

    ((((HUGS))))

    I am "only" 24, and the place that did the scan says if you have an abnormal scan they don't need to do the bloodwork because they have enough evidence with the abnormal measurement. I hadn't heard of anyone else doing just the scan though.

    Thank you for your positive thoughts. It means a lot. 

    If I remember right someone last week had an abnormal scan but the bloodwork showed everything was just fine.  I will hope that's the case for you.  My ob won't even schedule a CVS without seeing the bloodwork results first.  I almost feel like there might be some twisting here so as to get paid for more expensive tests.  I seriously hope I am way off base!

    I would hang on to the hope that comes with the nasal bone, too.  That seems like really positive and helpful information.  And maybe another opinion before going ahead with the risky CVS?  Ugh, what a catch-22.

    Given that you are as young as you are, now that begs - is there any family history of genetic disorders?

    (((HUGS)))

    My second cousin has Downs but that is the only history we have. I am wondering why they don't do the bloodwork and move to the more risky CVS so soon. My midwife was really confidant in the doctor doing the test and we get to meet with her for counseling prior to the procedure so we can change our minds if we need to. I'm anxious for tomorrow. 

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  • imageAjen321:

    Hi there, I also have a 1:6 chance for downs.  We are waiting 2 more weeks(actually due in Oct) for the amnio...  I am not sure about the nasal bone b/c my doctor said they don't look for that....Our NT measurement was 3.1, but we also had the bloodwork done....  83% is still pretty good odds, that is what my husband  reminding me of....good luck, and you are not alone!  At least you'll have answers sooner than later, I still have to wait until 5/12 for my amnio!!  Please let us know how everything goes..

    Amy :) 

    I will keep you, DH and LO in my T & P's also. I am sorry you have to go through what I am going through, it really sucks. Thank you for responding, it is nice to know I am not alone (not that I wish this on you or anyone). ((HUGS)). 

     

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  • imageLifeInANutshell:
    I'm so sorry you had a less than great appointment ~ don't lose hope though ~ I've come across many stories where the NT scan was misleading and a CSV revealed that the baby was just fine - plus you get to find out the sex!

    You do?! Do they tell you no matter what or only if you want to know? 

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