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  #1  
March 9th, 2013, 03:45 PM
mommy2lilmen's Avatar Mega Super Mommy
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I got my NT scan done this past Tuesday March 5th and I got a call an hour later saying that my baby is at risk of Downs. I know its not the end of the world and I wouldn't change the baby for anything if he/she did have but I am having an emotional hard time. IS that selfish?? Im lost Im upset. I feel alone cus not many know of this pregnancy and the ones that do know of the results and I get told negative stuff. Even to abort now cus its not fair to bring a baby into the world with downs. Really?? Is that true. I just don't know how to feel. I refused the CVS and there is really not much testing here available in BC Canada. A lot in the USA tho and I am not prepared to go and find out what I will find out at birth out of pocket, if you know what I mean. I am going to go and get the pictures somehow. We just got the new computer and I have to figure out how to put them on here. I spent this past week in the peds part of the hospital with my 7 months old he was seriously sick and had to leave him to get the NT scan, was such bad news all week long. I was left alone. not even a hug from my DH. ugh. My baby is doing better we got sent home late Thursday but still. Ugh. will post pics asap


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Mommy to 7 boys and 1 girl!
Sean 16, Justin 13, Kevin 11, Jayson 10, Bryce 4, Seth 3 & Kade 1
4 babies 94,95,99, 08~TL April 2003 & Sept 2013 TR May 2008

~~~~~~~~~~~~~~~~~~~~~~~~~~
Blessed with 1 Autistic and 1 Down Syndrome child
~~~~~~~~~~~~~~~~~~~~~~~~~~
Alyssa Marie Jade
September 1, 2013 @ 11:01pm 6lb 8oz & 18.5in
Emerg C Sec, Down Syndrome blessing, AVSD, Hirschsprungs, G tube
58 day NICU stay, Sept 1- Oct 29 2013






Last edited by mommy2lilmen; March 9th, 2013 at 07:02 PM.
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  #2  
March 9th, 2013, 04:23 PM
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I'm not sure what a NT scan is, what I can tell you is that Aiden was at risk for downs also. We could have had an amnio to find out for sure but chose not to.

The truth is most Downs babies grow up to be happy, always happy, healthy and productive citizens of society. They may not fit into the ideal of 'normal', but they are also not a sentence of doom for parents.

Learn all that you can, just in case, we did, and then hope for the best. You'd be surprised how many woman are told that their babies are at risk and it the baby is born perfectly normal.
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  #3  
March 9th, 2013, 05:34 PM
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agreed ^^^^. first of all, its just a risk. at least knowing that, they will monitor you closely i would suspect. it will give you time to prepare for whatever may or may not happen at birth. many downs kids have heart issues, in my limited experience. better to be prepared in advance.

that all said, i can say that i taught two girls with downs in middle school. one in particular was not babied at home AT ALL and was exposed to lots of learning experiences from the very beginning as well as kept in regular classes with RSP support. she did great, was able to pretty much all that the other kids did, and participate in most extra-curricular activities that interested her. she was such a loving young lady - i adored her. it certainly is not a death sentence or a shameful thing anymore at all.

so though you have a chance at this, the odds are that you are going to have a healthy baby. i do know a lady that was told about 20 years ago via testing that her baby had downs and what did she want to do about it. she went on with her pregnancy and guess what? her daughter was not born with downs syndrome or any other complication. she is a beautiful self-sufficient young lady now as an adult.

i vote that you just keep your hopes in order and proceed with the opportunity to learn more and be prepared. then see what happens. either way, whomever you give birth to will be a blessing in your life. (((annick)))))
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  #4  
March 9th, 2013, 07:04 PM
mommy2lilmen's Avatar Mega Super Mommy
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Quote:
Originally Posted by mom2many2010 View Post
I'm not sure what a NT scan is, what I can tell you is that Aiden was at risk for downs also. We could have had an amnio to find out for sure but chose not to.

The truth is most Downs babies grow up to be happy, always happy, healthy and productive citizens of society. They may not fit into the ideal of 'normal', but they are also not a sentence of doom for parents.

Learn all that you can, just in case, we did, and then hope for the best. You'd be surprised how many woman are told that their babies are at risk and it the baby is born perfectly normal.
NT is a Nuchal scan they do to check for the thickness of the neck, nasal bone and heart. Mainly the thickness of the neck
Your boy was at risk, what happened after?

Quote:
Originally Posted by MIL2lissy8 View Post
agreed ^^^^. first of all, its just a risk. at least knowing that, they will monitor you closely i would suspect. it will give you time to prepare for whatever may or may not happen at birth. many downs kids have heart issues, in my limited experience. better to be prepared in advance.

that all said, i can say that i taught two girls with downs in middle school. one in particular was not babied at home AT ALL and was exposed to lots of learning experiences from the very beginning as well as kept in regular classes with RSP support. she did great, was able to pretty much all that the other kids did, and participate in most extra-curricular activities that interested her. she was such a loving young lady - i adored her. it certainly is not a death sentence or a shameful thing anymore at all.

so though you have a chance at this, the odds are that you are going to have a healthy baby. i do know a lady that was told about 20 years ago via testing that her baby had downs and what did she want to do about it. she went on with her pregnancy and guess what? her daughter was not born with downs syndrome or any other complication. she is a beautiful self-sufficient young lady now as an adult.

i vote that you just keep your hopes in order and proceed with the opportunity to learn more and be prepared. then see what happens. either way, whomever you give birth to will be a blessing in your life. (((annick)))))
I had many days to think about this, cry and what not. I feel to cry still BUT only cus of how my family feels. I don't get it, why turn your back on a human being. I don't know. On Tuesday I wil go see what the medical genetics dr says and go from there. I cant do much more than that at this point. I don't want to over react, which too late I did and I done so much research. Ugh. I wil update you all next week tho.
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Sean 16, Justin 13, Kevin 11, Jayson 10, Bryce 4, Seth 3 & Kade 1
4 babies 94,95,99, 08~TL April 2003 & Sept 2013 TR May 2008

~~~~~~~~~~~~~~~~~~~~~~~~~~
Blessed with 1 Autistic and 1 Down Syndrome child
~~~~~~~~~~~~~~~~~~~~~~~~~~
Alyssa Marie Jade
September 1, 2013 @ 11:01pm 6lb 8oz & 18.5in
Emerg C Sec, Down Syndrome blessing, AVSD, Hirschsprungs, G tube
58 day NICU stay, Sept 1- Oct 29 2013





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  #5  
March 9th, 2013, 07:26 PM
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Quote:
Originally Posted by mommy2lilmen View Post
NT is a Nuchal scan they do to check for the thickness of the neck, nasal bone and heart. Mainly the thickness of the neck
Your boy was at risk, what happened after?
Yep, and he is perfectly fine.

Was the scan a high resolution one? It doesn't look like it from the pic's but I could be wrong.

They do a test here (I can not remember what it is called) and he showed a high risk, so we did an ultrasound, and it was inconclusive. They were seeing the pockets, and such but it was 'iffy'. After that we did the high resolution where things looked 'okay', but they really couldn't say for sure. The only other option was an amnio and it wasn't worth the risk because it wouldn't have changed the outcome.

I've also had two friends that were told there babies would be downs babies (no amnio's) and both of those babies are now healthy normal adult/teens.
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  #6  
March 9th, 2013, 07:31 PM
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I'm sorry you have to worry about this. Quite honestly, several of my friends have also been told their children were at risk, and all of them were born with no downs. The odds for the triple-screen test were something like 1 in 40, and then you can confirm with an amnio if you want. I'm not familiar with the test you had...I don't think it was offered to me.

I know you will love this child either way. People with downs syndrome have so much to offer and can lead really full lives. I'm sure the not knowing is hard though.
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  #7  
March 9th, 2013, 08:04 PM
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ps: after looking at those pictures, i'd say girl......i am not an expert by any means but the heart rate is 143 (girl) and that picture of the legs did not have anything floating in the middle of them.
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  #8  
March 9th, 2013, 08:32 PM
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I had a red flag, early testing with dc4 (ds3) He was elevated risk for spina bifida. At their suggestion and with dhs encouragement they did further testing. Genetic counseling, a more involved ultrasound and finally an amnio. That extra testing thankfully revealed that he was ok. I was alone when I found out the initial results and spent weeks worrying. I spent a bunch of time online searching and....
Hopefully the same will be true for you in that you will have had needless worry and that dc will be born healthy.

ps with the 2 that followed I opted not to have early testing done.
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  #9  
March 10th, 2013, 12:43 AM
mommy2lilmen's Avatar Mega Super Mommy
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Quote:
Originally Posted by mom2many2010 View Post
Yep, and he is perfectly fine.

Was the scan a high resolution one? It doesn't look like it from the pic's but I could be wrong.

They do a test here (I can not remember what it is called) and he showed a high risk, so we did an ultrasound, and it was inconclusive. They were seeing the pockets, and such but it was 'iffy'. After that we did the high resolution where things looked 'okay', but they really couldn't say for sure. The only other option was an amnio and it wasn't worth the risk because it wouldn't have changed the outcome.

I've also had two friends that were told there babies would be downs babies (no amnio's) and both of those babies are now healthy normal adult/teens.
I'm not sure if was high resolution.. I am going to ask for the level 2 anatomy scan in a few weeks. I'm not beleivinf this scan until a few other tests are done if possible

Quote:
Originally Posted by ~mommy~ View Post
I had a red flag, early testing with dc4 (ds3) He was elevated risk for spina bifida. At their suggestion and with dhs encouragement they did further testing. Genetic counseling, a more involved ultrasound and finally an amnio. That extra testing thankfully revealed that he was ok. I was alone when I found out the initial results and spent weeks worrying. I spent a bunch of time online searching and....
Hopefully the same will be true for you in that you will have had needless worry and that dc will be born healthy.

ps with the 2 that followed I opted not to have early testing done.
I'm going to ask for the level 2 scan in a few weeks. I do not want the amnio if possible. I never had this with the others cus I was younger. I'm 35 now

Quote:
Originally Posted by ~mommy~ View Post
I had a red flag, early testing with dc4 (ds3) He was elevated risk for spina bifida. At their suggestion and with dhs encouragement they did further testing. Genetic counseling, a more involved ultrasound and finally an amnio. That extra testing thankfully revealed that he was ok. I was alone when I found out the initial results and spent weeks worrying. I spent a bunch of time online searching and....
Hopefully the same will be true for you in that you will have had needless worry and that dc will be born healthy.

ps with the 2 that followed I opted not to have early testing done.
I'm going to ask for the level 2 scan in a few weeks. I do not want the amnio if possible. I never had this with the others cus I was younger. I'm 35 now

Quote:
Originally Posted by ~mommy~ View Post
I had a red flag, early testing with dc4 (ds3) He was elevated risk for spina bifida. At their suggestion and with dhs encouragement they did further testing. Genetic counseling, a more involved ultrasound and finally an amnio. That extra testing thankfully revealed that he was ok. I was alone when I found out the initial results and spent weeks worrying. I spent a bunch of time online searching and....
Hopefully the same will be true for you in that you will have had needless worry and that dc will be born healthy.

ps with the 2 that followed I opted not to have early testing done.
I'm going to ask for the level 2 scan in a few weeks. I do not want the amnio if possible. I never had this with the others cus I was younger. I'm 35 now

Quote:
Originally Posted by ~mommy~ View Post
I had a red flag, early testing with dc4 (ds3) He was elevated risk for spina bifida. At their suggestion and with dhs encouragement they did further testing. Genetic counseling, a more involved ultrasound and finally an amnio. That extra testing thankfully revealed that he was ok. I was alone when I found out the initial results and spent weeks worrying. I spent a bunch of time online searching and....
Hopefully the same will be true for you in that you will have had needless worry and that dc will be born healthy.

ps with the 2 that followed I opted not to have early testing done.
I'm going to ask for the level 2 scan in a few weeks. I do not want the amnio if possible. I never had this with the others cus I was younger. I'm 35 now

Quote:
Originally Posted by MIL2lissy8 View Post
ps: after looking at those pictures, i'd say girl......i am not an expert by any means but the heart rate is 143 (girl) and that picture of the legs did not have anything floating in the middle of them.
Even at 12 w 4 d is it possible to see anything between the legs?? I hope girl !!!
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Sean 16, Justin 13, Kevin 11, Jayson 10, Bryce 4, Seth 3 & Kade 1
4 babies 94,95,99, 08~TL April 2003 & Sept 2013 TR May 2008

~~~~~~~~~~~~~~~~~~~~~~~~~~
Blessed with 1 Autistic and 1 Down Syndrome child
~~~~~~~~~~~~~~~~~~~~~~~~~~
Alyssa Marie Jade
September 1, 2013 @ 11:01pm 6lb 8oz & 18.5in
Emerg C Sec, Down Syndrome blessing, AVSD, Hirschsprungs, G tube
58 day NICU stay, Sept 1- Oct 29 2013





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  #10  
March 10th, 2013, 08:27 AM
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Okay, a level 2 and a high resolution are pretty much the same thing: different names.

I forgot about genetic counseling, we did that also, I even think (without doing the math this early in the morning) I was about your age with Aiden, maybe a little younger.
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  #11  
March 10th, 2013, 08:31 AM
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(((hugs))) that must be so scary to hear. I've been told that there is such a high incidence of false positive with the NT scan that I never consented to doing one because the worry would have really gotten under my skin. I've also heard that they factor age into the algorithm they use to determine the risk factor they give you, so some of that risk is just from being 35, not even from the scan.

I know you said there isn't as much testing available in BC as in the US, but if you have access to a private lab, the Harmony21 test takes about 2 weeks to get results back and costs $225 and separates fetal DNA from maternal blood (it's just a blood test, no risk to baby) and assesses your risk level more accurately (though, not as accurately as an amnio, but still, no risk to baby) by looking at how often chromosomes 13, 18 and 21 show up in the sample.

I'm glad that you are going to get more detailed imaging done and that you are ready to love and raise your baby regardless of the testing. I'm sad that your family is being so unsupportive and that they would be so eager to end a life just because there is a chance of not being 100% normal--like M2M said, Downs babies grow up, happily and it is reasonable to hope for an amount of autonomy.

Hugs and prayers to you and your family. And I'm glad that your baby is improving and out of the hospital. That must have been such a trying week for you and your family.
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  #12  
March 10th, 2013, 12:52 PM
mommy2lilmen's Avatar Mega Super Mommy
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Quote:
Originally Posted by mom2many2010 View Post
Okay, a level 2 and a high resolution are pretty much the same thing: different names.

I forgot about genetic counseling, we did that also, I even think (without doing the math this early in the morning) I was about your age with Aiden, maybe a little younger.
I have genetic counselling on Tuesday, what should I ask??
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Mommy to 7 boys and 1 girl!
Sean 16, Justin 13, Kevin 11, Jayson 10, Bryce 4, Seth 3 & Kade 1
4 babies 94,95,99, 08~TL April 2003 & Sept 2013 TR May 2008

~~~~~~~~~~~~~~~~~~~~~~~~~~
Blessed with 1 Autistic and 1 Down Syndrome child
~~~~~~~~~~~~~~~~~~~~~~~~~~
Alyssa Marie Jade
September 1, 2013 @ 11:01pm 6lb 8oz & 18.5in
Emerg C Sec, Down Syndrome blessing, AVSD, Hirschsprungs, G tube
58 day NICU stay, Sept 1- Oct 29 2013





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  #13  
March 10th, 2013, 01:02 PM
mommy2lilmen's Avatar Mega Super Mommy
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Originally Posted by Jenilope View Post
(((hugs))) that must be so scary to hear. I've been told that there is such a high incidence of false positive with the NT scan that I never consented to doing one because the worry would have really gotten under my skin. I've also heard that they factor age into the algorithm they use to determine the risk factor they give you, so some of that risk is just from being 35, not even from the scan.

I know you said there isn't as much testing available in BC as in the US, but if you have access to a private lab, the Harmony21 test takes about 2 weeks to get results back and costs $225 and separates fetal DNA from maternal blood (it's just a blood test, no risk to baby) and assesses your risk level more accurately (though, not as accurately as an amnio, but still, no risk to baby) by looking at how often chromosomes 13, 18 and 21 show up in the sample.

I'm glad that you are going to get more detailed imaging done and that you are ready to love and raise your baby regardless of the testing. I'm sad that your family is being so unsupportive and that they would be so eager to end a life just because there is a chance of not being 100% normal--like M2M said, Downs babies grow up, happily and it is reasonable to hope for an amount of autonomy.

Hugs and prayers to you and your family. And I'm glad that your baby is improving and out of the hospital. That must have been such a trying week for you and your family.
Hmmm I am not sure if we have private labs here, I would assume we do?? WHere would they be lol I wonder if maybe DH and I take a weekend day when the older 4 boys are gone to their dads and go and get this test done in the USA . Its not that I don't want to spend the money or don't have it for this baby, its the thing is, if this baby does in fact have it, will having the blood test change things, no.. I guess I need to prepare myself and doing all the tests is the big thing.

My family, they are the type that sees a specially challenged child as being a nussance to the society and a waste of cash to support it and give it therapy. Much like when I told them my son had autism, they thought that was the death senetence. I got grilled so much, my son got analyzed each time they came over. I would get told, see your getting this diagnosis for nothing, just lazy mom you are, you you you, and then one sister cried as if we had to bury our son. I was like really? She has yet to come back over since. doesn't want to see her nephew like that..ummm ?? he just doesn't talk lol Its not like hes terminally and even then she should be supportive right? I remember when my dad was alive he would be disgusted by any special needs person, it freaks me out that maybe this baby may be and what my family will do and say . My mil wants me to abort the baby befor even finding out if its normal, cus the stress out weigh the benefits at birth. I told my DH that and he says idk what to say about her. Ummmm ugh. Ya, so I don't know. I need to find out with another test, if the two show same then I wil believe it.
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Sean 16, Justin 13, Kevin 11, Jayson 10, Bryce 4, Seth 3 & Kade 1
4 babies 94,95,99, 08~TL April 2003 & Sept 2013 TR May 2008

~~~~~~~~~~~~~~~~~~~~~~~~~~
Blessed with 1 Autistic and 1 Down Syndrome child
~~~~~~~~~~~~~~~~~~~~~~~~~~
Alyssa Marie Jade
September 1, 2013 @ 11:01pm 6lb 8oz & 18.5in
Emerg C Sec, Down Syndrome blessing, AVSD, Hirschsprungs, G tube
58 day NICU stay, Sept 1- Oct 29 2013





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  #14  
March 10th, 2013, 02:47 PM
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(((HUGS))) You have the right to feel the way your feeling. It's no different than if one of your older dc were suddenly diagnosed with something scary and unexpected. You love your child and you don't want them to have to struggle with any setbacks. It's our maternal natural.
I don't have much advice to give on the testing but I do know false positives are greater than actual positives. I was told with #3 that the cerebellum wasn't developing right. Further testing showed it was just fine but I made myself sick with worry during that time, literally.
I'm sorry your not getting the support you need from family but you seem to already know in your heart they are wrong. Find support elsewhere. You have us here and I'm sure there a lots of groups where moms have went through this.
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  #15  
March 10th, 2013, 02:51 PM
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Wow. I'm sorry, but your family has a horrible attitude about special needs kids! It may be, if your child does end up having Downs, that you'll have to cut off contact with them or something. It would be horrible for your baby to grow up with that attitude and possible nasty comments constantly being thrown at him or her!

On a side note, my step-mom was told with her last two pregnancies that something was wrong. With one, she was told there was no heartbeat and they urged her to abort asap. She waited and at the next visit, there was the heartbeat!
With her last pregnancy the doctors pulled a similar stunt and told her that the baby was going to have growth issues...maybe even end up as a "small person" (or whatever the politically correct name is). He ended up being the tallest 2-year-old I've ever seen and has grown well ever since!
It seems to me that, more often than not, the doctors/scans are wrong with their tests. Of course, it's good to be prepared if you have a suspicion, but I can't help but think the medical community worries mothers for no reason.
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  #16  
March 10th, 2013, 04:48 PM
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Originally Posted by mommy2lilmen View Post
I have genetic counselling on Tuesday, what should I ask??

They will ask you a ton of questions, questions about the health of everyone as far back as you know or can remember. So try to think on those things, beyond that I found mine was thorough enough that I didn't have any questions when we left.
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  #17  
March 10th, 2013, 04:56 PM
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What a week you've had! How is your youngest, since he was hospitalized, is he getting all better?

I don't know a whole lot about extra testing etc. I did have issues with my second pregnancy, and Down Syndrome did come up. (she is perfectly healthy). It is emotionally hard, and you just need some time to process. You're NOT a bad person for having a hard time with this, I'd say it's very normal.

I'm sorry that your family is the way they are. I believe that each child is a blessing and a gift...they may not be how we dreamt or imagined them to be, but each of them is precious.
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  #18  
March 10th, 2013, 08:33 PM
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Quote:
Originally Posted by MIL2lissy8 View Post
ps: after looking at those pictures, i'd say girl......i am not an expert by any means but the heart rate is 143 (girl) and that picture of the legs did not have anything floating in the middle of them.
Even at 12 w 4 d is it possible to see anything between the legs?? I hope girl !!!


my DIL has her NT scan done at about 13 weeks exactly and we were very able to see that one baby was a boy...no doubt! the other baby was squished in there so we did not find out about who he was for a few more weeks. it could happen, ya know!!!! i will pray pink for you.
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  #19  
March 10th, 2013, 10:42 PM
~mommy~'s Avatar Mega Super Mommy
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I was 34 with ds3. The testing was offered with all of them, age did not play a factor. The following 2 were born when I was 36 and 38.
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  #20  
March 11th, 2013, 10:33 AM
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My pregnancy this time (at a Level 2 ultrasound because I refuse all early testing) came back with an increased nuchal fold thickness. Everything else, however, looked fine. After meeting with maternal fetal medicine, a genetic counselor, and having a Level 3 ultrasound, the doctor firmly believed that it was a "false positive" reading. We did opt to have the Harmony blood test done since it is non-invasive, and though it took longer to come back than anticipated, my risk was dropped to 1 in 10,000. That was quite a change from the 1 in 24, based on nuchal fold thickness alone. We refused amnio because we felt the risks were too great, and the outcome would not change anything. Of course, no one knew about our pregnancy at that point (20 weeks) so there was no one to tell except me and hubby.

I hope that your results come back fine!
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