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Babywish2
LIF Infant
Member since 4/14 158 total posts
Name:
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Genetic counselor?
So I saw high risk doctor today for an abnormal nt scan. Normal measurement should be under 3. Mine is 4.6. Dr is concerned and sending me to genetic counselor for consult and further testing. I go on Thursday.
What can I expect for those who have btdt? And if you could, can you say a prayer for me. I'm driving myself crazy with worry. I can't stop crying. 
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Posted 6/30/14 3:12 PM  |
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mrsm-2011
He is my world!
Member since 6/12 3009 total posts
Name:
Theresa
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Re: Genetic counselor?
No experience with this but I will keep you and your baby in my prayers. 
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| Posted 6/30/14 3:13 PM |
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Re: Genetic counselor?
At the meeting with the genetic counselor, they will take a thorough family history - so if you can, know your ancestry and any medical conditions present in your family. If anything stands out with that, they will go over it with you. They will also explain the results of tests already done and what further tests can be done, and what those results can tell you. It's a lot of information basically. It's a clear presentation of all options from this point forward. Prayers and positive thoughts for you. It's normal to feel very upset, wishing you strength as well 
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| Posted 6/30/14 3:18 PM |
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AKD
LIF Adult
Member since 1/12 2637 total posts
Name:
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Re: Genetic counselor?
Posted by mrsm-2011
No experience with this but I will keep you and your baby in my prayers.
Exactly this! Tons of for you and your baby!!!
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| Posted 6/30/14 3:23 PM |
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Hopefulmama
LIF Adult
Member since 4/14 1014 total posts
Name:
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Re: Genetic counselor?
4.6 is not horrible. One of my babies had around 4 and two weeks later he had a totally normal measurement and now is a totally normal two year old. I was told the association for chromosomal issues is higher when the measurement is like 8 or 9. Try to stay calm but I remember how awful the waiting was :( definitely praying for you and your little bean.
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| Posted 6/30/14 3:28 PM |
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Babywish2
LIF Infant
Member since 4/14 158 total posts
Name:
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Genetic counselor?
Thanks girls. The high risk doctor basically said it's a 50% chance that something is wrong so I'm of course freaking out. I don't get how he even got to that conclusion since my blood work has not came back yet. I'm of course freaking out because that's a terrible percentage. I just don't get how he figures when everything else on the sonogram looks fine. I don't have a ratio and he didn't give me one. Is that something a genetic counselor determines? I just can't deal. I can't concentrate and I have very little appetite. I'm devastated.
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| Posted 6/30/14 4:12 PM |
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babyvibes
LIF Adult
Member since 7/13 1350 total posts
Name:
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Re: Genetic counselor?
Posted by LiveForMoments
At the meeting with the genetic counselor, they will take a thorough family history - so if you can, know your ancestry and any medical conditions present in your family. If anything stands out with that, they will go over it with you. They will also explain the results of tests already done and what further tests can be done, and what those results can tell you. It's a lot of information basically. It's a clear presentation of all options from this point forward. Prayers and positive thoughts for you. It's normal to feel very upset, wishing you strength as well
This was exactly my experience. I am a CF carrier and even though DH was tested and is not a carrier, they still referred me to a GC. Also, I had elevated AFP levels, which indicates an increased risk for spina bifida and neural tube defects, after my 2nd tri screen. I chose not to have an amnio or any further testing because my sonos always looked fine, with no indications of any abnormalities. DD is 4 weeks tomorrow and perfect.
Good luck! I know it is nerve wracking but I'm sure everything will be fine!
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| Posted 6/30/14 4:28 PM |
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BabyDayz
LIF Adolescent
Member since 1/11 719 total posts
Name:
Samantha
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Genetic counselor?
Praying for you of course! I'm sure everything will be fine, drs always gave a way of making us worry. Nowadays they have so much info sometimes it just worries us instead of helping us. Dr found little things here and there with thus pregnancy that gave seemed to work themselves out so far. Tons of hugs! Let me know if you want to go out and chat.
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| Posted 6/30/14 6:18 PM |
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ANR1211
My loves
Member since 2/11 2131 total posts
Name:
A
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Genetic counselor?
Did your doctor go over the NT scan and it's accuracy percentage? Mine wasn't concerned with an NT scan because it's only 60% accurate (or something like that), but jumps to 90% with the 16 week sono or blood work (again, not positive - but it's something the genetic counselor went over - apparently there is a high number of false positives).
Anyway, of course you are going to be a wreck, but don't stress yourself TOO much until you see a genetic counselor. I HAD to see a genetic counselor to get my results (my dr won't go over them). She went over a family history and then broke down my odds based on the tests. It was nice to talk to someone who could break everything down so nicely. GOOD LUCK!!!!!!!!!!
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| Posted 6/30/14 10:51 PM |
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LIRascal
drama. daily.
Member since 3/11 7287 total posts
Name:
Michelle
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Genetic counselor?
Just remember, they often have to cover their butts. When you go for genetic counseling, they will tell you about the margin of error on those tests, and that a scan is merely sound waves projected onto a screen. Haphazard at best! I am praying for your sanity through this... You're supposed to be very zen right now
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| Posted 6/30/14 11:08 PM |
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Babywish2
LIF Infant
Member since 4/14 158 total posts
Name:
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Re: Genetic counselor?
Posted by ANR1211
Did your doctor go over the NT scan and it's accuracy percentage? Mine wasn't concerned with an NT scan because it's only 60% accurate (or something like that), but jumps to 90% with the 16 week sono or blood work (again, not positive - but it's something the genetic counselor went over - apparently there is a high number of false positives).
Anyway, of course you are going to be a wreck, but don't stress yourself TOO much until you see a genetic counselor. I HAD to see a genetic counselor to get my results (my dr won't go over them). She went over a family history and then broke down my odds based on the tests. It was nice to talk to someone who could break everything down so nicely. GOOD LUCK!!!!!!!!!!
he didn't go over that in too much detail. He basically said that my odds were 50% that something is wrong. Not even sure what he meant by that or if he meant that's what the accuracy of the test was? I'm very confused because those odds sound horrible. He was honestly the worst doctor to talk to. He wasn't very optimistic and very negative. He urged that I see a genetic counselor right away because he was very concerned. I see the genetic counselor on Thursday. Hopefully they can give me a better idea of what's going on.
Thank you!
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| Posted 7/1/14 4:08 AM |
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Hopefulmama
LIF Adult
Member since 4/14 1014 total posts
Name:
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Re: Genetic counselor?
They told me 50/50 too. They were incredibly negative and awful and my kid is FINE. A sono tech there told me that unfortunately they are advised by hospital lawyers about what to say. Meaning they have to scare the crap out of you with all the worst case possibilities to cover theo a$$ in the event of a bad outcome. I can't say for sure that that's true, but that is what she told me. Hang in there and stay positive!!!
Message edited 7/1/2014 8:45:16 AM.
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| Posted 7/1/14 8:43 AM |
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ANR1211
My loves
Member since 2/11 2131 total posts
Name:
A
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Re: Genetic counselor?
Posted by Babywish2
Posted by ANR1211
Did your doctor go over the NT scan and it's accuracy percentage? Mine wasn't concerned with an NT scan because it's only 60% accurate (or something like that), but jumps to 90% with the 16 week sono or blood work (again, not positive - but it's something the genetic counselor went over - apparently there is a high number of false positives).
Anyway, of course you are going to be a wreck, but don't stress yourself TOO much until you see a genetic counselor. I HAD to see a genetic counselor to get my results (my dr won't go over them). She went over a family history and then broke down my odds based on the tests. It was nice to talk to someone who could break everything down so nicely. GOOD LUCK!!!!!!!!!!
he didn't go over that in too much detail. He basically said that my odds were 50% that something is wrong. Not even sure what he meant by that or if he meant that's what the accuracy of the test was? I'm very confused because those odds sound horrible. He was honestly the worst doctor to talk to. He wasn't very optimistic and very negative. He urged that I see a genetic counselor right away because he was very concerned. I see the genetic counselor on Thursday. Hopefully they can give me a better idea of what's going on.
Thank you!
Did he give you odds? "High risk" is 1 out of 40,000 odds. 1 in over 10,000 odds is the best odds they'll give you. 1/2 would be a 50 50 chance. I doubt your odds are that bad. 2 more days until you find out exactly what the odds are!
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| Posted 7/1/14 9:27 AM |
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Babywish2
LIF Infant
Member since 4/14 158 total posts
Name:
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Re: Genetic counselor?
Posted by Hopefulmama
They told me 50/50 too. They were incredibly negative and awful and my kid is FINE. A sono tech there told me that unfortunately they are advised by hospital lawyers about what to say. Meaning they have to scare the crap out of you with all the worst case possibilities to cover theo a$$ in the event of a bad outcome. I can't say for sure that that's true, but that is what she told me. Hang in there and stay positive!!!
its good to know I'm not alone. It makes me feel so much better. Sorry it happened to you too, though. This doctor was just awful. Plain awful.
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| Posted 7/1/14 9:38 AM |
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Babywish2
LIF Infant
Member since 4/14 158 total posts
Name:
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Re: Genetic counselor?
Posted by ANR1211
Posted by Babywish2
Posted by ANR1211
Did your doctor go over the NT scan and it's accuracy percentage? Mine wasn't concerned with an NT scan because it's only 60% accurate (or something like that), but jumps to 90% with the 16 week sono or blood work (again, not positive - but it's something the genetic counselor went over - apparently there is a high number of false positives).
Anyway, of course you are going to be a wreck, but don't stress yourself TOO much until you see a genetic counselor. I HAD to see a genetic counselor to get my results (my dr won't go over them). She went over a family history and then broke down my odds based on the tests. It was nice to talk to someone who could break everything down so nicely. GOOD LUCK!!!!!!!!!!
he didn't go over that in too much detail. He basically said that my odds were 50% that something is wrong. Not even sure what he meant by that or if he meant that's what the accuracy of the test was? I'm very confused because those odds sound horrible. He was honestly the worst doctor to talk to. He wasn't very optimistic and very negative. He urged that I see a genetic counselor right away because he was very concerned. I see the genetic counselor on Thursday. Hopefully they can give me a better idea of what's going on.
Thank you!
Did he give you odds? "High risk" is 1 out of 40,000 odds. 1 in over 10,000 odds is the best odds they'll give you. 1/2 would be a 50 50 chance. I doubt your odds are that bad. 2 more days until you find out exactly what the odds are!
As in a ratio? No. He only said he could tell me I had a 50% chance something is wrong. I sure hope it's not 1:2. That's a terrible outcome, but I can't see how that's even accurate. He didn't even have my bloodwork from my regular ob. Just the measurement of the Sono. I asked about the bloodwork too and be basically said well the bloodwork doesn't matter. It will probably be just as bad.
I'm telling you this guy was awful. Just so negative. The appt did nothing except make me feel worse. And it's not like he gave me any new info. It was basically to just double check on my regular ob's findings.
And yes I just can't wait until tomorrow. I just want answers. This waiting game is just pure torture. I can't live like this. I'm crying constantly, I can't sleep, I have no appetite and it's hard to concentrate at work. This is just not the kind of stress I need. This is supposed to be a happy time in my life.
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| Posted 7/1/14 9:45 AM |
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debbiedee77
LIF Toddler
Member since 5/10 435 total posts
Name:
Debbie
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Re: Genetic counselor?
My story, this should help you feel better. I had a high NT scan, about 4. Dr. sent me to a high risk Dr. High risk Dr was such a downer.......she said my NT scan combined with my bloodwork indicated a 1:9 chance of downs. I was also told clubbed feet,,,,,and the baby has an extra digit. I still refused the amnio. They were SO PUSHY about the amnio......just to warn you. Long story short, my 5 year old son is fine......no clubbed feet, he did have an extra digit which looked more like a skin tag that was removed when he was 9 days old. These tests cause so much stress and worry......and put such a damper on the pregnancy. I hate these tests!!!! Good luck and I'm sure all will be fine.
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| Posted 7/1/14 3:16 PM |
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