Babies: 0 - 3 Months
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If you had an elevated NT measurement, please come in.

I figured I would post this here since you ladies have now had your babies.

I had my NT scan yesterday and the measurement came back not so favorable at 3.6mm. The genetic counselor said there was no point in doing the blood work also because the odds are a ratio of the blood work and measurement and with a bad measurement, the odds will almost always be "grim". 

I left the appointment completely devastated because they said our baby has a 50/50 chance of having a trisomy disorder, heart defect or other syndrome like Turner's. 

We will not get an amnio or CVS. DH had a daughter in a previous relationship that passed away shortly after an amnio and he struggles deeply with it, so it's just not something we are comfortable doing. 

Basically, now we just wait until our anatomy scan in November and our echo-cardiogram in December to look for anything else. 

Would you mind sharing your experience if you had an elevated NT measurement? TIA. 

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Re: If you had an elevated NT measurement, please come in.

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    Hello!  I did not have an elevated NT measurement because we chose not to get one.  I knew that if it came back positive I wasn't willing to do an amnio so I decided not to give myself any undo stress.

    That being said, I work at a fertility clinic where we do NT measurements, and just wanted to reassure you that they are not a perfect science.  There is a lot of mixed information on how many false "positives" come up when everything is actually fine, but we hear plenty of stories where that is the case.  Gl and try to stay positive.

     

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    I had an NT scan with DS and it was thicker than that (cant remember exactly now), We did the blood work and it came back badly also. Our risk was 1/90.... I dont think my just one measurement they can give you a 50/50 chance... I would HONESTLY get another opinion I dont think that the info that you got is accurate. 

    We saw an MFM and had repeated anatomy scans looking for markers, we had an echo and we were suggested to have an amnio but did not.

    DS was born perfect with no issues (except being born early due to severe pre-e).

    I hope that this gives you some peace of mind. I am here if you have any other questions! My suggestion, A SECOND OPINION! 

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    Thank you for the replies. I am going to call back when the office opens on Monday and insist on getting the blood work done. We were so upset at the appointment and just trusted what the genetic counselor said regarding not needing the blood work and "50% chance". Does that mean my odds are 1:2 based on the measurement alone? I'm now realizing it doesn't make the most sense.
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    I have never posted anything on this board but after reading your story I feel like it is important to share my own.  At 11 weeks pregnant my husband and I went in for our NT scan.  We were told that our fluid number was over 11.  We were also told not to have the blood work done and were sent to a genetic counselor who informed us that we had only a 15% chance of having a healthy baby.  On Valentines Day (our first as a married couple) we had a CVS done ... and so began our very long journey of prenatal testing.  When our CVS came back clear the doctors were shocked.  We were referred to a high risk doctor to continue our care, who suggested that we have a microarray done.  We waited weeks for the results to come back and that too was negative.  Still in doubt, our genetic counselor suggested that we send our son's blood work to Northwestern for an increased NT panel test.  Again, we waited for weeks and the test came up negative.  With three sets of genetic testing clear, we were sent for a fetal echocardiogram .... it also came back with nothing.  At this point my husband and I were emotionally drained from all of this testing and we decided to let go and wait.  5 weeks ago I gave birth to a beautiful baby boy who is happy and healthy!  He did not have to go to the NICU, has no signs of the "cystic hygroma" we were told he had but had then resolved, and his pediatrician thinks that he is perfectly healthy.  I hope that this story can help those of you who are going through a similar experience.  It truly is hell to go through.  My biggest suggestion is to find a high risk doctor who you trust and, if you decide to go through all of the testing, do it right away.  Waiting for one set of testing to come back before you decide to have another one done prolongs an already difficult situation.  Wishing you the best of luck!
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    I have NEVER heard of it being interpreted like that. My NT scan measurement was thicker than yours and then my bloodwork came back and made the results even worse and my chances were not 50/50.... doesnt add up in my head. As a medical professional (I am an RN and in grad school for my nurse practitioner) you have to stand up for what you want and seek other opinions when things dont seem right, be your own advocate!!!

    I really hope to hear good news from you because I think that you were misled and your chances arent nearly that bad. I would say too that you can go get an anatomy scan anytime after 17 weeks and look for other "soft" markers too. We did not see any soft markers so we didnt do the amnio.

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    I was in your *exact* same situation.  I went for the NT scan, had a measurement of 3.3mm with some septations seen, and was given all kinds of devastating information.  We were told the baby had a 60-75% chance of Downs, Turners, or one of the other trisomy disorders.  They would not do blood work on me either - said it would just come back abnormal.  We were presented with our "options", which included termination.  We were basically told there was almost no chance of having a "normal" baby - that if things were fine chromosomally, there was probably a heart problem.  I don't remember ever being so upset as I was walking out of that appointment.

    We chose to go ahead with the CVS.  It worked out well for us, and the results came back completely normal.  So we waited and had the 20 week anatomy scan.  Again, normal.  Then we did a fetal echo at 22 weeks - normal.  At that point, MFM released us and said we had no greater risk than anyone else in the world of having any problems and needed no further follow up.

    I ended up developing gestational diabetes, so that bought me another 2 ultrasounds to check size of the baby (at 30 weeks, and 38 weeks).  Both of those scans were normal.

    I delivered a perfectly healthy baby girl on 8/9/11.  I was scared up till the end, and terrified during delivery that we would find something wrong that was missed.  I don't recommend being like that, lol.  TRY to enjoy the pregnancy - although I realize that it can be almost impossible to do. 

    I asked why this happened, and was told that some babies can take longer to develop their lymphatic system, and therefore sometimes have fluid buildup behind their neck.  This resolves on its own, typically by 18 weeks.  So yeah....all the drama & tears & months of misery for nothing.  I sincerely hope you are as lucky as we were. 

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    Thank you so much for your encouraging replies! And huge congrats on your healthy babies!

    I just read a study that a measurement of 3.5-4.4mm only carries a 20% chance of any sort of abnormality. That statistic is more manageable to me than 50%. Either way, we're moving forward and just hopeful that our anatomy scan (at 18w5d in November) and echo (at 24w4d in December) will increase our hope.

    I am just devastated at the thought that my baby could have something incompatible with life. I just can't even let my mind go there, but know I shouldn't just stick my hand in the sand either and ignore reality.

    All I can say is that this really freaking sucks. 

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