NT Scan for Down Syndrome

AnnaInman · October 2014

My husband and had to go to a high risk doctor yesterday because I had a marker for cystic fibrosis. If my husband has a marker baby has a 20% chance of getting it. So they tested his blood. Have to wait 7-10 days for results. So go in to get sonogram and the doctor finds thick fluid on the back of the babies neck which could be downs or trisomy 13 or 18 or Turner syndrome if a girl. She then tells me that baby has a 20-30% chance of being normal. This is all from a sonogram. Im super scared! They also took blood from me to test for these things. Anyone else have this happen and if so what were the results?

fro88 · October 2014

I haven't had this happen, but I do understand how scary it must be! Sending you good thoughts! Keep us all posted as you receive back results.

AnnaInman · October 2014

Thank you so much!❤️

Hummingbirdbaby3 · October 2014

I'm so sorry you're going through this. Try to stay positive and remember that you are a strong mama. I'll keep you in my prayers. Keep us posted.

littlewest1 · October 2014

I am so sorry you are going through this.

AnnaInman · October 2014

Thank you all! It's very stressful but I'm am trying to keep my mind off of it. I am staying strong and praying for good results.

pnutg · October 2014

Praying for good news for you guys!

KellyA724 · October 2014

No advice here, but tons of sympathy. Keeping my fingers crossed for good blood work results for you!

pepperjack76 · October 2014

Prayers for you and your family! I do not have experience with this but just wanted to let you know I will pray for good results! Hang in there.

starshollow · October 2014

Do you know what your measurement was? I had my NT scan yesterday and the fluid was high at 3.4. But I heard from the genetic counselor that nine out of 10 babies in that range turned out to not have any problems.

Can you get a cell free DNA test now because you are higher-risk? You can definitively rule out all of those genetic disorders. Even though my fluid level was high I already know that I'm negative for all of those based on my testing.

EmmaSF · October 2014

Wait until you speak to a genetic counselor and get final results. Try not to panic.

mrstambourinegirl · October 2014

I have no experience with this, but I can imagine how bad you must feel! I'm sorry you have to go through it

Sending you all the good vibes!

AnnaInman · October 2014

Foozle: She did not tell me the cm of the fluid. Which I think she should have. She did take my blood and is testing for those markers. They said they would call me and then I don't go back until next month.

Flowerstar1023 · October 2014

Sending positive vibes your way. Hopefully this is just an unnecessary scare. Hang in there.

MelP4 · October 2014

I hope everything will be ok! I would have a hard time not being anxious too. I hope you are able to have some peace, as hard as that is

starshollow · October 2014

AnnaInman said:
Foozle: She did not tell me the cm of the fluid. Which I think she should have. She did take my blood and is testing for those markers. They said they would call me and then I don't go back until next month.

Are you getting the standard NT scan bloodwork or a test like harmony, panorama, etc? If you aren't, talk to your doc and see if you can since you are higher risk.

AnnaInman · October 2014

foozzle said:

AnnaInman said:
Foozle: She did not tell me the cm of the fluid. Which I think she should have. She did take my blood and is testing for those markers. They said they would call me and then I don't go back until next month.
Are you getting the standard NT scan bloodwork or a test like harmony, panorama, etc? If you aren't, talk to your doc and see if you can since you are higher risk.

I'm not quite sure which one they are doing. This was the high risk doctor, I really feel like I should know more. I really not fond of her. She did say from there we would go to Amnio or CVC.

Ginger909 · October 2014

GOD BLESS

AnnaInman · October 2014

Megdowntheshore said:
This happened to me last year. The NT measurement was very high, over 5.5 mm. We followed up with panorama blood work which revealed that she did have Trisomy 21. Further scans revealed significant heart defects and we wound up losing her at 16 weeks. I'm not trying to scare you but I remember very clearly being in your shoes. Everyone kept telling me that they were sure that things would be okay, and I wanted to be realistic and start coming to terms with the possibility of a serious problem. I really, truly hope that your testing comes back negative for problems. NT scans do result in a lot of scares that turn out perfectly okay. Lots of hugs.

That is so devastating. I'm so sorry. This is what we're also preparing ourselves for. You never know. Was this your 1st baby? I'm 33 and this is my first.

starshollow · October 2014

AnnaInman said:

Foozle: She did not tell me the cm of the fluid. Which I think she should have. She did take my blood and is testing for those markers. They said they would call me and then I don't go back until next month.
Are you getting the standard NT scan bloodwork or a test like harmony, panorama, etc? If you aren't, talk to your doc and see if you can since you are higher risk.
I'm not quite sure which one they are doing. This was the high risk doctor, I really feel like I should know more. I really not fond of her. She did say from there we would go to Amnio or CVC.

Can you call either her or your regular doc and ask more questions?

I am sorry you are going through this. The uncertainty is the worst part. I hope everything turns out ok.

Duffgurl · October 2014

I just want to say sending my T&Ps. ::Hugs::

AnnaInman · October 2014

foozzle said:

AnnaInman said:

foozzle said:

AnnaInman said:
Foozle: She did not tell me the cm of the fluid. Which I think she should have. She did take my blood and is testing for those markers. They said they would call me and then I don't go back until next month.
Are you getting the standard NT scan bloodwork or a test like harmony, panorama, etc? If you aren't, talk to your doc and see if you can since you are higher risk.
I'm not quite sure which one they are doing. This was the high risk doctor, I really feel like I should know more. I really not fond of her. She did say from there we would go to Amnio or CVC.

Can you call either her or your regular doc and ask more questions?

I am sorry you are going through this. The uncertainty is the worst part. I hope everything turns out ok.

I did leave a message with my regular OB today. Hopefully they will call me tomorrow. If not I will call the high risk doctor back and ask. I was also in shock and could think of anything to ask. I guess I also didn't know what to ask until I looked online and saw what others were saying.

taahira · October 2014

Sending you hugs. I'm so sorry your going through this. I can't imagine how stressful it must be. Please keep us posted.

SMFB · October 2014

Hugs. Will be thinking of you and wishing you all the best

AnnaInman · October 2014

taahira said:
Sending you hugs. I'm so sorry your going through this. I can't imagine how stressful it must be. Please keep us posted.

Thank you and I definitely will keep you all updated.

AnnaInman · October 2014

taahira said:
Sending you hugs. I'm so sorry your going through this. I can't imagine how stressful it must be. Please keep us posted.

Thank you and I definitely will keep you all updated.

fitfam20 · October 2014

I don't have any experience but I wanted to let you know I'm keeping you in my prayers.

IndigoGrace · October 2014

T&Ps to you and your husband! I'm sorry you're going through such a hard time.

I'm 12ish weeks and my doctor did the VERIFI screening on me today - I will know in about 9 days if the baby has any chromosome issues. Further more it will identify if I any markers for other genetic issues - If I do then they will do a test on my husband.

These are simple blood tests with over 98% accuracy, I was assured by 3 different medical professionals that it is more accurate than the scans. Perhaps you're doctor could order one for you?

AnnaInman · October 2014

IndigoGrace said:
T&Ps to you and your husband! I'm sorry you're going through such a hard time.

I'm 12ish weeks and my doctor did the VERIFI screening on me today - I will know in about 9 days if the baby has any chromosome issues. Further more it will identify if I any markers for other genetic issues - If I do then they will do a test on my husband.

These are simple blood tests with over 98% accuracy, I was assured by 3 different medical professionals that it is more accurate than the scans. Perhaps you're doctor could order one for you?

Is that with blood?

IndigoGrace · October 2014

Yep. They drew 4 viles. They actually had stock if the kit in office so it was really convenient that I didn't need to schedule an alternative appointment or go someplace else.

They can be expensive without insurance, like $1k but if you have ins and especially if you are high risk the out of pocket expense ranges from $200 - $450.

keifekm · October 2014

Hugs to you. I sure hope everything ends up ok.

AnnaInman · October 2014

Thanks. It was devastating. It was my 6th loss; I don't have any little ones yet. Waiting was the hardest part. It happened around Thanksgiving so with the holiday weekend it took three weeks to find out the results of the blood work. I hope your's comes back sooner. If you can find out what exactly the measurement was, this chart was helpful.

https://fetalanomaly.screening.nhs.uk/getdata.php?id=11626

My SIL had an abnormally high NT measurement and everything was just fine; her baby is perfect. I just could tell from research that my baby's measurement was very high and thus very likely to be an indicator of a real problem.
I am so sorry. I can't even imagine going through what all you have went through. Sending you big hugs.

AnnaInman · October 2014

IndigoGrace said:
Yep. They drew 4 viles. They actually had stock if the kit in office so it was really convenient that I didn't need to schedule an alternative appointment or go someplace else.

They can be expensive without insurance, like $1k but if you have ins and especially if you are high risk the out of pocket expense ranges from $200 - $450.

I for sure want to do that. I go see my regular OB next wend. I will ask her. Did a high risk doctor do that or your reg. OB?
Thank you so much for the info.

IndigoGrace · October 2014

My reg OB ordered it for me since I have Hashimotos and actually had a total thyroidectomy earlier this year.bI am not what he would consider "High enough Risk" to where he would refer me to a different specialist, but he does feel it is important to monitor me a little bit closer due to my condition.

I would call your OB tomorrow - they may be able to get you in sooner for the test and cut down your wait time.

FX!!

AnnaInman · October 2014

IndigoGrace said:
My reg OB ordered it for me since I have Hashimotos and actually had a total thyroidectomy earlier this year.bI am not what he would consider "High enough Risk" to where he would refer me to a different specialist, but he does feel it is important to monitor me a little bit closer due to my condition.

I would call your OB tomorrow - they may be able to get you in sooner for the test and cut down your wait time.

FX!!

Thank you so much!!

fartsandcrafts · October 2014

So sorry that you're going through this. I also tested positive as a carrier for cystic fibrosis (days after being told all my tests were negative) and had to sweat it out while they tested my husband. It turns out he's negative and I'm really hoping the same for you. I also had a rough NT scan, where they were unable to take the measurement, but found other not so good surprises. I hate that you're having to deal with all the uncertainty but you can always pursue an amnio for more definite results if you feel the risks are worth it.
These decisions are a struggle.

Keep your head up! I'll be thinking positive thoughts for you!

IndigoGrace · October 2014

You got it! I really really hope everything turns out well for you! Think positive thoughts and be kind to yourself while you ride this one out.

fartsandcrafts · October 2014

As some previous posters mentioned, definitely request a blood test. They took a small amount blood at my NT scan, which was said to be 85% accurate by my genetics doctor, compared to the NT scan which he said was 90%. It's definitely worth having this done as there are no additional risks (unlike an amnio).

Wishing you the best!