Nuchal blood test 1 in 70 chance of downs :(

[clairew4]

Hi. I am 35 years old, 13 weeks 4 days pregnant. I didn't think I'd make it this far as have been through the mill with this pregnancy, what with constant stomach cramps, bleeding due to subchronic bleed etc. I had my nuchal scan & blood taken on monday. Baby's neck measured 1.9mm, told baby looked good and subchronic bleed had gone, I thought everything was ok and I could start to relax and enjoy this pregnancy....Until this afternoon, I received phone call from hospital to tell me I had 1 in 70 chance of my baby having ds
I decided to have the amniocentesis when I'm 16 weeks as I don't think I could cope with the worrying of not knowing for certain, I'd rather know early if bad news but then what if the baby is perfectly healthy and I'm the 1% that miscarries . It's such a hard decision to make, I feel so confused and scared. Sorry for the rambling.

 

[sue2012]

Awww so sorry your going tbrough this hun i really havnt got any advise but just wanted to send you tons of hugs xx

 

[lilmills]

I have just gone through this and got a good result but I had my amnio which I was dreading and it was not as stressful as I was expecting. From what I have read which i did a lot of I found out that if the neck measurement comes up small which 1.9 is then it is better than it coming back high. My babys neck was 3.1 and everything was fine. I had a 1 in 65 chance and was distraught but as I say the amnio wasn't traumatic at all. I had it on Monday and got the results wednesday morning. The doctors who perform the amnios are skilled and good at what they do.

My dh's cousin also had an amnio last week as she got a 1 in 50 chance and the baby is fine and the results came back as a 'normal' baby, hate this phrase but cant think of a better one. It is an awful time and unlike you this baby was very unexpected for me and before this happened I was very worried about having another baby but since this happened I thank God everyday that my little bean is fine and yours will be too, my only advice would be take every decision as they come and dont think of the what ifs it will drive you crazy.

 

[destynibaby]

Will having the amnio make you want to change your mind if the LO does have DS? If your decision is not to terminate either way, I wouldnt do it.
especially not that early.
You can still have quad screening done at around 16 weeks. I would wait until i get those results before deciding on an amnio. and if still not satisfied... i personally would wait until 24 weeks when baby is viable because after all your baby could be 100% fine.

 

[Marie131]

Late amnio is an option if you would not terminate and are worried about m/c. My quad results came back 1:30 for T21. We were considering amnio around 30-32 weeks since I have other complications and am delivering early anyways. In the end we decided to wait and do chromosome testing after delivery if necessary (it's a simple blood test).

 

[drsquid]

i had an amnio today.. no biggie. baby a was completely painless.. b was quite painful but that was likely cause they went in so high (2 cm above my navel), but the second they took the needle out it stopped hurting.

 

[Happy2BeMommy]

Hugs to you all.....I have a 1/85 risk myself, but I'm not doing CVS or the amnio....I'm waiting for the 18 week level 2 ultrasound. I just couldn't terminate but I am also very worried. My first pregnancy was also high risk, but for totally different reasons. I do hope we can all stay in touch & keep each other in our thoughts!

 

[PoodleMommy]

When I was pregnant this time last year, mine came back at a 1/88 chance of Down syndrome. Because of my age (40) and that result, I kept getting pressured to do amnio, but I refused because I didn't want to risk it causing pre-term labor and a subsequent miscarriage.

My baby was born perfectly healthy, no Down syndrome or any other trisomy (he was just born early because of my pre-eclampsia).

I am actually 16 weeks pregnant again (a wonderful "oops!"), and just three months ago, a new blood test has hit the market called the Harmony test. Not sure if it's available in the U.K. yet, but unlike the triple and quad screen, it will tell you with 99% accuracy whether your baby has T21, T13, or T18... so, the accuracy of amnio, without the risk!

I took that test instead of the triple screen, and got the result a week and a half later than my baby does not have T21, T13, or T18. Sooo much better than getting a worrying odds ratio and fretting the entire pg that your baby may have T21. You may want to ask if the Harmony test is an option rather than amnio. The down side is that you can't do the Harmony test if you're expecting multiples or if you used donor egg.

 

[PoodleMommy]

One other thing; I was told that the thickness of the NT as well as whether a nose bone was seen are both far better predictors of Down syndrome than the blood test results. Your NT thickness was perfect... so no matter what you decide re: amnio etc., it would be good for your emotional sanity to cling to that in the weeks ahead, knowing that your baby is likely fine!

 

[Stressbucket]

Big hugs. Been through this, and it's scary.

 

[MrsClark]

I had a quad screen come back with a 1:25 for downs. I did not have the cvs or the amnio. I had two very detailed level 2 ultrasounds and neither ultrasound showed any markers for downs. Since I did decline the amnio I will not know for sure until I have the baby. Its your personal choice on whether you have the test done or not. I hope everything goes good for you. I know how devastating this news is.

 

[chattyB]

I had an amnio after my NT scan and bloods came back with a 1:11 chance of DS. This was largely based on a 3.5mm nuchal fluid reading and my age (35). I was very unsure about the amnio as ultimately it would not have changed my decision to continue with the pregnancy but I felt I needed to know for sure so that a) I could plan for additional assistance at delivery (I'd planned a home birth but a DS diagnosis would have dictated a hospital birth) and b) it would enable me to prepare my older children that the new baby would have DS.

The amnio itself was relatively painless - the blood test afterwards was more uncomfortable. My FISH results came through within 2 days telling me that baby had "apparently normal chromosomes".

The 5 week wait between the NT scan and the amnio were incredibly stressful - I think I cried a whole lifetime of tears in that time. I know exactly how you are feeling right now.

 

[everthingX]

Hi hun, I'm in the same situ. i had 1/110 chance and was terrified. I refused Amnio only because I lost my first pregnancy and for my own reasons was scared to take the risk. In some way I wish I had been brave and ttaken it so the worry would go away. I am 37, my NT scan at 12 weeks was also perfect 1.2 but my blood and age took me over. I had high HCG and low Papp which is a sign but can also mean anything.

I held out until my 18.5wk scan and had someone higher up carry it out. they checked baby over and over and again found no markers. I know they can't clear me but it gave me come peace of mind to continue without Amnio. We had a plan that is something was found on later scan I would do the Amnio just so we knew as I couldn't face termination.

All I can say is as time has gone on for some reason the news seems easier to take and you get yr head around it more. Don't get me wrong when I go into labour I'm sure I will worry for my baby but I try to keep it in perspective all my scans have been good and the test can be wrong.

I respect you for doing what is right for you, some people have to know and that does not make yr decision wrong. I wish maybe I had so could enjoy my pregnancy and birth but with the risk I couldn't do it and having already lost I felt I had no control over my first pregnancy but I do this one and I chose to protect my little one. I've had family be mean putting pressure on saying am I being fair, but end of day this is yr baby do what is right for you.

I wish you all the best hun, keep us posted and if you need a chat PM anytime. Hugs xxxx

 

[drsquid]

chatty- that is one of the reasons i canceled my nt scan and bloodwork. im 39. there was no way i wasnt doing an amnio. i didnt want to spend time stressing over high or low risk. but ill mention again https://www.sequenomcmm.com/home/health-care-professionals/trisomy-21/about-the-test/ your insurance may not cover it but... it might give you some peace of mind (or a more clear answer yes or no).

 

[clairew4]

Hi Ladies Thank you so much for all of your replies, very much appreciated. My amniocentesis is booked for monday 15th October, after a week or so of thinking & non stop crying I've come to terms that it's the right thing for me to do & I need to know as soon as possible, I couldn't wait another few more weeks. If only the new harmony test was available here in the uk, I would take that like a shot. I'll let you all know the outcome, hopefully the next week will fly by Thanks once again

 

[everthingX]

I searched for it too in UK but nothing not even private. I even asked my nhs screening lady are they doing trials I can join but nothing!! It has been on the news but will now be available here until another 3 years or so.

Good Luck on Monday hun, I'm sure all will go well lots of ladies on here have had the test and said it was not as bad as they thought it would be. Will be thinking of you and sending lots of hugs. Keep us updated xx

 

[everthingX]

Any news on your results Claire - how did you find the test? Hope all is well x

 

[drsquid]

claire - hope it went well.. got my final results back and all clear. so much better than worrying

 

[clairew4]

Hi Ladies, I'm having amnio tomorrow I will let you know how it goes, getting nervous now. I just hope everything is fine in the end, especially as recently I have felt baby move & had the chance on Friday to hear his/her heartbeat. Thanks for your support

drsquid, I am so pleased that you got the all clear, great news

 

[drsquid]

claire- honestly i didnt think it hurt at all (well atleast baby a, baby b hurt but that was cause it was way high up in the muscle). i had zero symptoms after. in fact i went on a tour of a new building at work and walked around for 2 hrs. no cramps no nothing. and despite thinking id be totally hung up on the results (and i paid extra for the 2 day cause my mom was bugging me) i honestly actually nearly forgot about it (weird cause that isnt really me). they managed to do my full anatomy scan that day too so i got to cancel the other appt and kill 2 birds with one stone. good luck tomorrow and dont worry too much