# 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 :cry:
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 :cry:. 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. :hugs:


----------



## 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. :hugs::hugs::hugs::hugs:


----------



## 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. :hugs: 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:flower: 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[-o&lt; Thanks once again:hugs:


----------



## 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 :hugs:

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


----------



## 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


----------



## clairew4

Hi. I'm back from the hospital, the amnio was ok, done quickly, it wasnt as bad as i expected, I was more worried at having the scan but it was lovely to see baby, even got a pic & my o/h got to see baby properly for the first time. I'm cramping a bit at the moment but that's nothing new, I've had tummy pain/probs during this pregnancy anyway so I'm used to a bit of pain! I will get results in 2/3 weeks time if all ok (fx) could have opted for rapid test but wanted to get fully tested for everything.


----------



## Hope39

So glad it went smoothly for you Claire, my mum had an amnio when she was pregnant with my brother and i remember how terrifying it was for her

For anyone else reading this thread because they have been given a low ratio, i am not sure if any of you are aware but Professor Nikolaides of the Fetal Medicine Centre has developed a blood test that picks up the trisomy disorders so that patients do not have to have a cvs or an amnio! Well in some instances they will still advise a CVS

They have started this today, if you go before you are 11 weeks then they will scan you to check the pregnancy is viable, take your blood, you return in two weeks for Nuchal Scan and the results of the blood test (Harmony Prenatal Test) and it costs £180.00 for both scans and blood test

If you go after you are 11 weeks then unfortunately the cost is £580.00

This test has been in America for a while but now in the UK, NHS should be using it within about 5 years

Sorry to jump on this thread but wanted to make as many people aware about it as possible

Thanks


----------



## clairew4

Hi Ladies :flower: It's been 3 weeks since having the amnio and I'm so glad the wait is over, I have finally received results via post & got the all clear also found out my little peanut is a girl! :happydance: I am due to have my 20 weeks scan next tuesday, one week to go & then I can tell the rest of my family & friends the news that I'm having a baby, kept this big secret for too long. :happydance:


----------



## drsquid

congrats. as much as it is scary to get an amnio the nice thing is you get a REAL answer. you know the baby is fine, not low risk. NORMAL =)


----------



## Lady H

Thanks for sharing. I got a risk on 1/65 today due purely to low PAPP- A and have opted for amino on 26th November.


----------



## clairew4

Lady H said:


> Thanks for sharing. I got a risk on 1/65 today due purely to low PAPP- A and have opted for amino on 26th November.

Hi LadyH, I'm really sorry you have to go through this, the procedure isn't that bad its the waiting in between that's the worse. I've noticed you're in bucks too, whereabouts? If you need to chat or ask questions, you can pm me. I wish you all the best for the 26th Nov. Take care x :hugs:


----------



## Lady H

Thanks Claire, I'm near Amersham. Was your Amnio at Stoke Mandeville? I've not heard if they are good or not, just hoping! Thanks so much for the offer xxxx


----------



## clairew4

Lady H said:


> Thanks Claire, I'm near Amersham. Was your Amnio at Stoke Mandeville? I've not heard if they are good or not, just hoping! Thanks so much for the offer xxxx

Hi, sorry late responding :(. Yes I had amnio at stoke mandeville Dr Reddy did it & she was very good. How are you? Have you had results yet? Hope everything ok. Take care xxx


----------



## Physiomom

So happy to hear about your amnio results. That's wonderful news.
I am "waiting it out". I'm 30 weeks now...will know soon!
Take care


----------



## Lady H

Claire I had Miss Reddy too. She was great. It was such an easy procedure too. I paid to get the Edwards, Downs and Patau results in 2 days and they were all clear! Yay! Still waiting on th full Karyotype.

Good luck Physiomom fx all fine for you xx


----------



## speedbump

Guys. I have been on here for zonks and never replied. I have to reply now.

The possibility that your child will have DS is horrifying. I know. I was given 1:119 odds that our son would be born with T21. Down Syndrome. I was scared to death by doctors who made it sound like a fate worse than death.

My son was born last February with T21. We were that 1. We were torn apart.

But.

There is absolutely nothing wrong with him at ten months of age aside from the fact that he has slight muscle weakness in his upper body. He is eating solids. He is babbling. He is laughing and smiling. He has few physical 'symptoms'. He was born with two small holes in his heart which have healed. He is NOT unhealthy. We did not have an amnio before he was born.

If we had an amnio before he was born we most likely would not have him. He is perfect. We were afraid. We are no longer afraid.

I cannot impress upon you enough how much it saddens me that the medical field scares the crap out of people making you think the world will end if you have a child born with this condition. 

I am not cheerleading. Our. Son. Is. Fine.

Do not be afraid. I was. My pregnancy was miserable. The experience I had during my pregnancy was the worst thing that has ever happened to me. I now hate doctors. I now adore our son.

And I am not afraid. Please do not be afraid.

Guys.

I am pro choice. If we knew our son had T21, AT THE TIME, we probably would have mad a drastic terrible decision. We did not. Thank you whatever higher power there is.

Know this. There are so so so many people who want to adopt babies with T21. Your child may have the marker and turn out like mine. If my pregnancy was terminated because of fear we would not have the greatest gift in the world. Healthy. Interactive. Curious. Clever. Only slightly behind his peers at 10 months but still well within normal range of development. Did you know this could be possible? I didn't. We didn't. Those doctors don't talk about it. Those doctors only want perfect babies.

You know what? Ours is.

Get in touch, I will tell you our story. Read my blog I will tell you our story dirtywaterpool at blogspot uk. Don't give up. Stay strong. Love your baby. Take it all as it comes. Please.

Please.


----------



## everthingX

You sound a very proud Mummy which is wonderful to hear.

I am in the same situ 1/110 - how were your scans - Did they pick up any markers? x


----------



## speedbump

Couldn't be prouder everthingX. Every day is a new joy with our son and I wouldn't trade him for the world.

Markers, yes. They seemed to thrive on telling me bad news which after enduring for nine months felt like nitpicking on every little thing and made me completely insane. 

Our odds were 1:118 age alone (39 at conception, 40 at delivery) and the bloods and nuchal fold (2.8 IIRC) put us at 1:119. I was also impaired glucose tolerant prior to getting pregnant and they kept labeling me type 2 diabetic from the get so I was treated for GD since week 14. They tried to put me on metformin after a week of trying to control by diet. I resisted and ended up going three more months without any medication.

Our 20 week anomaly scan showed 7.1 nuchal fold and echogenic focus on the heart, most common location left side. So again pressured us to do amnio. We said we would be keeping this child even if he were only able to live five minutes so no point in taking that risk. They knew pretty accurately what a small percentage of amnios resulted in the loss of the fetus but didn't seem to have any figures as to how many false positives there are, which is probably of far greater concern to folks experiencing these frightening types of pregnancies. I found that pretty relevant.

Anyway, the focus got us sent us for detailed echo at Kings College Hospital which came out entirely clear. The holes he was born with were just too small to detect, and had zero effect on his health. One was a PFO which usually closes when the baby goes through the birth canal. He was breech so we delivered by C-section which probably helped that hole remain. The cord was around his neck, so I don't attribute the position to DS. The other hole in his heart was a small VSD which closed in under 5 months. The specialist said that was very unusual it closed so quickly and we remain convinced our boy is a warrior.

The doctors gave us the news very badly, with a heavy dollop of pity. We had that echo which showed the two small holes, and then they left us like lepers to wait eight weeks for a follow up. The doctor claimed he had a 'very sick baby' down the hall so he couldn't spend more time with us. So clearly even he saw our boy is just really not exactly 'unhealthy'.

They warned us of all kinds of watch outs at his birth of which none materialized. We joined the DSA and although we may need their help down the road, we are just distant observers at the moment because we don't currently need any outside intervention.

I just cannot express strongly enough that although there is a huge range of affectation for kids born with DS, and we are truly very fortunate that he is so healthy, I wonder how many others just don't get the chance to enter the world because parents are so afraid. We feel very much as if the bulk of medical practitioners we've come across just don't view our son as a complete person and that makes me equally sick, sad and furious. He IS complete and he completes our family. 

Off my soapbox now lol. Wishing everyone here the best, whatever the outcome of your pregnancies. No fear!! x


----------



## everthingX

So feel for you hun having gone through so much worry through pregnancy, I hate the worry and you cant help it even tho we have done everything possible to protect our little ones.

I have no idea how they come to these scores as I am 37 and will be when giving birth, my 12 week scan had 1.2 NT and 18 week 3.2, so both really normal. but My bloods hcg was 2.0 and papp A 0.38 yet I had a score of 1/110. So my scans had less thickness fluid and I still have a higher score. I am younger so my bloods must be a real indicator here. The Arc helpline tell you it can just be a natural variation in your bloods at the time, but they say that to eveyrone. Its just a guessing game isnt it unless you have Amnio and I have not been brave enough for that after losing my first pregnancy. What will be will be, it has been inspiring listening to your story of how much you love your little man. I worry will I bond and all sorts but I think you just panic. How will everyone else judge you etc. but once baby is here I'm sure my attitude will be much the same, and balls to anyone who cannot accept the way things are. I've sadly just lost my mum to unexpected death and she was my main positive on this, it will be fine and if its not its your baby and you will find a way to cope. I feel like I lost a lot of support when she died but I find faith in her words, it will be OK i have a feeling - I trust my Mum!!

Your little man sounds gorgeous and its so lovely to hear of your lovely bond. What a lucky boy to have been given his Mummy and Daddy, truly blessed!!

I will be honest your story did scare me cos you try to convince yourself all is well, but I'm sure you went through all this too. Our scores were very close together, even tho we had different reasons for those scores. I am feeling very anxious about birth with everything including my Mum...Life is tough sometimes ay!!

Glad all is well with your little man now, thanks for posting x


----------



## clairew4

Lady H said:


> Claire I had Miss Reddy too. She was great. It was such an easy procedure too. I paid to get the Edwards, Downs and Patau results in 2 days and they were all clear! Yay! Still waiting on th full Karyotype.
> 
> Good luck Physiomom fx all fine for you xx

Hi LadyH. Thats great news:happydance: Fingers crossed for full results. xx


----------



## Lady H

Got full results, all normal. They also confirm it is a little girl, so happy.


----------



## Lady H

everthingX said:


> So feel for you hun having gone through so much worry through pregnancy, I hate the worry and you cant help it even tho we have done everything possible to protect our little ones.
> 
> I have no idea how they come to these scores as I am 37 and will be when giving birth, my 12 week scan had 1.2 NT and 18 week 3.2, so both really normal. but My bloods hcg was 2.0 and papp A 0.38 yet I had a score of 1/110. So my scans had less thickness fluid and I still have a higher score. I am younger so my bloods must be a real indicator here. The Arc helpline tell you it can just be a natural variation in your bloods at the time, but they say that to eveyrone. Its just a guessing game isnt it unless you have Amnio and I have not been brave enough for that after losing my first pregnancy. What will be will be, it has been inspiring listening to your story of how much you love your little man. I worry will I bond and all sorts but I think you just panic. How will everyone else judge you etc. but once baby is here I'm sure my attitude will be much the same, and balls to anyone who cannot accept the way things are. I've sadly just lost my mum to unexpected death and she was my main positive on this, it will be fine and if its not its your baby and you will find a way to cope. I feel like I lost a lot of support when she died but I find faith in her words, it will be OK i have a feeling - I trust my Mum!!
> 
> Your little man sounds gorgeous and its so lovely to hear of your lovely bond. What a lucky boy to have been given his Mummy and Daddy, truly blessed!!
> 
> I will be honest your story did scare me cos you try to convince yourself all is well, but I'm sure you went through all this too. Our scores were very close together, even tho we had different reasons for those scores. I am feeling very anxious about birth with everything including my Mum...Life is tough sometimes ay!!
> 
> Glad all is well with your little man now, thanks for posting x

It's most likely age and blood results, that's what mine were, low Papp a also. :hugs: Having gone through everything I do wonder now if I should have left it to fate. Waiting for the results is stressful but I am am a major worrier, so knowing now does give some peace but you will always still worry.

Speedbump thanks for sharing, what a lovely heart warming story, hugs to you little boy xx :hugs:


----------



## speedbump

Thanks to you both for the kind words. Everthingx I love your attitude 'balls to anyone who cannot accept the way things are'. That is the best kind of attitude for any mum and I'm sure you'll be absolutely brilliant whatever the outcome. I am so sorry you've lost your mum but her support will live on in your heart. 

Sorry too if my story scared you in any way, I did not mean it to. I'm really trying to just share how even though it is a frightening, uncertain time, on that magical birthday you will have a child who you will adore with all that you are and ever will be. He or she is part of you and you will find such joy. And at 1/110 there are still 109 chances that your child will not have DS. That is always the way I looked at it. That is the way to get over the hurdles those thoughts throw at you! I was confident the whole time our son would be fine, and even though he was born with DS, he is! It's changed my whole perspective in such a good way.

LadyH I will pass on those hugs :)

Yes, we certainly do worry ourselves into knots in pregnancy, and I hope you can find some serenity in the coming months. It's time for bubble baths, long walks even in the cold!, and pamper pamper pamper yourself. And get everyone else to pamper YOU cos after bubba comes you won't get a look in :winkwink:


----------



## clairew4

Lady H said:


> Got full results, all normal. They also confirm it is a little girl, so happy.

Hi LadyH....Yay that's fantastic news :thumbup:. Welcome to team Pink :happydance: :hugs:x


----------



## Peoples22

Hi ladies , I just got the horrible call today from the dr stating I'm at high risk and I have been a terrible mess all day.


----------



## Lady H

Hi People's, do you mind sharing your result? Was it NT or bloods or both? Xxxxx


----------



## Peoples22

It was a blood screening results came back 1/107. We just had a ultra sound last week and found out the gender and no markers were found but we are scheduled for another US now.


----------



## Lady H

Well mine was from bloods only too, nt was fine. I was 1/65 so opted for the amnio and baby was fine. I think nt is more of a concern than bloods alone. Good luck xxx


----------

