Anyone Been HighRisk For Downs But Refused Amnio??

[minnesotagal]

Hi gals,
I just joined this board. I've been googling and was SO happy to find a conversation about this. Thank you so much for sharing your stories, gals.

I just got the results of my blood test last Monday, and found out I am elevated risk for DS for my age 1:273 (normal would be 1:320 or better). My Level II U/S isn't scheduled until December, and I have been sick with worry.

I truly wish I hadn't done the blood test... it seems like guess work. I'm worried I won't enjoy my pregnancy now... I think about it every day. I know it seems unreasonable, but it is truly upsetting in a way I couldn't have predicted.

Honestly, I did the blood test because I believed it would come back low risk and would be a source of comfort.

Because I am a need-to-know gal, we thought about the Amnio, but like many of you said, the risk from Amnio is higher than my risk of having a baby with DS.

My OH and I agree we will love and care for whatever baby we get, but the not knowing... while knowing "elevated risk" is maddening.

To the other gals going through this too, hang in there! My OH is assuming all is fine - I wish I knew the secret to that approach! Any tips?

 

[Szaffi]

Your story is all too familiar... My OH was the same - we made the decision, he did the math and says that the numbers are in our favour. He concentrates on the 99%+, while I keep worrying about the less than 1% chance. My ultrasound eased the worrying somewhat, but I still have had a hard time connecting with my baby, even put off buying anything.

At around 36 wks, reality started to kick in, and we ran out and bought all the things necessary, as it doesn't matter if baby has DS or not, she will be our baby, and will need the same things as any other babies.

So now she feels more 'real' and I have become less anxious. Try to let yourself connect to the baby and enjoy this time with her, even though it is hard when you get negative news like that. Hope everything goes well on your ultrasound.

 

[farah]

I'm really glad to have found this thread. Got a call from the hospital yesterday and our risk is 1:150. I was so sure it would be fine cos I'm only 25 but now I regret having the test taken. I've been just crying all day yesterday and all morning again. I know there's still 99% chance of baby being fine but just can't help feeling terrified. Feels like the whole joy of being pregnant has been taken away from me. I feel like this is the only thing I can think about.

What did all of you do after you got the results? Did you call the midwife back to talk about it or what? My midwife just said I need to call her if we want the amnio but there's no way we're having it. My 20 week scan is still 3 weeks away and it feels like a long time to wait when I'm feeling like this. So I'm interested to know how everyone else coped? Did you just try not to think about it and try focus on other things until the anomaly scan? Did any of you ask for an earlier scan or get one?

I regret this stupid test so much!!!! I was so happy and excited before and now I just feel miserable.

 

[Jelly_Tot]

Because i refused the amnio we still got a detailed scan at 16 weeks just to check for any markers for ds so you will prob get one too xx

 

[Szaffi]

Hi farah! That was exactly my risk 1:151. I know how you feel and crying was my first reaction too. I wasn't followed by a midwifew but by a gynecologist. We had an appointment to talk to him, but he was totally unhelpful and kept pushing for an amnio, even though we said that we probably wouldn't terminate the pregnancy anyway. Afterwards, I phoned around, found another doctor for second opinion to check if the test was taken at good times etc. He had me retake the test and the second time around it came back as low risk.

In the meantime I also found a doctor who did private anomaly scans, so I booked one at wk 17 as we decided to go ahead with the amnio if he found something abnormal. It was all clear, so was the 20 wks anomaly scan arranged at the hospital. So we finally didn't do the amnio.

I remember at the time a lot of the girls in the UK said that if you book the amnio, you'll get a level II ultrasound first. So if that's clear, you can still refuse the amnio on the spot, though the hospital will probably push for it. I'd say call your midwife and ask her about this, as well as if you can see a genetic counselor who will explain the test result to you.

Good luck, and try not to get too wrapped up in negative thoughts. Think and talk with your OH on how you'll want to handle the situation. If you won't terminate, there's not much point to doing an amnio.

Also, I don't know if this is just a result of your blood test, but here in Belgium they do a 'combined' test. Give you a probability based on your age, the triple test result and the nuchal translucency measurement. In my case, sine the NT was normal, I got a 'combined risk' of 1:232 (age didn't help, as I'm 33) which is still high riskm but very much on the border. THe cut-off here is 1:250. So if your NT measurement was ok, you could consider your risk halved, which makes it around 1:300.

Try to get some good explanation and also if you're considering amnio, ask about the MC rates for the hospital.

 

[minnesotagal]

I am still waiting for my Level II ultrasound too. The waiting is not easy! I get it on December 1.

It was very upsetting when I first got the news... something I did that was helpful was I set up a separate appointment with the genetic counselor and she helped alleviate a LOT of my worries. I feel so much relief having someone to talk to, even though I don't have any confirmation either way yet.

This whole process, although horrible and scary at first, has taught me about my capacity (and my OH's capacity) to be ok with the unknown... something that I think we're gonna have to get used to as parents. But, I did cry for a week.

Hope it's getting better for you!

 

[doddy0402]

i was sent for my quad test at 15 weeksconfirmed gestational age by ultrasound. at the lab the tech used my LMP date which I advised her not to use cause it would put me at 21.6 weeks when was actually 15. i have very irregular periods due to polycystic ovaries anyway the test came back positive for downs. My doc is being an ass about it. I was told that it came back positive because of the wrong gestational age. i did 2 anomally scans at 20weeks by different specialist but they both came back normal. What do you ladies think? i live in the caribbean and we donot have expertise like the states, united kingdom or Canada. ladies please let me know what you all think. thanksI am so worried I am now 33 weeks

Hi just wanted to say that I had the triple test done with my boy when they were saying that I was 16 weeks, but my dating scan had said 13.5weeks, so they used the wrong dates on mine and I got a 1/85 chance of dyl having ds. I was going to have an amnio as I was 20 and scared, and needed to know what the future held, but when they did the ultrasound to check the baby was in the right place to not get in the way of the needle, they noticed that he was small for the dates on my notes, they decided to wait 2 weeks and repeat the triple test which eventually came out at 1/2700. so it does make a HUGE difference whether they have your dates wrong!! please dont worry too much!!x

 

[Szaffi]

Just popping in to let you know that we had our baby this Wednesday. She came out all perfect and healthy, no sign of DS. Now in retrospective, all that worrying was for nothing and I am very happy we didn't risk the amnio.

Good luck to all of you!

 

[Mazmos]

Just popping in to let you know that we had our baby this Wednesday. She came out all perfect and healthy, no sign of DS. Now in retrospective, all that worrying was for nothing and I am very happy we didn't risk the amnio.

Good luck to all of you!

Yiiipppeeee Congratulations on your new arrival Hun. I am so pleased for you, and your family.
I know what you mean about the test causing worry for nothing. We too were given a high risk - 1:120, and had a very detailed ultrasound scan - they scanned the heart in extreme detail, as well as the brain, bowels, stomach, kidneys - all of which can show signs of DS - all was perfect and the consultant even commented on what a good scan we had. It really put my mind at rest, and got me back to enjoying every minute of my pregnancy - the way it should be.
They did say a scan pick up EVERYTHING, but at least I know all looks perfect. Only jusyt under 17 weeks until we meet our little Bubs

Maz xxx

 

[blackthickpea]

hi girls I had my son on the 29th November. I was induced using a pill called cytotec (spelling). he weighed 7 1/2 pounds. There are so far no signs of DS remember I had gotten a positive for DS. He was born with a little heart murmur. he is being monitored by the pediatrician but so far he has not been diagnosed with any heart condition. I pray that hye will continue to do well. I know i worried alot about the positive result i got for DS. I would not have made it without you wonderful ladies on here. Thank you very much I will try to put up a pic later I will also continue to pop in here from time to time.

 

[bek74]

My OB has given me the referral to have the scan done, I can't have bloods done as I am carrying twins, so they can't tell which one is which.

I spoke in length to the scan place and they can't tell you if your baby does or doesn't have DS it can only calculate the risk factor based on the amount of fluid behind the neck and the mothers age, how active you are, if you smoke etc etc.

To be honest I don't think much of the test at all, I would have been in a high risk in my 20's when I smoked, didn't eat well etc etc and all my boys are fine.

I will probably be put in high risk now because of my age (36 at scan date) and ex-smoker. I think it is just another thing for us to worry about.

My hubby says get the scan cause it is 3D and he wants to see it, but as for the risk factor I am really not going to pay that much attention to it.

They get FALSE (wrong) results on average every 2 out of 10, so that is disgusting, that is really bad. Not one wrong in every hundred or thousand but 2 in 10. So personally if you REALLY are concerned and you really want to get an accurate result get the amnio test.

This is JMO..

Good luck ladies

 

[Szaffi]

hi girls I had my son on the 29th November. I was induced using a pill called cytotec (spelling). he weighed 7 1/2 pounds. There are so far no signs of DS remember I had gotten a positive for DS. He was born with a little heart murmur. he is being monitored by the pediatrician but so far he has not been diagnosed with any heart condition. I pray that hye will continue to do well. I know i worried alot about the positive result i got for DS. I would not have made it without you wonderful ladies on here. Thank you very much I will try to put up a pic later I will also continue to pop in here from time to time.

Congrats! This is great news

 

[Deb_baby]

I had a 1 in 147 chance with megan, and the fluid behind her neck was over 7mm instead of the normal/average, I think it's 2.4 mm. Refused the amnio as I had already miscarried last year, from then I was put on consultant care and all she did was talk about having an abortion! Got another scan which showed the fluid had went down and there was a nose bone the too. I had 9scans throughout my pregnancy with doc checking for DS, then it was Edwards syndrome and finally a heart problem. I gave birth to a healthy baby with no problems

 

[myasmumma]

my friend was put at high risk for downs and believe me she cried for days! but there is nothing wrong with lily at all she is a healthy and happy 2 year old i wish you all the best

 

[linzi74]

Hello
I was a 1 in 149 risk of down syndrome and my baby did not have it. We decided not to do the amnio as we didn't want to risk a miscarriage and thought what will be will be. In the end I has severe pre-eclampsia and my baby suffered deprivation of oxygen at birth and is severely disabled but he is my beautiful angel boy and I love him very very much. What I am trying to say is if you think you don't care too much about whether your baby will have down syndrome or not then you don't need to do the amnio, just enjoy your pregnancy. If on the other hand you think that you could not have a baby with Down Syndrome then take the amnio.

 

[louise85]

Hello everyone

I was given a 1:89 risk based on the nuchal measurement alone (I'm 24, there was a present nasal bone and no other problems they could see) I decided to have bloods done for the combined result which came back at 1:270, I then had a letter saying I am now classed as low eisk and no further testing is recommended.

However I'm still undecided about amnio, I have a 16week scan next week so hopefully they'll be able to see more then, does anyone know what happens at this scan??

 

[rachelrhin0]

We didn't have any blood work done in my 1st pregnancy to test for downs. When I had my 18 week u/s I have EVERY.SINGLE soft marker there was for downs. I refused the amnio at that time in fear of causing me to miscarry our daughter. I continued until I was 26 weeks when even more problems were found. By that time we did do the amnio just so my doctor would now how to proceed with my pregnancy.

ETA: our daughter did NOT have Downs.

 

[crossroads]

Congrats on your pregnancy. My baby was high-risk for birth defects (not Down's) because of a medication I had taken before I realized that I was pregnant

Hi. What medication was that? x

 

[midori1999]

Sorry, I am not sure if I am a bit late in replying to this thread.

I am on my fourth pregnancy, carrying twins, and have refused any testing other than scanning, including the automatically offerred anmio as I already have a child with Downs.

My third son has Downs (first two are perfectly 'normal') and I had the triple test with him at 16 weeks and it came back low risk. I was 27. I am SO glad I didn't find out as I would have thought all sorts of things, like having a baby with Downs wouldn't be fair to my other children for example, and I am not sure what I would have done. (it was an unplanned and unwanted pregnancy anyway, without knowing about the Downs) In actual fact, having a baby with Downs really isn't that much different to having a baby without Downs. My son is now almost 6 and an absolute delight.

Although my son has trisomy 21, which is completely random, it does mean I am at slightly higher risk of having a baby with Downs this time, hence the offer of an amnio. My husband is not the father of my other three children, they are from my first marriage, but agrees he would be just a happy if our baby/babies had Downs as if they didn't. It's really not such a big deal.

 

[khegidio]

My genetic screening results came back as a 1 n 47 chance for Downs, and a 1 > 10,000 chance for Trisomy 13 or 18. We have decided to get the amnio test - in fact our appointment is this coming Friday. We are nervous but trust in our doctors who tell us the risk rate for miscarriage is 1 in 500 (now vs. the 1 in 200 statistic that was from years ago).

My husband and I just feel like it is very important for us to know in order to be able to prepare for caring for a special needs child.

We are confident all will go smoothly.