# 1 in 64 chance of downs! What to do now?



## lilmills

Hi everyone, 
so i was in bed this morning at 10:00, taking advantage of time off university and the hospital rang. They got the results of my downs syndrome blood test and she explained that I had a 1/64 chance of having a child with ds! As I had just woke up these statistics didn't mean much but she asked me and my partner to go in tomorrow to discuss options! 

I am so scared and sad! I have a healthy dd who is two and I don't know what to do now! I rang dh and he said not to worry we would go tomorrow and everything will be sorted! He's in denial i think! I went to my mom's because I needed a hug and she insists that she is coming with us tomorrow so she can help, she has a cousin who has ds.

I am at uni at the moment studying learning disability nursing and the sights i see there of adults with ds who have developed early onset dementia is haunting! And then there's other defects that ds children have! 

my dh's cousin had an amniocentesis two weeks ago and suffered a miscarriage which is my biggest fear and I dont know if i could terminate a pregnancy anyway! 1/64 is a really big chance though isn't it! I am only 23 so my age wouldn't even be a factor! I'm so scared! The mw on the phone told me to ask for a name which i've forgotten so tomorrow may be like a goose chase I dont wanna go and now i wish I hadn't had that test!


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## flashy09

Have you just had one blood test and the nuchal fold measurement? I would get a second trimester blood test so you can have the "quad screen" and see if your chances change.


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## Liesje

If it were me, I would get an amino. (I know a lot of people disagree with me, and that's fine, there doesn't need to be a discussions about it) but I don't know if I could go through with a pregnancy like that. I'm not one of those strong people that can make the best of those types of things. A close friend of mine is a teacher who works with kids with DS and we've both discussed that that's not something we could do.


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## Marie131

False positives are very common and a 1:63 risk and is not a very big chance at all (only 1.5% liklihood). Odds are, your baby falls into the 98.5% of perfectly healthy babies.

My quad test results came back 1:30, were bumped up to 1:15 due to 2 soft markers found on u/s then were reduced back to 1:30 as the soft marker resolved. I can understand your worry, I'm at risk too.

Amnio is a personal choice, one we opted against as it isn't worth the risk for us and we are personally fine w/ having a DS baby (I've worked w/ many DS adults in my former career so I know exactly what we would be dealing with). You are still early enough that they may offer you CVS testing, I believe amnio is usually offered after about 16 weeks but I could be wrong. Keep in mind, if termination is not something you would do, you can have a late amnio in the third trimester where the risks to the baby are reduced.

:hugs: Big hugs to you while you go through this.


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## Gina91

I chose not to have that test. It causes what I think is unnecessary worry. There's a bigger chance that your baby will be totally healthy than baby having ds. I've also seen on here women with higher chance than yours and their baby has been totally fine! 

The amnio test is 100percent your choice. You need to think about what you would do if (in the small chance) baby does have ds. Like you say, you don't think you'd be able to terminate anyway so is it worth that (also very small) chance of miscarriage. That was another of my reasons to not have the test at all, I will love this LO just as much if she has ds. 

Anyway, I'm sure everything will be just fine. Doctors/midwifes like to let you think the worst then its more of a relief when everything is fine :) 
Good luck!


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## lilmills

Thank you for all your support and I have to say things ate clearer now and my meeting tomorrow now will allow me to ask questions so I'm glad it wasn't today because I was a mess! I think I will opt for the amino bc I want to be as clued up as I can and if this lo does have ds then it will be another decision for me and dh to sit and talk about! I just think I'm not going to think that far ahead bc it will drive me crazy! 
I know people in my family will think I'm crazy having the amnio but there are reasons why:
I have to think of my dd who would end up looking after a ds child after I die (long term thinking)
I need to be sure my relationship could take it bc I'm not sure dh could take it he's not as strong as me!

These are all selfish but real reasons I have to think about but they are trivial but I need to think about them I wish I could be as strong as you's but I'm not and I am trying to think of what life would be like!


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## Gina91

Don't feel like you're being selfish. You and OH need to be certain that you would be strong enough to cope in that situation otherwise it will be unhappy and unhealthy for all of you! 

But like I said, I'm sure everything is gonna be fine. Got my fingers crossed for you anyway :)


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## Marie131

:hugs: Your reasons for amnio are your own, there is nothing selfish about them. It is your decision to make and yours alone, don't feel you need to justify yourself to anyone (your family or on here). It is a highly personal choice, one which most people can't understand if they haven't faced a similar situation. 

Let us know how it goes tomorrow.


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## Aries28

I had a 1/17 chance of downs syndrome two weeks ago based on our quad blood screening. I was so overwhelmed by the news so I know how you must be feeling. My DH and I decided to have the amnio, but it wasnt an easy decision. We figured that we needed to know either way so, if needed, we could prepare for a special needs child. We received our results last week and fortunately they came back normal. If you do not feel comfortable with the amnio, there is a new test called the Maternit21which is a blood test and supposed to be 99% accurate. Not sure if they offer that at your Dr. Good luck to you!


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## paigeypoo

if the amnio doesnt feel right dont do it. i honestly think this test is a little rediculous since it scares the piss out of women and then they have a 'normal baby' 
wait it out for the follow up scan and blood tests, those results will be combined with the first nuchal results and will give you a better odds number. given the odds are not a yes or no, its a maybe and maybe isnt solid. i had a 1:9 ratio with my last pg and never made it to the second tests due to other complications. this pg my resluts were 1:205 the first tests and baby showed zero markers of ds, only my blood test did. combined with the second test my odd went way down and out of the scare zone, again baby showed no signs of ds. i have a scan in 2 days to look again and am hoping results are good. 
i wish you all the best in deciding weather to have amnio or go on with the pg with just maybe's.


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## chattyB

:hugs: I know what you're going through - we had a 1:11 chance of baby having DS at 12 weeks. We opted for an amnio (not an easy decision). Remember that the screening tests cast a very wide net and the vast majority of babies do not have DS. 

Thinking of you x


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## lilmills

I went to the hospital today and met with the mw! She offered me an amnio or a cvs we opted for an amnio she has booked me in for the 17/09 so asap! i think the 0.5% chance of miscarriage is quite low and it will give me a definite answer! Thanks for the support.


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## PurpleHaze

I hope your test goes well, and you get a normal result. Good luck with it! xx


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