High risk screen positive of 1:25 for downs

[kh0609]

I found out last week after having the combined test done that i have a 1 in 25 chance of having a baby with downs. Its my 3rd child i'm 32 and my dating scan showed the fluid behind the babies neck was normal (1.7).

I have to wait until next week when im 16 weeks before i can have an anmio. I'm hating the wait and feeling worse each day and don't know how i will cope until i know the outcome. I would like to think i will continue with the pregnancy but i dont know how i'll feel if i get told my baby has downs.

Has anybody else been through this, im finding it very destressing and wish i'd never had the test done.

any advice would be gratefully appreciated xx

thanks i thought it was just me being over sensitive, people who havn't been through it and doesn't have anything comforting to say should keep there opinions to themselves, i came on hear to connect with people in similar situations not to connect with people who's aim is to make you feel worse than you already do.

Thanks again'lovebeingabletonamechange'

kh0609 - I couldn't agree with your post more. This is meant to be a place for support and kindness and everyone to share and help each other. Perhaps if people were all taught at an early age 'if they don't have anything nice to say then don't say anything at all', the world would be a much nicer place.

Thank you for your kind words, baby w is happily kicking me in the ribs as I type.....very intrigued to know what he or she looks like :). As for the heat, so far it's not been too bad thanks and certainly much better now I've finished work. Must get on with packing hospital bags :)

Wishing you the very very best for your appointment. I can only suggest trying to keep yourself as busy as possible but I know that's easier said than done!!

Hugs xx

i'll keep you all posted on how i get on, im keeping everything crossed xx

kh0609 - I'm very sorry you are going through this and do use the antenatal section of MN as this is where you can get advice from people who have been through the same awful decision making process. And you wont find narrowminded judgement there from anyone who clearly has their own issues and doesn't actually have a clue what this horrible journey involves emotionally. As others have said the odds might sound bad but there is still more chance that things will be ok than not. The nuchal measurement is good too so it seems your high risk must have come from bloods which as I understand it, is more reassuring than the other way around. Take every step at a time, good luck with the amnio and keep us updated.

For the record babyonbord - most women who terminate for medical reasons do not do so because their baby doesn't fit their idea of 'normal'. From your unhelpful post it is glaringly clear that you simply do not have the emotional maturity to understand this.

I don't think there is a woman alive who if she had the news confirmed that she was carrying a DS baby would think 'oh that's absolutely fine, it doesn't make any difference to me either way'. It's normal to want your baby to be 'normal', and it is a huge shock when you find out that might not be the case. That doesn't mean the baby is unwanted or that the mother won't love and accept the baby in time, but it is definitely not the news you want to hear and anyone who doesn't understand that is the one who is not normal.

For most people raising a DS child is more challenging than a child without learning difficulties etc. so it is completely reasonable to be worried, although I think as a society we sometimes exaggerate the problem and most DS children are a joy and grow up to live very fulfilling and healthy lives.

kh0609, again I want to say how sorry I am that you have this terrible wait ahead of you. Just try to stay positive and focus on the fact that it is highly unlikely that there is anything wrong. These tests are not diagnostic and often give false positives. xx

thanks ringeir and cherrybug its nice to know the majority of people are like you and not babyonboard, every time i read her 2 messages i get upset and angry. the first message i ignored but felt her second message could not go unnoticed. if she had gone through this situation herself her argument may have some substance.

i dont think she deserves anymore acknowledgement.

babyonboard : i find your comments quite ignorant, short-sighted, and lacking in empathy. In a previous pregnancy I had opted not to have screening tests (for all the reasons you speak of about loving the child no matter what etc). unfortunately the nuchal measurement was so large (over 5mm) that is was the sonographers duty of care to inform us of the massively elevated risk, before even having the blood test (which followed). well, events snowballed from there and a CVS ended up revealing that our baby girl had Down's. Everything inside me wanted to protect that baby and to do best for her. What was best for her, we decided, was that we wanted to spare her of a difficult and cruel life, of endless operations to fix her heart, of watching her brothers and sisters grow up and leave home and fall in love and wonder why she still lived at home with mum and dad, didnt have a boyfriend, and couldnt be a doctor, or an astronaut, or whatever she chose to be (note, it's easy to have an idealistic view of a healthy little child with down's with mild learning difficulties, but that is often far from the reality).

Not a day goes by where I dont think of what our daughter would have looked like, and how happy it would have made us to see her little face, and whilst the pain of what we went through is fading (except on occasions like this where i am reminded by the ignorant and judgemental attitudes of people like you), our love for that little girl never will, and she will always be with us. Yet, we both feel that we have done the right thing.

kh0609

I'm sorry to hear you are going through this. As you can see from my previous post, I went through something similar last year and I know how painful it is.

All I can really add though, is that having trawled through the antenatal results and choices boards a LOT last year, it does seem that the anecdotal evidence is a lot more positive when the nuchal measurement is normal and it's the hormones that push your risk up - 1.7mm is well within normal. Obviously you are going to be feeling very distressed until you get the results of an invasive test (btw why do you have to wait for amnio, cant you have CVS?), but in your case I'm genuinely certain that you shouldnt lose hope and that theres a very very good chance that everything will be ok.

Whatever the outcome of the tests, there are many many women on mumsnet who have been through similar experiences who can share there stories and if comes to it, make a decision which you are at peace with.

Thinking of you and hoping for good news.

Ilovekittyelise: im too far to have an CVS when i went for my scan i was actually 13+4 so i found out when i was over 14 weeks. I saw my consultant on monday when i was 15 weeks convinced i would have it done there and then. he advised me to wait until 15+4 to reduce the chance of miscarriage. the hospital cannot fit me in until im 16+3 eventhough i have begged to be done sooner, i have even asked if i could be done at another hospital 3 hours away but again they are fully booked.

living in the middle of cumbria limits my options!! to make it worse i will probably get the results on my daughters 2nd birthday which i am not looking forward too as i want the day to be full of love and laughter for her.

i cannot begin to understand the hell you have been through and the tough decision you had to make.

Kh0609, i am so sorry you are going through this, im nw 17weeks and babys nh was 3.1mm, i was so shocked and beside myself because of the unknowen, my bloods came back at 1 in 580 so am very fortunate but i had to wait 10days for the results and was the hardest 10days of my life.
babyonbord i find it utterly disgusting that you would come on here with your shitty opinions and upset this lady when she is already having a hard time. she came on here to get support and ask people for their experiences, did u ever think she just wanted to talk and get her head around it all abit more?? have u ever been in her position? if not then u have absolutely no right to judge her whatsoever!! people make the right decisions for them and their families and do not need rude horrible people like you sticking your 2 cents in!!
Kh0609 i wish you all the very best!! either way you sound like an amazing mother, you do what is right for u and your family, if u want to have the amnio, then thats what you should do, whatever the result it would get the 'what ifs' out the way! thinking of you :)

I haven't been in the position you are in so can't offer any advice , Ilovekittyelise I'm sorry you had to make such a heartbreaking decision, what some people fail to understand is that there are other health risks to take into consideration , you are very brave to have made the decision you did so that your darling daughter didn't suffer, noone has the right to judge you for that! Good luck everyone

Kh606, please don't listen to this Voldemort. She clearly has an axe to grind and is bringing her own emotions into your life. As you say, BOB "that's just me". Yes. So bugger off and stop trying to run someone else's life.

Amnio has very low risks of miscarriage - about 1%. I have done a lot of research into invasive testing since terminating my previous downs pregnancy for the all reasons kittyelise so eloquently gave. In terms of the amnio risk, (a) it is a national average - in the hands of a skilled and experienced consultant, it is likely to be much, much less; (b) those risk figures were set in the 70s when amnios were done blind - all they did was palpate the uterus and go in (I had read this and it was confirmed by my consultant only two days ago when he performed my cvs). Now they use ultrasound to guide in the needle; (c) the risk rate is skewed by the fact that amnio is performed in cases where there is a high risk of abnormalities and those babies are more likely to be miscarried in any event.

I had cvs this week when my risk of trisomy was 1:1896. I needed to know.

Sorry, Kh0609 - didn't mean to get your name wrong. Wishing strength to you.

If i knew my mother had me knowing she had a 50:50 chance of passing on the same chromosone abnormality she had to to fulfil her need to have a child, i would call that selfish. People in glass houses shouldn't thrown stones, look at your own personal situation before you comment on mine.

Just to clarify when was 0.5% a high chance of causing a miscarriage, i take it your mental age in maths is the same as your mental age used in contributing to an adult conversation - very limited.

Leave me alone and crawl back into the little hole you climbed out of.

An amnio has a very low risk of miscarriage, not a very high risk. And even though miscarriage is a possibility it can also be the case that the pregnancy was going to miscarry anyway.

Babyonbord - if you really must come back here with more unhelpful and insensitive judgement at least underpin it with fact.

thanks ghislaine the above comment was aimed at you!!!

sorry mistype meant to say wasn't aimed at you,

That's ok - I was pretty sure it wasn't!

Quite simply there is a higher risk of having a miscarriage if you have an amnio than if you don't. I am perfectly entitled to my opinion. You get the baby you get it's not a choice, yes having a child with learning difficulties is harder but that's part of being a mother isn't it? I didn't have any tests for downs because it makes no difference to me what child i get, if they have problems then that's part of life what would you have done before they offered these tests abandoned your baby at the hospital because they weren't what you "wanted" it's a shame that's the way the world is going.

Surely theres things to think of like quality of life when it comes to downs? You could argue that its selfish to have a heavly disabled child to fullfil your own wants and needs.

My point being its not so black and white, they're lots of factors to think about and its not an easy decision when you actually have to make it.

I'm sure if you asked my son in ten years time if he would rather be alive or not he would say he would rather be alive. I would say the same thing, if we are testing for ds where do we draw the line?
What if your baby doesn't have downs but has autism instead? Having children always comes with a risk that they might not be "normal" whether it's ds or something else but it's a risk you have to take if you want to call yourself a mum.

"I'm sure if you asked my son in ten years time if he would rather be alive or not he would say he would rather be alive."

With you for a mother? Don't be so sure.

At least i didn't abort my child i guess that makes me a better mother than some doesn't it.