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

Oh and don't forget the help will look after the baby if there is anything wrong with it

Hey, no worries. Let us know how you get on, and I will be thinking of you next Wednesday and for the two weeks for the results.

kh0609 I didn't have any of these tests for any of my 4 pgs as it would not alter my decision to continue with the pg. Or rather, I didn't want it to alter my decision and therefore decided not to be placed in a position where I might have that choice. But that is my choice.

I am utterly at babyonbord's vile misspelt and ignorant posts.

I truly hope that you get the results you are hoping for and will be thinking of you until they come back.

Never liked Mazdas anyway

Buttonmoon and that was I struggled with the mist I think, I really didn't consider the impact of the results of the tests just blindly said yes. It has made me seriously rethink what I would do if I ever got pg again.

blimey. i've just checked back into this thread and read some more of babyonboards bizarre rantings. i presume the comment about being a bad mother for choosing to abort a down's pregnancy was aimed directly at me; i don't know enough about you to make judgements about your parenting skills or lack thereof (nor you mind incidentally) but i certainly hope i will bring my son up in a rather more open minded way so that he understands other people's choices and treats them with respect regardless of whether they are choices he would make himself (oh and moreover he will understand that there are certain choices you cannot really understand until you have walked in those shoes) when he is old enough we will explain to him about the sister he never had, and how we made that choice because we loved her and did not want her to suffer, and i think he will understand from seeing how upset that talking about it makes us, that its very very important to treat children with difficulties with kindness, understanding and patience (note to babyonboard: on second thoughts, yes, i do think im in a position to judge: kindness, understanding and patience do not seem part of your repertoire of emotions unless you have been portraying a particularly incomplete picture of yourself with your ignorant poorly-informed judgemental rantings).

just to clarify the situation to those who are interested in hearing the actual reality of being in that position. down's syndrome is not about a cute little kid with mild learning difficulties. that is one end of a very large spectrum ability wise. the chances of down's resulting in a serious heart problem is incredibly high (im not just talking about small valve repair here) and is likely to involve a child having repeated and extensive open heart surgery. it is also associated with blindness, deafness, and amongst other problems, type 1 diabetes. I myself have type 1 diabetes, meaning that the risk to our child was immense. whilst this is a condition that with relentless hard work i can manage and keep risk of complications to a minimum, there is no way on this earth that someone with down's would have the mental capacity to keep their condition controlled enough to minimise the risk of kidney failure, amputations and blindess, not to mention, that the life expectancy of someone with down's is now about 60, and along with that it is now observed that there is an incredibly strong correlation with early onset alkzeimers (like aged 25/30), and round the clock care is often necessary.

judge me as much as you like, i really couldnt give a sh*t. i know that we made a choice that spared my beautiful unborn child a hard hard life. to say that im a bad parent for that reason is ludicrous. it is nothing to do with the perfect child, it is about loving your unborn child so much that you want to spare her un-necessary suffering. it is not about disposing of imperfect goods, that little girl will always be a part of us, and wherever she is she will know how much her mummy loves her.

babyonboard im now going to report your offensive posts because you are a rude judgemental bigot and i dont think im the only person sick of hearing your views.

Hi OP, I popped over to read this after you posted on Lulu57's thread about her horrible experience with her consultant.

Am I the only on who seems to think BabyonBORD (and I am sooooo BORED!!!) drip feeds and (I may be wrong) but makes up half the things she posts? She seem's to have the same problems as every other poster (BUT knows all the answers and thinks only her oppinion counts). I have now decided she is simply a horrible individual who we should all ignore. When she replies to this (and let's face it.......she will) I plan to simply not respond.

Finally, good luck OP, please let us know how you get on, I will be thinking of you. x

i reported her; i've no idea whether the mumsnet team will actually do anything but here's hoping. this is supposed to be a supportive and non judgmental place where people share experiences, not a soapbox for the ill-informed and bitter.

Kh0609, I'm sorry your thread has been derailed into the rights and wrongs of having an amnio (which is all you're doing) or acting on the consequences. And I want to apologise for rising to the troll bait - it just made me see red that someone could have such a simplistic view of the world.

I know you know this, but there is absolutely nothing wrong wanting peace of mind or extra knowledge about your baby before he/she is born. It has nothing to do with abstract notions of perfection but about your own self-known capacity to cope with what might be coming your way.

I'm so sorry you are going through this. I had similar recently with DC3 - a 1 in 34. Ultrasound looked clear, NT was 1.6mm, but the bloodwork damned me.

I have exactly the same sentiments as you as regards children with Down syndrome, abortion etc. I also desperately needed to know, but I knew I couldn't live with myself if the amnio caused miscarriage. It didn't help either that a lady on a due date group I was on lost her healthy baby as a result of amnio at a top clinic either.

So I went for a late amnio at 32 weeks - the NHS offered this. The risk of miscarriage becomes a risk of preterm labour. DS does not have DS, and best of all I found out before birth but without really risking the baby.

I won't lie - the 20 week wait was horrendous, and I got very obsessive over all the facts and figures, but for me it felt like a good compromise.

A few more things - I believe my bad bloodwork was caused by my bHCG being higher than normal due to first trimester bleeding. IVF or vanishing twins can also cause abnormal bHCG, and of course some people have higher than normal levels naturally anyway.

Low PAPP-A is related to the placenta - mine was crazy low at 0.2MoM which was the main driver behind my bad risk. If your PAPP-A is low (below about 0.4MoM I think) which I suspect it is, you should be offered a growth scan at 28 weeks or so as it can cause growth problems, and there is also an increased risk of pre-eclampsia. Chances are fine all is fine though - I think I was told with my number it was about a 1 in 20 chance of any of these things happening and of course with proper monitoring the risks to the baby and you are not significant even if something does happen.

Frustratingly there's a maternal blood test that will be available in a few years that gives a 99% accurate test for Down syndrome i.e. if it comes back positive, there's a 99% chance the baby has it. If it is negative, there's a 100% chance the baby does not. Which means for those mothers who screen positive for Down syndrome, most will never need an amnio and have to make that particular awful choice. Roll on that day!

Sending you strength - it is a very hard time. I heard so many happy endings even with crazy high odds over the time I was waiting. I could never judge anyone no matter what their choices over these things and how they end up.

i've read about the blood test and it seems a much better way of detecting downs, i hope it would soon be offered to all pregnant women to eliminate to worry and anxiety alot of us have to go through.

Its so nice to hear from people who have had smililar risk factors as myself and have had a positive outcome. im trying to stay positive but until i have my results i will always have the i will be the 1 out of 25.

i'm just trying to focus on having a positive scan and hope by bloods are reacting how they are due to something else x

ilovekitty - thank you for reporting the waste of space that is babyonboard, with a bit of luck we won't hear anymore from her, she will probably be driving round in her new mazda (for the record, the luxury life she protrays to have is probably a fantasy, i find it sad that her partner feels the need to have to reward her for giving him a child. from someone who thinks every child is a gift i find it strange that she finds it acceptable to receive a material gift for having a child).

Thanks again x

been for my amnio today so its the waiting game now.

I didn't find the amnio too bad, i didn't feel any pain an so far (touch wood) have been fine since, i'll keep you all posted on how i get on xxx

Kh, how long do you have to wait?

friday i hope!!

Good luck kh0609, My amnio result came back a day earlier than I was told so you may hear sooner. Hopefully everything will be ok. I was 1 in 80 and had a 2.4 fold but everything was ok in the end.

Just wanted to add my support and say how disapointing it is to see some of the horrible comments.

thank you!!!

Hope all is well let us know

Hi, I just wanted to wish you all the best for your results.

Also wanted to say, what a kind and sensitive post from Sparklies - what a relief after the vitriol from someone else earlier. I am surprised about being able to have a late amnio. As someone that was considering one, I ruled it out on the miscarriage risk and no one mentioned you could have one so late.
Good luck for tomorrow.

good luck for the results, i know it's a tough wait. when i had the cvs i was told that if it seemed to go smoothly at the time (it did), the risk of miscarriage was significantly less.

Glad to hear it all went well. I have everything crossed for you. Only a day or so to go. Try and keep busy in the meantime. Thinking of you.

would like to wish u all the best, it must be horrendous waiting to find out.

i personally opted out of the testing but only because of all this.... the sonographer explained that it was a series of tests not just the nuchal scan and blood test and if i were to high risk i would have to consider an amnio. i had already had an mc in dec 09 and got pregnant again in april 10 . i joined mumsnet to talk about losing my bean when i came across a mc thread about a lady that had an amnio after all the prior tests indicated a very high risk in downs, anyway she miscarried a healthy baby boy soon after the amnio, so my mind was already set from that moment that we couldn't risk that having that happen. but every day thru that pregnancy i was worried sick until i gave birth to my healthy baby boy in jan. its such a shame sometimes that these tests that r there to inform us can cause so much worry. im against abortion myself again for a good reason im mom was 37 and dad 56 when they got pregnant with me, my dad freaked out and demanded my mom have an abortion. luckily for me she chickened out just before it was going to be done. but i still dont judge other people for there reasons of having one.

i think babyonboard is extremely cruel in the way she has thrust her views on such a sensitive subject.

all the best to all u ladies and babies

Less than 24 hours until i get my results, i think tomorrow is going to be a long day. Starting to get nervous now, i really want to know the results but not sure if i am mentally prepared for bad news :(

You don't need to be prepared. You will deal with it when it happens. It is impossible advice to follow, but my brother said when we were waiting for our results, that worrying will not change a thing. You don't need to make any kind of decision until you know for sure. Try and keep yourself busy. I so feel for you, I walked around in a daze that whole 2 days waiting for the results. I sincerely hope you have good news xx

Thinking of you! Hope they ring you nice and early so the suspense doesn't carry on for too long.

I was told 5 working days for my results - scared the life out of me when they rang 30 hours later just before 9pm at night. I was NOT expecting it then and had actually started to relax thinking I didn't have to listen out for the phone! Thankfully all was okay and I was so grateful she'd told me then rather than giving me another sleepless night to worry.

Good luck - I had a 1:12 risk with DD, had a CVS and the all clear (thankfully) - she is now a very lively 18 month old! I wish you all the best.x