Babies with Downs Syndrome.......

[WILMAFLINSTONE]

.....has anyone had a baby with Downs Syndrome and didnt know it had DS before the birth?

I know its a touchy subject for some people but I just thought Id ask and see if anyone has any experience of this situation, what their thoughts and feelings etc were and how they dealt with it no knowing in advance!

We decided against any testing. And know with my age theres a slight risk but are happy to be blessed with another child regardless of anythinkjg like DS etc but just sometime we talk about it the 'what if's' so thought Id start this thread....

Thanks in advance...and hope this doesnt offend anyone as its not meant to!

xx

 

[rachaellouise]

I think it is a very personel thing tbh, I personaly would find it quite hard to deal with, but would obviously try as I would hate to give up my child.
I think I would find it easier to cope with than a physical defomity such as a missing limp, as I suffer from Dysmorphophobia, Apotemnophobia.

 

[sexyamy2005]

i wanted to find out, so i cud prepare myself just incase, i work with vulnerable & disabled adults and love the fact that they realy to take it in there stride cos they "dont know anythin different" but i wasnt sure as a parent if i would be able to act like that..

i did find it difficult to purswade Craig to let us have the tests, both his parents are disabled, (both physically but his mum has a really bad speach impediment and struggles sometimes with people thinking she has downs)

i know we woudnt ov ever got rid of our baby regardless of if the results but i wanted to prepare myself just incase it did happen, because im just like that, i can accept things once i have had time to get my head round it if ya know what i mean,

my niece has downs syndrome and her parents didnt know b4 she was born, and they didnt regret not finding out at all, we all love her the same, it just came a bit of a shock i think to them to have a little girl that needed and will allways need more attention than there other little girl who hasnt got it,

good luck with ur pregnancy hun, and like you said, it is a bit of a "taboo" subject but without people talking about it it wont ever not be



xxx

 

[Rósa]

I had the tests because I wanted to know, I wouldn't have terminated if the tests had come back postive, but Im the sort of person who needs to know in advance. I'm a full time carer for someone with down's , he is 26 now and I have known him since he was 3, he has hearing difficulties but refuses to wear hearing aids, but he does tend to be selective deaf , he also has difficulties with people understanding his speech at times, but once you know him, you don't have a problem, he is very sweet and loving, but will never be able to be completely independent and will always need someone in the background to help with shopping/money/transport etc. being with Andrew meant I knew I would cope if I had a baby with Down's, but it also made me realise they are never ever totally independent, Andrew is lucky he doesnt have any health problems that can be associated with down's so I have it easy. My chance of having a baby with down's is 1/1800 odd, but I may be that one person, it may seem horrible to some but i hope I am not that one person as though I would cope and deal with it and love my baby, I would prefer not to have a baby with down's

 

[rachaellouise]

I had the tests because I wanted to know, I wouldn't have terminated if the tests had come back postive, but Im the sort of person who needs to know in advance. I'm a full time carer for someone with down's , he is 26 now and I have known him since he was 3, he has hearing difficulties but refuses to wear hearing aids, but he does tend to be selective deaf , he also has difficulties with people understanding his speech at times, but once you know him, you don't have a problem, he is very sweet and loving, but will never be able to be completely independent and will always need someone in the background to help with shopping/money/transport etc. being with Andrew meant I knew I would cope if I had a baby with Down's, but it also made me realise they are never ever totally independent, Andrew is lucky he doesnt have any health problems that can be associated with down's so I have it easy. My chance of having a baby with down's is 1/1800 odd, but I may be that one person, it may seem horrible to some but i hope I am not that one person as though I would cope and deal with it and love my baby, I would prefer not to have a baby with down's

Thats not horrible at all, I think any parent would feel the same, all we all want is the best for our children.

 

[lauren86]

i don't know anyone that has had a downs baby but i had a scare when i went for my 12 week scan when pregnant with Ethan. I was then 23, i do not smoke or drink and i am a very healthy person but because he had tricuspid regurgitation with his heart there was a possibility he could of had ds. I let them work out the chances and it was 1:80 or something like that i couldn't belive it! I went on to have my 20week scan and a private on and there was no sign of any problems. Because of that i didn't really enjoy my pregnancy very much until i was about 6m, you always think about the possiblity that your baby could be ds. It never crossed my mind though to terminate the pregnancy or have any invasive testing. Xx

 

[mablestarr]

I had the triple test done at 18 weeks which came back high risk. I kind of felt that I would not be strong enough to cope with a child with downs, but was at a stage where I could feel baby move everyday and so didn't even want the amnio as if it did come back bad I'd have to try and deal with all the emotions and desicions so decided not to get any further tests. (Not sure though if ignorance was bliss)
At 20 week scan they noted that the baby was small in particular his femur length which further indicated a chance of downs, we discused with the consultant at that stage that we could not terminate the pregnancy and so the consultant was happy for us to not have an amnio.
However last week I've had the amnio due to baby not growing, waiting for the results was very stressful, and even though I've had some reults I still have to wait until monday for the downs results, but the consultant is pretty certain baby does not have downs after doing all the scans etc.
Its a very dificult subject and I think that my opinion has changed during my pregnancy. I think if I get pregnant again I would actaully pay to get the nuchal scan and blood tests done, as I would need to know.
xxxxx

 

[midnight]

i dont have experience with ds but my son is disabled and we didnt know through scans test ect we didnt really know until he was over 1 but i suspected something was wrong earlier as he wasnt the same as his sister but you deal with it and it just becomes normal iykwim he is a very happy child and even though he does have disabilities he doesnt let it stop him enjoying his life and doing most things a child without disabilities does even though life with a special needs child seems daunting it really isnt you have lots of support available if needed and it is very rewarding any little thing that they achieve seems like they have just climbed a mountain

 

[Archiesmummy]

I had the test with Archie, and will with this one but i personally wouldn't mind either way. I have been bought up with an uncle (who sadly isn't with us anymore) who had DS. My OH said he wouldn't be able cope. I wouldn't think any different of a person who decided to terminate. It all comes down to if the person can cope or not.
xx

 

[WILMAFLINSTONE]

Wow ladies thanks for all your honest replies! Kinda helps to talk about the possibilities with others doesnt it and like some of you said it will only stay a touchy subject if we let it and dont talk about it so thanks again for taking the time to reply!

Mstar hope all is well with yourresults tomorrow will be watching for your update xxxx

 

[cherelle]

my OH really wants me to have the tests because he has seen how much his parents have struggled with his younger sister who has severe learning difficulties. His little sister is now 22 but has to be cared for and still lives at home and is dependant totally on his parents.

I can see how it must be heartbreaking and difficult to deal with but i dont know if ill go along with the tests yet. I dont think theres much point because i feel like ive bonded with my baby already and im only 8 weeks! I wouldnt give it up now x

 

[WILMAFLINSTONE]

Yeah I understand why your OH might want to know Cherelle but like you say would you be able to make a decision anyway now....I wouldnt! Its hard and think its easier for us personally to deal with that situation should it arrise than have to be faced with a decision we prob couldnt make! xx

 

[cherelle]

yeah definately .... does sadden me when i see his family sometimes though, his parents will always have to look after his little sister and when theyre gone she will have to come to either us or my OHs brothers to be looked after x

 

[Squeakz]

we decided to find out because we didnt know if we could cope with a ds child. i know it sonds horrible but its honest we didnt know if we could cope with a non disabled baby! fortunately our triple test results came back 1:72000 and joshua is healthy! my manager at work had a low risk triple test and her son has ds. she copes wonderfully and he is so loved and wanted and the support she has recived has been phenomenal from health agencies!!!

xx

 

[midnight]

we decided to find out because we didnt know if we could cope with a ds child. i know it sonds horrible but its honest we didnt know if we could cope with a non disabled baby! fortunately our triple test results came back 1:72000 and joshua is healthy! my manager at work had a low risk triple test and her son has ds. she copes wonderfully and he is so loved and wanted and the support she has recived has been phenomenal from health agencies!!!

xx

you do get supported amazingly if someone asked me before having kids would i cope with a special needs child i would of said no way would i cope but suprisingly you just seem to cope its hard to explain

 

[Rósa]

Downs, is one of the easiet disabilites to cope with i think, remember babies can develop disabilities later on like Autism, Aspergers etc, I feel these disabilities may be harder to cope with, one because your child looks "normal" and people can think you are just a bad parent because of their behaviour

 

[skimpy]

We never took tests with either... we discussed it and decided we would never abort a pregnancy based on probability... sometimes think i should have been tested 2nd time, just so we could prepare... although that said, not sure what preparation we would need to make

 

[midnight]

Downs, is one of the easiet disabilites to cope with i think, remember babies can develop disabilities later on like Autism, Aspergers etc, I feel these disabilities may be harder to cope with, one because your child looks "normal" and people can think you are just a bad parent because of their behaviour

your not wrong with the looking normal and people presuming

my son has global delay A.D.H.D and possible autism yet he looks normal and we didnt find out something was wrong till he was 1 even though i knew something wasnt right much earlier

but still you cope i cant explain how but you do when i read about my son medically i think wow he is hard work but to me on a daily basis he isnt any more hard work as you get use to the work involved poeple offer resbite and afterschool clubs ect so far i have refused as we dont need it at the minute as we can cope plus i dont want to send him away i would send the others away so dont see why i should him

 

[JJ Mum]

Well I'm going to be in the minority here , but will be totally honest in my reply.
We got a 1 in 9 result back on the combined nuchal test at 14 weeks, and decided together that we would seriously have considered termination. It was not the day to day early days we were worried about, but as older parentds now - we couldn't have coped with the longer term descision , as someone has mentioned on here already the thought of dying ourselves being outlived by our DS baby (or short term life of other worse chromozonal issue) and the responsibility being automatically passed to our 3 older children, we just didn't feel that we could decide for them on their lifetime too.

contravertial I know, our CVS test came back as fine for all issues, so we didn't have to actually make that kind of descision, but going through with it would have destroyed me, but 95 percent certain we would have stuck with our descison based on our current kids - sorry if this offends anyone, it's just one personal opinion X

 

[JJ Mum]

Sorry girls, I think I really stopped the thread there X