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downs syndrome

ive just had a 1 in 20 chance result 4 downs and im terrified lots of choices but which way do i go?


  • thanx 4 replyin x x evry1 is tryin t help but my head is all over such a difficult decision to make
  • glad i remembered id joined baby expert havin sum1s advice who doesnt no u personally is sometimes easier. wil u b avin anymore or is 4 enuff x x
  • sory not ad chance to reply to u. nice pic by the way. this will be my second baby and my other baby wil be 18 in marchxx
  • Hi Sharron

    I know how you are feeling, I'm 38yrs old and had the blood tests for Downs, came back as high risk, I was told at 3.45 one day and told I was to attend for an amnio the next morning. When I got through to the hospital I couldnt go through with the test and risk miscarriage, also scared of the result I would get. Im just waiting now for my 20 week scan to see if there are any soft markers for downs. Everyone tells me to put it out of my mind and not to worry but thats difficult to do. I think the hardest thing is making decisions, I wish now I had not had the blood tests, at the end of the day as an older mum to be I kne I was high risk and whatever would happen would happen, now I feel I have to make a decision based on test results which I dont feel able to do!!

    I have read so much information on how unreliable these tests can be - my midwife told me that someone was given a 1:3 risk and the baby was still ok. Also any weightloss or bleeding in pregnancy can vary the result. You have a 1:19 chance of a healthy baby and you need to cling onto that. Hope all goes well for you. Take care.:\)
  • hiya it is very difficult ive had my 20 week scan and everything looks fine well just have to wait and see i wouldnt have the amnio because of the miscarriage risk and i hope you have as much support as i have from family and friends im not online much but keep me posted on how you are doing take care x x
  • I'm not sure any of you will check this, but I wanted to let you know that our son is nearly 2 and has down's syndrome. He is an utter joy, we wouldn't change him. Google the down's syndrome association - they give great info and support. We have actually adopted our son, so completely understand that not everyone feels able to cope with a child with a disability. It's very natural to feel shocked, sad and angry but all the parents we know who have children with down's syndrome would not change them for the world, yes there has been a feeling of bereavement - mourning for the child they hoped for or expected but down's syndrome isn't a terrible life sentence I promise!! I hope I've helped relieve some anxiety if you get the chance to read this.
  • Hi everyone, i just wanted to jump in and say that i used to work with people with downs syndrome and i have to say that there couldnt be nicer, more pleasant and happy people to be around and they are a joy to work with. Not that i would even call it work, they are all fantastic and have their own lives and dont let it stop them doing what they want. They go to work, make their dinner and do their own washing etc. I hope that my little girl [who dosnt have downs] can be as nice and helpful and loving as some of these special people i call my friends. xxx
  • Hi, I've just given birth to a beautiful baby boy who has been diagnosed with Down's - it is a shock, but you get over it and enjoy being a Mummy just like everyone else!!! We didn't have any of the screening tests, and there were no markers on the 20 week scan - and I'm only 28! - so it's just one of those things!!! You need to decide what is right for you, but it is still your baby, down's or not, and you will still see a lot of yourself in your little one - trust me! x

    Sarah & George - 2 weeks and 4 days old!
  • hiya i just came onto this topic coz i was interested in it!

    The thought never crossed my mind that i mite of had a downs baby, but what they say is true, the biggest worry i had was that my baby was going to be born with ginger hair (big deal i know and quite petty) when Lewis was born, i thought he was perfect, he didn't have ginger hair but even if he had i wouldn't of cared!

    I work with with a guy that has downs, he is quite bad, he cant speak and he cant do much for himself but he is nice to work with!

    Can they not see in the 12 week scan if your baby has downs? - whats your thoughts on it!

    me and my partner did speak about it before i landed pregnant and we both decided that i wouldn't carry on with the pregnancy if it had downs or spina bifida, probably made this decision for selfish reasons! but once i landed pregnant it was a totally different conversation and we did think about it again but not for long! i dont know what i would of done, but then i just thought i was only 27 when i fell pregant and if i was carrying a downs baby we would just terminate and then have another one! that sounds quite bad, and selfish but i guess thats what alot of people think!

  • hi, my son hasn't actually got downs but i was reading this and didn't want to read and run. my son actually appears to be blind at the moment (can't be diagnosed properly until a million and one tests have been done) but i love him more than anything, and yes i had visions of having a seeing boy
    ( tbh the thought never crossed my mind that he wouldn't) and all the things we could do together etc, but i can honestly say that had i been told whilst pregnant he would be blind (if thats the case) i would still have carried on, children are beautiful no matter what shape or size they come in. i know people feel differently and it may be shock more than anything else that let's your guard down on this matter but i personally decided i didn't care if my baby was downs because i would love him all the same, but, if i was completely honest i think i would be thinking long and hard if i'd been told he was missing limbs!you just don't know til you are in that position. the most important thing is you follow your heart and you do as much research as you need to so that when it comes to it you know it was your decision and there were no unanswered qns or doubts. good luck and take care of yourself
  • hi

    i have a 30 year old downs sister and yeh their are times but their is with every child..

    my sis cannot read,write,count, but can talk walk fairly well and to be honest i wouldnt change her for the world i have her every friday to give my mum a break. my mum was only 22 when she her so a total shock..

    i have 5 kids and wouldnt have test with any even tho i was advised wouldnt make any difference to me,so why waste resourses etc?

    do what u feel is right its your body your baby...

  • My last ultra sound, they found calcium in my son's heart. They said it was one of the many signs of downs, and didn't seemed worried at all. They assured me he'd be okay that the calcium usually work its way out by 26 weeks, but I haven't been given another ultra sound since. Come to think of it I've only had 2 ultra sounds.... and I'm 28 weeks.....
    Should I be worried?
  • Hiya,

    I don't want to offend anyone but I just wanted to share my thoughts and experiences on Downs with you all.

    I have been brought up with kids with Downs and other problems since I was 2yrs old, through my family fostering, a member of my family has also been a teacher at a special needs school for over 25yrs. A member of my family is now in her 30's with Downs. She also has cleft palate, profound hearing problems, thinks that characters in soap operas are real and can often be heard talking to her imaginary friends... how we love her image

    I personally wouldn't have a child with severe mental disabilities but that is my choice. My 2nd baby is due in December and like every parent I pray that it will be healthy but I know in my heart that I couldn't commit myself to care for a person who will have the mentality of a child until I die. Yes mentally disabled people can have a decent quality of life. But most will never get to do the things so often taken for granted. Get married, have kids, go uni take a gap year to travel.... Would I want my child to not have these opportunities NO.

    There are a high percentage of children in care with Downs and such disabilities. I think that if you know you are going to have a child with Downs etc you should go to a special needs school and spend the day with the children in their teens and then go to a special needs care home for those who are older and make a descision based on facts it will also give you more of an idea if this is what you want. Don't let people sugar coat having a child with severe disabilities as different people have different capabilities.

    Then saying that as a parent I know that love and determination are enough for some parents irregardless of what problems their child has they face it head on together as a team.

    Good luck with your desicion. You said you have a one in 20 chance... which also means you could be one of the 19 who have a healthy child.

    If you have any questions ...I am here.

  • I have just read this last post with great interest. I too had the same thinking about having a disabled child, in that I basically wouldn't cope with the lifelong commitment. My feelings on having a child aborted because of some disability changed while I was pregnant, knowing that I could not kill the child that I had felt wriggling around inside of me. And then, at the age of only 28, I gave birth to a little boy with Down's syndrome, with no pre-natal diagnosis. So what am I supposed to do now? Send him back because he's not the perfect baby we were expecting?
    George is now 13 months old. Mentally, he is age appropriate, he's crawling, can say a wide range of speech sounds, is all over the place and has just started walking while holding our hands. He has had the support of not only a Mummy and Daddy who think he is the most amazing thing ever, but lots of professionals who have helped to shape him into the fab little boy he is. We regularly attend groups and things at special schools, and they are the most fantastic places - and as a teacher, that was certainly not my impression before I actually went inside one. I never felt I could teach children with disabilities, yet I am now actively seeking a job in precisely that area.
    We are very aware that we have been incredibly lucky with George, in that he does not have any of the major health problems commonly associated with the syndrome. He is developing relatively normally, so much so that some people have actually questioned the diagnosis.
    I am quite surprised that as someone who has grown up around people with disabilities that you are really quite negative about them. How do you know how affected a child is going to be from a scan? Can you imagine how we would have felt having George aborted, knowing what we know now? I honestly don't think that you can ever truly say what your reaction would be if faced with the prospect of raising a disabled child, until you are actually in that position yourself - and I don't mean living with them in a foster-type situation, I mean actually giving birth to one. Your own flesh and blood. We have certainly not come up against any of the old stigmas associated with Down's syndrome, and have received so much support sine he was born. If and when I fall pregnant again, I will not have any of the tests done for Down's or any other abnormality. Every child has the right to the best quality of life that they can possibly have, and if that means that their prospects are different from what ever is deemed as 'normal', then so be it. The unselfish love of their parents (which should be the same for any parent) will be enough to give them what they deserve.
    I hope that anyone reading your post will be able to see beyond the negative and think of the joy that any child - disabled or not - can bring. And the fact that disabled children have to face such adversity only makes them more special.

    Sarah & George (one very special little boy)
  • Sarah,

    My post wasn't negative it was realistic and I mentioned that I personally wouldn't have a child with downs or anything along those levels it doesn't mean it would be an easy task for me or anyone who came to that decision...far from it. I am well aware that there are different levels of mental handicaps. Having your child was the right desicion for you and I am glad you have support and that George has inspired you to train to work within that area. However, like you had the choice to dedicate yourself to raising a child long term I take my right not to do that. You say about having a child has a right to a good quality of life irregardless if opportunities are different and so be it but that is easy to say as a parent of a child with disabilities. It however could also be argued that, children born severly disabled don't ask to be born that way and go through life not being able to have what others around them have. I know that I wouldn't want to have had a life like that and if I got in an accident and was in a vegetative state I hope my family would love me enough to let me go. I'm not asking you to agree with me and I love the people I have been raised with but I want to point out that whatever choice you make it is not going to be a walk in the park. It's quite frankly silly mentioning about sending children you don't want back. I mentioned there are a lot of children in care with severe disabilities this is unfortunately fact and it is a shame not more people step up to the plate for these kids. Like you said you believe was best choice for you but it won't be the best choice for everyone. My family member who I mentioned with Downs didn't always talk to herself these are things which have developed with age. If you look into it you will find most people with Downs get earlier onset of things such as dementia etc but saying that I think life expectancy is lower than normal. I don't want to upset people but then again I will not do what you seem to want and paint rose tinted glasses. Imagine a scenario you're in your mid 70s with a mentally handicapped daughter (not specifically Downs) in her mid 40's who is very strong, has epilepsy is incontinent and likes to head butt when asked to do something she doesn't want to do. You love your child and ofcourse she will be living at home but she has bad fits, you have to wash and bath her, deal with dirty knickers, and risk being physically attacked by your child who is no longer 4 but 40+...this isn't something that everyone is able to cope with ...having support or not. It doesn't make them bad people because they choose not to do that. I just want people to know it isn't easy. Going back to you saying about flesh and blood and it not being the same fostering... I totally disagree with you and you really wouldn't know how I feel to make that statement. I was 2 when my family started fostering and every person is family to me like siblings.
    I know about unconditional love and my own son had special needs when younger and that was a big struggle on my own at the time, let alone with PND and financial probs etc. I'm glad you have George and wish you have a lifetime of happiness. You speak as a newish mother and I speak from 30yrs of experience and as a mother myself. I'm not telling people what to think but sharing my thoughts. Letting people know who have this uber hard desicion to make when faced with having a severley handicapped child that it is ok to be apprehensive and it is ok to say no.

  • ps Mrs S. I remember speaking to a member of my family quite recently about different levels of Downs and I was told that it is believed that there is a type where children have the facial appearance but that it is and have no symptoms. If you think your child is developing fine maybe it is something you can enquire about, However I don't know much about it and I don't know enough to say anymore xjx
  • Hi Sharron,

    Good luck with your baby I'm sure all will come together in the end. I was going to reply to the comments joanneandbrood made but what's the point! I believe in educating myself and learning through experience which is how many things are learnt throughout life. I didn't sit here and type away to hurt people but to give you a different point of view from my experience and have had everything that I have said picked at and belittled. Yes children with Downs can have a good life with the right support etc. Most children who get put in mainstream school who are severley mentally handicapped do not go into normal classes with children who are at the normal level (I'm not saying it doesn't happen at all). I know a boy with severe autism in mainstream and 90% of the time he has special lessons. It doesn't make a child less disabled being at main stream. I think that in today's society that every woman should be able to choose what they think is best with regards to parenthood. Irregardless of whether they want to have a child, have an abortion or adoption. Maybe I misunderstood what you were saying ie what way do I go... I thought you wanted a collection of people's ideas, thoughts, experiences so you could draw your own conclusions...maybe you were talking about something completely different maybe it's my pregnancy hormones!! Some people are obviously very defensive about such a sensitive subject and I understand. I have many good things I could say about having a child irregardless of disability or not but that wasn't what I was speaking to you about I thought enough people would tell you the positives and lets face it I do type a lot and could probably take up 5 pages or more with my thoughts on pros and cons. No one on here is an expert in the field their just individual's opinions tc xjx
  • Thank you to Joanneandbrood and Smoochiegal for your responses. It is clear that there are some very strong feelings on this issue, and this debate could rumble on. Far from feeling defensive and/or offended (which initially I thought I might, I must confess), I actually don't feel either - if having George has taught me anything, it is not to give two hoots about what anyone else thinks. The only person's views that we care about are those who are there to care for him - be that family or the medical/teaching professionals that come into contact with him. Maybe this is obvious to the people that we meet, and maybe that is why we have not come up with any of the prejudices that are commonly associated with the syndrome. And, as Joanne said, this is 2009.
    Smoochiegal, I agree that none of us know what the future will hold - but then, if we lived our whole life wanting to know what would happen, I don't believe that anything would ever get done. How do we know that a 'normally' developing child will not grow up to develop, for example, mental health issues, which may require them to have the same level of care as a person born with a disability?
    All I know is that I have a beautiful little boy, who amazes us every day with what he can do, and how he is developing - and I'm his Mummy for life, be that the next 30 or 60 years - providing I don't kark out before then! image

    Sarah x
  • I'm sorry but I don't think we have the right to choose who lives or dies like you said? Even though the law thinks so, I think you are heartless and no I don't apoligise for being blunt.

    Mrs S I think you have been very gratious in your post. Well done.
  • Sharron your msg was poigniant with valid points. No one knows what tommorow brings and at the end of the day what others think shouldn't matter.

    I think that any subject involving children will always bring passionate points of view to a debate.

    Lemon cupcake abortion is a very controversial subject - you have the right to an opinion as much as the next person but you shouldn't really make a sweeping statement about people who have a different view to yours just because you don't agree with it ie calling pro abortionists heartless... you don't know what pushed that individual to that decision there are a no. of factors to consider: underage, finance, ability to cope, finances/security, accidents, lack of education, lack of contraception ie 3rd world countries, rape, bereavement, risk of health to mother or baby, severity of disability.... have you seen what happens in a late abortion I can't begin to imagine the trauma caused! I seriously doubt it is something a woman would go through lightly.

    Anyway... abortion is another subject many thanks Sharron for giving me an opportunity to share my thoughts/experiences with you.

    Good luck.

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