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What would you do.....?

Hey ladies,

I've recently given birth to a gorgeous little boy who was diagnosed with Down's Syndrome soon after birth. We didn't have the screening done while I was pregnant - I'm only 28, and was definitely in the camp of 'it won't happen to us' - and so you can imagine our shock when we were given the diagnosis. George is now 9 weeks old and thriving, and has more than doubled his ickle birth weight of 4lbs 2oz, now being a strapping 8 and a half pounds!

Hubby and I went to see the gynaecologist this week to discuss the diagnosis and my pregnancy. I'd had what appeared a perfect pregnancy (no morning sickness, bleeding or anything) and there was no hint of a problem with the baby's size until I was literally in the delivery suite when the midwife commented on how small my bump was. After the whole Down's thing, we were convinced that the hospital were going to more or less insist on screening in future pregnancies - however, after chatting at length to this very nice man, he basically said that, although I would be monitored a lot more closely with growth scans next time, the issue of whether we had screening done or not would be entirely up to us.

The type of Down's that George has is just the random one that will affect 1 in every 1100 pregnancies - and so, in theory, the chance of conceiving another baby with Down's is pretty much the same as a Mum who hasn't had a Down's baby. There's still a 98.9% chance that another baby would be 'normal' (for want of a better word). We turned the screening down last time because of the risk of miscarriage - and part of me would still not want it again for the same reason. Luckily George does not have any of the major health problems (e.g. heart defects) associated with the syndrome, yet we think we've just been lucky in that respect. I just don't think that I could go through with the screening, knowing that it may lead to a possible termination - at 20 weeks, when you basically have to go through the whole labour to give birth to a dead baby.

So, what I want to ask is - in our situation, what would you do? Would you go ahead with the screening, or just leave things to chance and hope for the best? Don't get me wrong, I love George more than anything in the world, and we wouldn't swap him for anything - it's just one of those things that I'm not sure I could go through again. So what would you do?

Sarah x

Replies

  • wow, its definitely one of those hypotheticals where you dont know what you would really do unless you were in that situation, i think sitting on the outside i would say i wouldn't have the screening again thinking of the chance of miscarriage is horrible and also i dont know that i would actually care either way, you still love your child whatever dont you (general you i'm not qning feelings ). however if i already had one i dont know whether id then be thinking could i physically manage if i had 2 with additional needs, i think it is probably not a question to be taken lightly, after all i assume the only real reason you would want the test is if you would be considering aborting the child if they had downs and therefore i guess you just have to decide IF you were to be told you'd end up with a second downs would you be prepared to abort or would you want to keep them anyway. good luck, i'm sure that whatever you decide it will be the right decision for you. i hope that there is someone that can give you some input from personal experience, perhaps you could ask couples how they deal with downs siblings if it would help. take care and enjoy your little boy i bet he's lovely
  • congratulations sarah, i was pregnant last year and was told at our 12 week scan that our baby's nuchal fold was too thick and we had a 1:8 chance of having a downs baby. we had a cvs just to be sure and it turned out our little girl did. we decided to keep her and tests at 18 weeks proved her heart was ok (as far as they could tell), however at 20 weeks we found out she was a very poorly little girl having also got a piece of her brain missing thus likely to have another syndrome also. we had very little choice but to do the unimaginable. what i want to say sarah, is that we went on to get pregnant again and decided to only have further tests if things looked like there was anything wrong and if there were any markers. fortunately there weren't and we had a healthy baby girl at the beginning of april. we have two other children also (before our precious little angel) and we were also told that her downs was just one of those things so to speak. i was told to look at it as a 1:99 chance of having a healthy child and thankfully we did. good luck to you and i hope this helps.
    susan x
  • hi

    my mum had a downs daughter at the age of just 22 after having me,this was a very big shock.my mum also went on to have 2 other heathly children after my sister.

    ive had 5 kids and now expecting twins and not had any tests done with any as i feel i wouldnt teminate anyway.

    my sister is 30 now and as far as poss we are lucky she does have some quality of life can walk a little ,at the time when she was 2she was on the downs record for the youngest downs child to walk,even tho she hates walking now lol.

    mandy x
  • hi and congratulations on your son. my daughter is 9 now but was a twin which i miscarried early on. i had the bood test at 16wks and it showed levels were high and i had a nasty consultant who said to go for an amio and if necessary abortion as he didnt believe in down syndrome children being born as it wasnt fair on them. after talking we deceided it was our child and wed cope no matter what and didnt want to risk doing an amio and risking a miscarriage. everything turned out well but i went in further pregnancys for the blood test and it came back high everytime. it was just how it was. my last child was 18 months and due to hospital negligence has very mild cerebal palsy. it mainly means she has delayed physical development and is more like a 1yr old. rachel doesnt speak or eat well and cant hold a bottle or walk although she may in the future. shes very determined and very bright. shes lovely and i wouldnt be without her. im now 23wks pregnant and everything looks well on the scans. i wasnt concerned about problems but my partner has struggled with rachels condition and is worried about the new baby. in your case id probably have the tests in the future but only you know what you can cope with. could you cope with 2 disabled children? i didnt worry but thats me and i felt it was my decision as im the main carer. people are cruel and weve heard our daughter called names which isnt nice. be strong and love him as i think youre marvelous and downs syndrome babies are special. all the best xxx
  • hi and congratulations on your son. my daughter is 9 now but was a twin which i miscarried early on. i had the bood test at 16wks and it showed levels were high and i had a nasty consultant who said to go for an amio and if necessary abortion as he didnt believe in down syndrome children being born as it wasnt fair on them. after talking we deceided it was our child and wed cope no matter what and didnt want to risk doing an amio and risking a miscarriage. everything turned out well but i went in further pregnancys for the blood test and it came back high everytime. it was just how it was. my last child was 18 months and due to hospital negligence has very mild cerebal palsy. it mainly means she has delayed physical development and is more like a 1yr old. rachel doesnt speak or eat well and cant hold a bottle or walk although she may in the future. shes very determined and very bright. shes lovely and i wouldnt be without her. im now 23wks pregnant and everything looks well on the scans. i wasnt concerned about problems but my partner has struggled with rachels condition and is worried about the new baby. in your case id probably have the tests in the future but only you know what you can cope with. could you cope with 2 disabled children? i didnt worry but thats me and i felt it was my decision as im the main carer. people are cruel and weve heard our daughter called names which isnt nice. be strong and love him as i think youre marvelous and downs syndrome babies are special. all the best xxx
  • As devistating as it is to get a diagnosis of downs syndrome it is not the worst thing your baby could have and to say that people with downs doing have quality of life is a lie. I know a young man with downs who has his own house and holds down a job! You can't ask for more than that. I don't agree with picking and choosing what child should live or die, that's not my place. I wouldn't get the tests just because I wouldn't want to worry for the rest of my pregnancy about how my child was going to be if there was something wrong. It is however a very personal desicion. Mrs S, you already have a little boy with downs so you know what its like and with the chance of another child having it so low it is probably best not to have invasive tests which will just make you worry. Every child is so precious. I write this as I have just found out that one of the kids at the school I work in has died. He had cerebral palsy and was 15. He had 15 great years and to say that he should never have been born is so wrong! He was a great lad and will be sadly missed.
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