To be shocked 90% of Down's babies are aborted?

[Strictly]

I was jut reading this sorry, yes it's from the DM!

and then did a little Googling and it turns out 91% of people told their baby has DS will have an abortion...

I'm just astounded it's so high. I'm not making a judgment on the idea people might abort, but am very shocked that it seems almost universal to abort if told the baby has Down's.

I wonder what it is about that particular condition that 91% of people feel they could not live with? The rates for abortions of Cerebral Palsy babies for example is nowhere near as high. Is it just that Down's is easy to detect so the majority of people actually get the chance to decide?

"since screening for down syndrome was introduced the number of babies born with down syndrome had actually INCREASED."

Correlation does not mean causation. If true, that is probably because women are having babies later in life now than some decades ago. That means lower egg quality and more DS babies.

I think the statistics actually refer to all babies with ds rather than just those women who had testing. When dd1 was born the hospital collected information - all confidential - no names etc used BUT they had to state whether dd1's ds was diagnosed antenatally or not and whether hers was a life birth or not. So the statistics are worked out comparing live births with those pregnancies which were terminated as well as still births.

I am interested Nancy where you get your information that a lot of pregnancies where the baby has ds do not make it to term due to conditions during the pregnancy?!?!

Some stats here on DS and spontaneous abortion (miscarriage)

'Researchers estimate that as many as 80% of babies conceived with trisomy 21 [DS] are miscarried or stillborn, and trisomy 21 may cause as many as 2% of all miscarriages and 1% of all stillbirths.'

NancyDrewHasaClue, do you have specialist knowledge of Down's Syndrome? I ask because your statement about most babies with Down's not making it is completely at odds with what the consultant told me when I was expecting my youngest, who has Down's. It is true that there are physical health implications with the condition, which can be serious - but as far as I know it is not true to say that it is often fatal. Not these days.

I had a termination when I was told that I was carrying a child with DS.
I did not want the responsibility of that child to be on DS1's shoulders.
I have photos of this child who we called Sam, a girl, and I cherish them. I will never get over her, even though I went on to have 2 more children. The guilt I feel over her will never leave me.

This is a very personal issue, but it does not suprise me that so many have terminations....there are so many factors involved not just how you as a parent would cope, you have to consider your other DC's.

My sister's younger child has Downs, and I can honestly say this has been an entirely positive experience for our extended family.
But then a very good friend of mine discovered at a 9 week scan that her baby had a chromosomal abnormality and aborted the pregnancy. She never thought that she'd make that decision ahead of time. She always thought that she'd be able to continue with the pregnancy and would be fine about having a baby with special needs. But when it came to it, when she looked into her heart, the answer for her was to terminate the pregnancy and to try again for another baby. She's never really been able to forgive herself. None of us have any idea what we'd do if we were in that position.
I refused the testing in my pregnancy. It's a horrible horrible choice to have to make.

Eidsvold the information came from two professors of fetal medicine that I have seen during the course of my current and previous pregnancy. As I said earlier in the thread I can't link to the studies (and they were rather indepth numbers rather than simply reports of studies) as they were provided to me in hard copy.

I was told that research estimated that 80% of babies with Downs will be miscarried or stillborn, although the vast majority of those losses will occur before 12 weeks. I am pretty sure that Downs was cited as the number two underlying cause of death in babies between 20 weeks and term where cause was known. I guess part of the reason that the figure is so high is that Downs syndrome is a fairly common chromosomal disorder.

In addition to myself I now know 5 woman who have lost babies with Downs between 20 weeks and term, although obviously the reason for this high number is down to my experience and the circles I mix in IYKWIM.

Rezbites just to clarify I am not suggesting Downs is fatal in most cases where there is a live bith. In fact I think statistics are that 85% of babies born with Downs will survive past 1 year. However all research I have been told about/referred to suggests that the chances of a baby with Downs not making it to term are high.

could this thread get any worse?

In what way 2shoes?

i'd love to read those studies Nancy - if at some point you can dig up your hard copies and give me a name or something that I can try and google I'd really appreciate it.

Here's a study by Morris, Wald and Watt in Prenatal Diagnosis, vol 19, issue 2, Feb 1999

Trisomies account for a high percentage of miscarriages - another study

CartoonKate - How did your friend find at 9 weeks that she was carrying an embryo with a chromosomal abnormality? I'm curious.

Nancydrew said "I am not suggesting Downs is fatal in most cases where there is a live bith"

only earlier in the thread you said "the majority of babies with Down's syndrome die in the womb or shortly after birth"

The fact is, the majority of people with DS do lead fairly healthy lives, whether affected severely by a learning difficulty or not.

Some of this thread is offensive in the extreme. Comments such as people with DS lead 'tragic lives' and it is 'unfair on siblings to have a child with DS' belong in the dark ages.

As for how depressing it is to carry a child knowing you have a high chance of miscarrying. Been there, done that. I have also watched my 23 week gestation baby girl fight for her life in NICU, knowing that if she survived there was a very high chance of her having CP. Should I have just asked them to turn the machines off? After all, had she had been in utero, I could have had an abortion. As far as I am concnerned, my child is my child, regardless of whether they are the 'perfect' baby we were trying to have or not.

those 2 sentances do not contradict each other.
And acknowledging that not every person with downs syndrome has a great life is not offensive, its real life. You want to tell the women up-thread who talked about her sons life that she is offensive and should shut up?

Those are your choices, for you. It does not give you the right to decide for others.

I never said I did have the right to decide for others and in fact said so earlier in the thread. I have also never sad anyone should 'shut up'.

The person up the thread (and I appreciate her circumstances are difficult) has said herself that she appreciates she is in the small minority and has in fact never met anyone else in a similar situation. I have certainly never met anyone in a similar situation.

It wasn't my choice actually. However, given the choice now, knowing what I do (which lets face it, must be more than most people who don't have a child with DS) I would choose to have a child with DS, just like I chose to keep my baby girl alive knowing she might well have CP.

Are you saying I shouldn't be offended by people with the (ignorant!) impression that my son and other disabled children must leave 'tragic' lives? As long as society holds views like that, people with DS will always be shunned in society and thought s somehow lesser citizens with less right to live than others. In fact, my friend, whilst shopping in a supermarket was told 'that should have been killed at birth'. Nice...

Oddly, my oldest DS sums it up really well. 'Everyone is different, it's good to be different and so why is there anything wrong with people having DS?' He adores his brother so much that one of his potential career choices is to teach in a special needs school.

givemesleep sums it up entirely for me.

I have a disabled son with a chromosome abnormality, who has enriched my life beyond anything I thought possible. I have also cried a river of tears for him. He is in middle of the spectrum for his particualar disorder.

When pregnant with DS3 last year, I had the nuchal scan, and felt terrible about even having the scan, as though I was betraying DS2 and all I believe his life to be worth. As it happens we were offered a cvs there and then but declined it. The reasons behind those choices I cannot put into words, only they were what felt right at the time.

The one comment that does truly upset me is the assumption that siblings will have to care for the disabled child when the parents are no longer able to. That is absoulutely not the case nowadays! Just because DS2's life will not be straightforward I see no reason for the other boys to become his carer. DH and I are in clear agreement about what has to happen as the children get older. It is possible to have a disabled child and still only want the very, very best for your other children.

As an aside to the comments on this thread about lack of good info at scans, when I had my scan last year I went home and read my newly handed out maternity notes. Inside them was a whole heap of info about the syndrome DS2 has printed out from wikipeadia! Now my scan was done by the consultant of foetal medicine at our local very large city teaching hospital. At best it was insensitive in the extreme, and at worst perhaps highlighted a woeful lack of knowledge on their part.

So I am also sat very firmly on the fence with my head and my heart having very different opinions.

No, what I'm saying is every life is different. Disabled people in that respect (as in many others) are no different to everyone else. Some have great lives, some are fucking awful.

That's only your opinion though Buzz. It might seem awful to you, but how do you know it's awful for the disabled person involved? There are plenty of children at my son's school (it is for children with more severe disabilities) who can't walk, have limited control of their limbs, can't talk, can't communicate a huge amount and that most people would probably look at and say 'what a shame, their life must be awful etc' only, their lives aren't awful. How they live is normal for them and they live enriched and fulfilled lives.

I'm not saying no disabled people have awful lives, but who are we to judge that?

Its only my opinion that everyone is different?

midori - I sympathize and understand where you are coming from, but it is surely not controversial to say that some disabled people's lives are "awful", like the DS of that woman further up on this thread.

"That is what they know, so it's normal for them" does not make it better, imo. A baby born with physical disabilities will already have a harder life than most others, but a mental one like DS is something personally I will avoid for DC if I possibly can.

This is not to mean that people with DS live worthless lives. It doesn't mean that I wouldn't love my baby if he had DS. It just means that I would prefer a baby without incurable genetic abnormalities and therefore would avoid having one with DS if I possibly could.

I would have been made the decision not to continue aggressive treatment if my son had had huge brain bleeds during, or soon after birth. It was something that dh and I thought about a lot as we knew he was going to be very early. That is not to say we'd have switched off his breathing support for any bleeds ( he did have some ventricular flare which can indicate problems) but we wouldn't have continued treatment if there had been massive brain damage.

That is not to say that I this anyone who's made a different decision is in the wrong, I don't. We all made decisions based our our own lives.

It is sad to read but I am not surprised.
I made it clear to DH in both my pregnancies that I would not go forward with the pregnancy if something was wrong.

WorselM I doubt you'd find it so.easy to make that decision with a real baby involved.

coted'azur - my DD has an.incurable genetic.condotion, does that mean she is.some second class child? no.i

WorszelMs post read to me like she was talking about a real baby?