Why is it that people are so obsessed with testing for Downs syndrome, when there are so many other disabilities which cannot be tested for, that are far, far worse?

[wannaBe]

It baffles me.

When we fall pregnant we are offered tests, and scans, most, although not all of which relate to the detection of Downs Syndrome.

At 12 weeks we are offered a nuchal fold scan to determine the likelyhood of the baby having downs, and women over 35 are routinely offered anmio to detect whether the baby has downs.

92% of pregnancies where Downs is detected are terminated .

And yet there are lots of other disabilities, such as cerebral palsy, autism, other disabilities which cause learning difficulties, which cannot be detected in utero, but which can be much, much worse than downs.

So what is it about Downs that is so scary?

Or would people have far more stressful pregnancies if all disabilities could be tested for, and would they feel that they had to be sure their baby would be perfect?

I am a parent through adoption and fostering. Prior to that, I worked as a nanny and residential social worker and carer, and prior to that I grew up with friends and family members with various different disabilities. I can honestly say that there is a HUGE difference between parenting a child with disabilities (or any child) and simply working with/spending a lot of time with/supporting friends who have a child or children with disabilities. I didn't understand the difference until I jumped the gap - and that was going from fulltime sole charge nannying to parenting, so it was a smaller gap than moving from e.g. teaching to parenting. It was a big leap still from doing respite fostering to longterm.

There are a LOT of parents who have difficulty coping with their disabled child - just as there are a lot of parents who have difficulty coping with their non-disabled child. Take a look through some of the adoption magazines if you're that way inclined; there will always be children with disabilities needing adoptive families. Not being able to cope or choosing not to cope, however you choose to phrase it, is something more common than perhaps people would like to believe.

As a fostercarer I turn up from time to time with a nice cuddly newish baby who has a disability of one kind or another. People want to know the child's story and obviously I can't go into details. But it is shocking to me how many people instantly fall into massive condemnation of the birth parents for allowing their child to come into care. There's an assumption that the only children who are fostered are those forcibly removed by social services, and that they are only removed when the parents are monsters. Absolutely not true; less than 1% of my fostered children have come into care against the wishes of the birth parents.

How many of those babies would not have been born at all if antenatal testing had revealed the extent of the child's disability? Actually, most of them. Discounting the disabilities not testable for (coming from birth injuries, extreme premanturity, accidents after birth of inborn but invisible conditions), those babies were born to parents who either chose not to test, or did test but decided to allow their child to live even if they were themselves unable to care for the child in the future.

I've had parents come to me and tell me things like how their tests came up positive for a disability (SB), and how the consultant did not discuss it at all but immediately booked a termination for them. And then got very cross when the parents refused the abortion, contacted them frequently to try to persuade them. Now these same parents have a beautiful child with SB but feel unable to ask for help from social services because they chose to bring this child into the world. Shocking. I've also had parents tell me they have had terminations for disabilities I personally wouldn't consider to be severe. Quality of life - from the outside looking in it's easier to see a much lower quality of life than when on the inside looking out.

I'm not against testing. But I do wish all the options were given. That parents were first presented with proper, up to date, information about the condition being tested for, opportunities to talk to parents of children with the condition, leaflets prepared by a society or charity or organisation working for and on behalf of the children with that particular condition rather than a couple of paragraphs from an out of date medical textbook. Our children are not a collection of imperfections but children. I'd also like it to be possible for adoption and fostering to be mentioned and discussed openly without birth parents being condemned as monsters for not being able to parent the children they gave birth to. And I'd like to see support from social services and the NHS in place as soon as needed, rather than after months and in some cases years of struggle. But then I guess I'm a dreamer

mabanana maybe your friend just couldn't deal with the guilt of terminating a baby who was essentially just like her first child. I can imagine that having a child with a severe disability, and then terminating a pregnancy where the same disability is detected must feel a bit like wishing your first child wasn't there, iyswim?

Fwiw I can understand why someone might terminate for a progressive illness such as muscular distrophy for instance, and that is why I think preimplantation genetic diagnoses (pgd?) is a good thing. But I don't see embrios as children which is why I feel more comfortable with embrios being discarded as opposed to a baby which potentially could survive, being aborted up till term.

I haven't read the whole thread but I agree with you wannabe - that's why I didn't have any of the tests at all (i.e. not the Downs ones).

I took all the tests I was offered when I was carrying ds because for us, there was a much higher risk of disabilities, including spina bifida and heart problems. It was a scary time and I needed to know what was going on, as far as it is possible to know. Not sure what I would have done if anything had shown up - I couldn't think that far ahead.

I wouldn't have had amnio, though, because of the risk of losing the pregnancy. Fortunately for me, all the tests came back as OK as they could tell at that stage. I did understand that a 1/1,000 nuchal fold result didn't guarantee my baby wouldn't be that 1/1000.

I don't think anyone who would consider a termination for condition x or y is necessarily criticising an actual child with those conditions.

I'm pro-choice so don't have any fundamental objection to abortion. And I see a very clear distinction between terminating a pregnancy and killing an actual live human being. We celebrate our birthdays, not the date of our conception. So many sperm don't make it to the egg, so many eggs don't make it into embryos, so many conceptions don't make it into live births - it's a miracle any of us as individuals exist in the first place.

Has anyone seen what Nicolaides (sp?) is saying about the risks of amnio causing the loss of a healthy baby being far higher than was previously thought, btw? Because that's why I don't think I could have had amnio - the risks of losing the baby, whether or not the baby had DS or anything else, would have been too high for me.

And remember when you're talking to a parent of a child with SLD;s they love their kid every bit as much as you love yours. So it does matter how you talk about them.

Yes! People with SLDs have just as many feelings as anyone else, believe it or not! Most can also see and hear just fine, including everything you say. You wouldn't say, 'She has such a pretty face, too bad she's so fat' to someone who was overweight, so try to refrain from applying statements like, 'It's a good thing she's so pretty, since she'll never be that bright' to people with SLDs.

GREAT post, Nineyears!

I think it can be hard to understand the love parents feel for a child with severe SN - to outsiders it might seem that the child can't give much back. They may not be responsive in the way that NT children usually are and they may not be developing, learning and growing as an NT child would. A couple of years ago, I would not have understood that the parental love can be just as intense. I have learned it from reading posts on Mumsnet and also from spending time with my friend and her severely disabled DD with CP.

oh but riven "it's a shame" I have lost count of the prats that have said that, whilst dd sits there looking beautiful.

i would be very pissed of if I did "confide" in a teacher and they used it to make a point on mn

don't give up hope riven, dd has started to say some words

i wouldn't confide in a teacher unless she were a personal friend.

i'd confide in other SN mums first.

Riven there will always be people who will talk over others with disabilities and IMO it is because of fear and ignorance. My sister said to me a few months back that she didn't think I could make friends easily because people don't know how to talk to me. because they can't make eye contact, because I have a disability which they can't relate to, they wouldn't know how to talk to me, and this from someone who is family.

Someone wrote a book called "does she take sugar" which apparently is all about this. - haven't read it though.

aw Riven
so jealous..
my DS2 is profoundly disabled but I don't get a blue badge as he is able bodied.

The thread is tiring to read but done most of it.
the thing that leaps out at me is the huge misconceptions about siblings.
My DS1 is old enough to talk about his younger brother and it is so interesting to me. He sees DS2 as his perfect human. Endlessly fascinating, he has no malice, no artifice, no cunning and no social face. He is who he is. If he likes you he hugs you , if he doesn't he ignores you (heaven! .
Ds1 judges people entirely ( and without apology) upon their abilty to recognise his brother as a really cool human being - he calls DS2 his bullshitometer.
DS1 is a very fine young man - smart, serious and empathetic. Personally I think he was always fab but watching and loving his brother has given him qualities that a life of reading and normality never would.
He has just won his schools art prize. He came home to tell me. We talked about this thread.
he said if he paints well then its his brother that has helped him see.
I thought that was nice.

He also said some posters couldn't find their arses with a map and a torch but thats another matter

Pagwatch - "he said if he paints well then its his brother that has helped him see."

I honestly think that is one of the most beautiful things I've ever heard - you must be very proud of your boys.

I'd just like to add one thing to my earlier posts:

There are clearly thoughtless, stupid people in the world who would say some of the offensive things all of you with children with disabilities have mentioned.

However, please don't think that all the people who support abortion on demand before 24 weeks for whatever reason, or all those who might choose to terminate for a disability, are the SAME people.

Some of those who would choose to terminate are also the stupid, ignorant people who would say such things to you.

Some of them are not.

I support abortion on demand for whatever reason up to 24 weeks, and I have also terminated a pregnancy at 20 weeks, not without much pain and grief, for reasons to do with the baby's health and chances of survival.

However, I hope I'm not arrogant enough to think that my opinion or point of view is shared by everyone in the world, and I know that there are people, many of them on this thread, who would not have made the decision we made.

And I would never dream to assume that people with children with disabilities or SN feel, or felt at any point, the way I do. Nor would I say anything so crass to someone with a child with disabilities.

It's a deeply personal choice. I respect the right of everyone to make that choice. I wish the world was kinder to and about people with disabilities, and that the social stigma was eradicated.

But I will continue to support the right for every person to make that choice.