A World Without Downs Syndrome

Downs Syndrome is being discussed at the moment because there is a newer test which far more accurately predicts whether a baby has Down's Sydrome. This means there will be fewer women who will need to undergo the amniocentesis procedure which carries a small but significant risk of miscarriage.

It is not only Downs that is screened for. Looking at the NHS site, I see that there is screening for spina bifida, sickle cell anaemia, thalassaemia and other haemoglobin disorders, anancephaly, open spina bifida, cleft lip, diaphramatic hernia, lethal skeletel dysplasia, Edwards Syndrome, etc.

Some of these conditions are less serious and can be treated at some stage but others may cause death in the womb or shortly after birth, or profound physical and/or mental disabilities and a much shorter lifespan.

A mother can decline the tests if she wishes. If a baby is found to have one of the more serious conditions, a mother is provided with full information and counselling as to whether she wishes to continue with the pregnancy. Some women will choose to have the baby, others will choose a termination. I think it should be wholly the decision of the parents since they are the ones that will have to possibly spend years watching a child having painful and invasive procedures. Throughout this, they need to stay strong for their child and to cope with all the day-to-day practical difficulties and emotional turmoil that having a seriously ill child is likely to cause. Parents without external support may also have no option but to concentrate on a profoundly disabled child, at the expense of another child or children. I am sure the majority of parents do not opt for a termination without a great deal of soul-searching and sadness but it must have that choice because it is them and their family who will be affected.

I declined all tests when I was pregnant on the grounds that, even if a problem was found, I would not have a termination.

Screening for cleft lip? .dear God , what next, deafness?

Can anyone tell me why it is legal to kill a baby in utero but if I get motor neurone disease I cannot ask someone to help me die and they risk prosecution!

Back at the very begining of the 1970s I was was working in a care facility for children with learning disabilties.
There were two children with Down's syndrome who were not severely affected and in terms of care they just needed the sort of support a rather younger child would have. No major "behavioural" issues which some of the other children did have.

One residents father was the local GP. This would not happen nowadays but there was no good reason why that boy needed to be in residential care.

The 11 yr old girl should not have been there either, she was fiesty and funny but she had been placed there presumably because the parents could not "cope". (with the idea of a disabled child) rather than her behaviour.

Very few parents get away with "dumping" their disabled children nowadays unless their behaviour or care needs are so difficult to manage that the whole family suffers. Actually these days it's hard for parents to get any decent respite care for children with very intense care needs.

I also encountered a boy with Downs syndrome whose parents were Greek and then there was quite a big family stigma about "imperfect" children in the family. It was considered this might affect the families ability to make a good marriage in future with that "condition" in the family.

I hope people are more enlightened now.
Fortunately there is a lot more adoption of disabled children going on.

2old2 A very good point indeed.

A calm and sane post Eloethan as you say it is a new firm of testing which has changed the possibilities for expectant parents. Nobody is talking Hitlerian eugenics but the very real choices open to them. Some of the conditions are very severe indeed, even if the baby makes it to term he/she may survive only a few hours, or may be so severely handicapped that they are dependent on full nursing care for the rest of their lives, almost certainly dependent on a succession of surgical procedures and without any hope of a life approaching what we might regard as "normal".
We are not just talking about handicapped children either, but adults who may never be able to live independent lives. Our cousin's daughter , now in her 30's has swum in the special Olympics and is at the "better"( for want of a better word) end of the DS spectrum, but she will never be able to earn a living or live independently, she has no siblings and a mother well into her 70's.
The thread, like the TV programme while prompted by the issue of the "new " test has IMHO moved on to a more emotive and emotionally charged area.

Typo!! A new FORM of testing - sorry!

Yes, good post, eloethan.

If we were any other species individuals that were not viable as independent adults (singly or within a herd) would simply not survive. But we aren't any other species so it's complicated. I do find thinking back to Raw Nature helps clarify things a little bit for me. Not completely, obviously.

Whenever I see the thread title I wonder: "Would a world without Downs Syndrome really be all that bad?" Perhaps it would; perhaps it wouldn't. It'd be best if we could find a way to fix the genetic blip before it caused any problems.

I didn't see the programme, but gather that Sally Phillips is against abortions that are carried out because the baby will be born with Down's Syndrome.
If we accept the basis of the 1967 Abortion Act is the woman's right to choose, I don't think we can say that a woman can choose abortion because she already has two children and doesn't want a third, or that she can choose abortion because she's only 17 and isn't ready to be a mother, but Downs, or other congenital conditions, are not an acceptable reason for a termination.
My personal feeling is that an abortion is a tragedy for all concerned, but I wouldn't deny any woman her right to make that choice for herself.

Janeainsworth I think it was a bit more than giving the mother a choice. Sally Philips looked at Iceland where the condition has been almost 100% wiped out and I believe the feeling was that it was a bit more complex than just offering the choice it wasn't made clear how Iceland had achieved this except that 100% of mothers offered the choice, had aborted Now 100% in any subject is blooming unusual so there must be questions as to whether there was a carrot and stick approach or some kind of coercion to 'help' these families ALL decide to abort

2old2 -a very good question

I think the world would be a sadder place without Downs this constant striving for perfection is our downfall

Constant striving is also why fewer mothers die in childbirth, fewer babies die in their first year of life, fewer people die of polio, malaria, diphtheria, measles.....

You name it, deaths from formerly fatal diseases and conditiions have fallen because of our "constant striving". Perhaps it's not striving for perfection but striving to reduce suffering. After all, we'll never reach perfection as anyone with any sense knows, if only because life is a constant battle against other forms of life.

I hate it when people scoff at stuff like constant striving. Constant striving is what life, all life, is about.

Bluebell you seem to be implying that Icelandic women are coerced into having terminations.
I agree that would be wrong.
I don't believe it happens in this country.

It is an awful choice to have to make, I can not get away from that thought.
Having taught a range of children with Downs I am under no romantic illusions that all are cute , funny and talented. However a choice at an earlier stage of pregnancy is an improvement. How can you have a termination as late as 27 weeks when younger premature babies struggle to live at that stage?

The mother's description of her termination was horrendous and I didn't think that happened so late. I was.shocked and probably somewhat naive.

The youngest mother of a Downs girl,I knew, had been 18 and totally unprepared for her birth. The girl was also on the autistic spectrum and hard to get through to. When she grew older she discovered dance through the Birmingham ballet doing a project with her special school. A new girl.was born and a talent discovered for her, for that moment in time.

This is not an easy subject to be black and white about.

You can't 'wipe out' a condition like Downs. It's not like the 3-parent mitochondrial situation where future generations will not carry the faulty genetic material.

Children will continue to be conceived with an extra chromosome and decisions will have to be made. No parent should feel coerced into having a child with a genetic condition when an alternative exists - to abort while at the gestational stage.

Neither should any parent feel coerced into aborting if they want their baby.

(Sorry) each child

Do not know what happened there. I was trying to say many couples want to adopt specifically Down Syndrome babies/children when we adopted our 3 we were amongst 5-6 approved adopters fighting over the children

Iceland isn't a very good example, I don't think. Their entire population is only 300,000 so they will have very few cases of Down's diagnosed per year. If there are, say, three cases of Down's in a year and all decide to terminate, then that is indeed a 100% rate. But if one mother decides to keep her baby then the rate changes to 66%. Iceland isn't a big enough sample to be significant, I don't think.