Guest post: "I fear the eradication of Down's syndrome"

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On the day Natty was born, I wasn't sure I was up to being her mother. Ignorance took over. Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.

In eight years, we have come so far as a family, risen to challenges, endured heart surgery, made adjustments and learnt to slow our pace and live in the moment. I wouldn't change any of it. I am a better person now. The pregnant woman I was, whose heart was filled with fear at the words Down's syndrome, now shakes her head in disbelief.

I've been bleary-eyed over research for this post. And, in fact, as I rose at 5.30am, drafts of what I would write very much in my mind, there was one member of our busy household who noticed my pensiveness. Natty drew me down to her face level, looked intuitively at me and said 'It's OK Mummy.'

I held her so tight, and made a silent promise into her warm hair, a promise that I would do my best to convey her worth to the world.

Because while we praise advances in healthcare and women's control over their reproductive lives, there is an important ethical debate I fear is being overlooked.

A new non-invasive prenatal test (NIPT) could help identify women whose babies have Down's syndrome. The test involves taking a sample of blood from the mother and it uses this to detect the baby's DNA.

At the moment, the NIPT test is available privately, but it could soon be rolled out by the NHS as part of their population screening programme. The UK National Screening Committee has just ended consultation over offering it - it can only be added to the programme if there is a beneficial reason for doing so.

However, there is no health gain in diagnosing Down's syndrome during pregnancy. It cannot be treated or prevented. It simply allows parents to decide whether to continue a pregnancy to term or not.

There are ethical implications to genetic testing, but no easy answers. The UNESCO International Bioethics Committee says that genetic testing can offer women the right of choice. However, it could also become routine that ill or disabled children are not to given the choice of birth at all.

So giving women choice whilst not devaluing individuals with Down's syndrome is a fine line to tread.

We must ensure that parents are given unbiased, updated information in order to make informed choices. There can be no assumption that those with Down's syndrome are not compatible with life - or worse, that they are too costly to have a right to life.

We are promised that the new NIPT can allow parents to be prepared for their baby's arrival and that it will not increase termination rates. However, in countries where Down's syndrome screening has been standard for years, termination rates stand at almost 100%. Are these tests being sold as a kind form of early euthanasia to trusting expectant parents - and will a whole genetic group of people be targeted in the process?

The support networks we have in place simply aren't as sophisticated as the genetic tests being considered. We must explain test implications and outcomes, support those who choose a termination and give equal care to those who choose to continue their pregnancies. We need charities that aren't partnered with the test manufacturers.

If parents are rushed into terminations, or asked repeatedly if they would like to end their pregnancies, then we are certainly sending out the message that some lives are worth a great deal less than others.

We need the screening committee to welcome input from parental groups and self-advocates. We need to match up the wonderful examples of best practice by bringing committed midwives and learning disability nurses together, and we need to accept the value of difference.

Society has come a long way from the days when children with Down's syndrome were institutionalised with little or no love, educational support or quality healthcare. We hope Natty will find employment she enjoys, have a partner of her choosing, a social life fuller than ours and live a long, healthy life independently with support.

I cannot bear to think that one day I will have to explain to Natty why others think her adored life is not worth living, or even justify her very existence. But here I am, already doing just that.

And, most of all, I fear that one day I will be grieving, as others celebrate the eradication of all children like my beautiful daughter. No Natty, maybe it's not OK.

The BBC is making a documentary about Down's syndrome, which Hayley Gowleniowska is contributing to. If you are affected by the tests and interested in an initial off-the-record research chat, please contact Clare at [email protected].

I think Hayley said it best:

We must ensure that parents are given unbiased, updated information in order to make informed choices.

dixie

Lastuser - if you are genuinely concerned about consent read up on the mental capacity act. It is all set out there.

It is not unusual at all for people with DS (specifically) to have sexual relationships.

As for looking for an institution - they're being closed (should have gone by now). People with LD's live within the community.

I'm not annoyed with you, Dixie.

"As for intelligence, it's really not one of the first things you think about when you hear your child has sn. Quality of life and pain tend to be at the top of the list"

Well, maybe it's not one of the first things you think about, and we are talking about Down's Syndrome, not any and all 'special needs'. As zzzz said downthread, very low intelligence is people's main problem with DS. It is possible for people with DS to have a reasonable quality of life (with a lot of support) and most are not in any pain, from what I understand.

If you want more babies with DS to be born, you need to address the intelligence problem and show people that it is maybe not as terrible a fate as they imagine it to be to have a son or daughter who will never reach the intelligence of a small child, even as an adult. Sticking your head in the sand and saying "Oh intelligence doesn't matter" isn't going to convince anyone to keep a fetus with Down's Syndrome.

"Neither of us feel the need to judge people on their iq or qualifications or anything. We tend to judge people for who they actually are"

I don't judge people on their intelligence and intellectual ability, education etc either. But again, we are not talking about judging people with low IQ. We are talking about the choice to not bring into the world children with genetic abnormalities that severely limit their intelligence, cause health problems, and shorten life span.

This is not a controversial topic in the world outside of this thread, as can be seen from the termination of 94% of all fetuses with Down's Syndrome.

Eh? How do you define 'intelligence of a small child'? In any case DS is reasonably often accompanied my MLD's rather than SLD's.

What a strange (& dare I say it ignorant - as in lack of understanding of the reality) way of looking at it.

Terrible, isn't it? I should know by now that there is little chance of a rational conversation with you, but I still try. Hope springs eternal and all that.

The degree of learning disablity varies widely in DS though - that's a fact.

Emmanuel Bishop is unusual www.takingonthegiant.com/2014/01/23/bishop/ but the other extreme of very severe LD's is unusual in DS as well.

I'm trying not to be offensive in the words I use but you lot jump on to me whatever I say, picking on a word here or there rather than what I am saying which is:

If you want more people to keep fetuses diagnosed with Down's Syndrome, you need to address the issue of very low intelligence and convince people that it is not as terrible outcome as they believe.

Devilish - I would not call an IQ of 50-60 a "moderate" learning disability. Until late-1980s when terminology was revised, the range of 67 or below was called "mentally retarded" in IQ classification.

"Choice requires you to use judgement. "

Yes, and all those women choosing to abort fetuses with DS are clearly using judgement while exercising their choice to terminate their pregnancies.

And?

People with IQ's of between 35 to 50 are defined as having moderate learning disabilities.

So 51-60 is above.

Profound - = IQ less than 20
Severe IQ 20-35
Moderate = IQ 35-50
Mild = IQ 50-70

So according to your assumed range (which is too narrow - the degree of learning disability varies widely in individuals with DS) people with DS have a mild learning disability in terms of IQ.

And I'm not jumping on you - but your assumptions about the level of learning disability in DS are simply wrong. I've never met anyone with DS who has the degree of learning disability that ds1 has for example. Moderate or mild learning disability is most likely with occasional people with severe LD's or normal intelligence.

The IQ of people with DS is increasing (now they're actually being given an education) but approx 40% have an IQ of 50-70% so 40% have a mild learning disability. Of the remaining 60% the majority fall into the moderate learning disability category.

yeah but what does IQ mean in a practical sense? what can a typical person with an IQ of 50-70 be expected to be able to understand, what kind of tasks can he/she do, etc?

Well they're not a vegetable

I know people with DS who are artists (far better than me), who are photographers, who enjoy computer courses, who work in a pub, who can travel to & from work independently & others who need a carer to go out & about. They're all way above my son who has SLD's in terms of daily living skills.

What are you expecting them to do? I doubt they're going to be a City lawyer if that sort of thing is important to you

When I used to manage and train in retail, one of the men I mentioned earlier used to be able to do a shift as well as the uni students did. He used to replenish and date check, deal with customers. He lived on his own and went out of an evening.

The was a woman who didn't have ds but had autism/mld and she ran a whole department and scored highest for our area!

Both of them had gone to special school.

I know that's definitely not what xenia wants for her children, but let's face it loads of different people work in retail.

I don't know if either of them was having sex, nor did I want to know

I haven't posted on here to deter people from having abortions any way. I'm just fed up of people feeding the ignorance and prejudice. It makes me really angry and you have to question why a highly intelligent person would want to judge and poke at someone learning disabilities and their parents in the first place.