Lie, damned lies and statistics....about Down Syndrome

The last week has seen two more stories about Down Syndrome and abortion in the news. Firstly, the news that in Iceland 100% of babies with Down Syndrome are aborted, and secondly a programme in Australia about pre-natal testing and the “profound disability” that Down Syndrome is.

Where to start? Well, once more when I read the press articles I despair at the state of journalism. Yet again, almost every article is just taken word for word from another article. None seem to be capable of fact checking, or even using statistics correctly.

Iceland statistics

Let’s look at the Iceland scenario first. In Iceland it is widely accepted as moving towards eradication of Down Syndrome due to virtually 100% abortion rate:

Iceland headline.png

Here is my quick analysis of the 100% abortion rate statistic.

Before you even look into the calculation itself, it is important to note just how tiny the number of births in Iceland is. In 2015 there were 4129 births. In the whole country. That’s around 500 babies FEWER than born in the two Belfast maternity hospitals (RVH and Mater) in the same year. It’s incredibly low.

So, around 85% of women take up the offer of pre-natal testing. I’ve read some reports that of those, around 15% with a “higher risk” result choose not to pursue any additional tests. And then of the women left in the high risk category who go for further tests and get a positive result, almost all of them will abort, hence this “100%” statistic. But we can see that there are unlikely to be many women in this group at all. And therefore what may register in other countries (in the UK) as a 90% abortion rate actually equates to 100% most years. *see my workings at the end

To consider how many babies with Down Syndrome might be expected in Iceland, given their testing rates, let’s take the 4129 births (not the most accurate figure to use – actual pregnancies would be better, but this is all I have!) x 85% who choose testing, this means around 3510 women will accept the test, around 620 will not.

In a group of around 620 women not accepting pre-natal testing, we would only expect 1 baby with Down Syndrome to be born (assuming a rate of around 1 in 700). And of those women not going for tests, there is no consideration of their reasons – but we may be able to infer that a proportion of those may well be younger women who are less likely to have a baby with Down Syndrome and therefore may not see the point in going for the screening. In which case, we’d expect even fewer babies with Down Syndrome to come out of this group. Therefore you might get a few years with no babies born then a year or two with 1 or 2 babies. That’s all you would expect with such a small population. So the reason they have so few children born with Down Syndrome is actually because they have so few children born. Full stop.

Unbalanced information on diagnosis

That’s the information in Iceland’s ‘defence’ so to speak. The truth is though that the rest of the information coming out from this study continues to show the myths that surround Down Syndrome. Genetic counsellors and doctors claim that balanced information is given to parents who receive positive results but the quotes from doctors and geneticists doesn’t back this up. I know from my own experience with an ante-natal diagnosis (and in a country where abortion isn’t an option so wasn’t discussed explicitly) that the information is not balanced.

The problem with this is that when we have high rates of pre-natal testing, if unbalanced information is then presented to parents, then we are essentially eradicating Down Syndrome. And here in the UK with the ‘miracle’ NIPT coming into use which is non-invasive we’re expecting an increase in detection rates yet no improvement in the way information is provided. Parents are routinely given the diagnosis with the next available termination slot. The assumption is you will abort. Or you’re given a list of the associated health problems. No one has given me a list of health problems for my current pregnancy. And this baby has a 1 in 2 chance of contracting cancer, as we all do these days. Why are we giving information on potential negative medical outcomes to parents of children with Down Syndrome and not every parent?

The Icelandic counsellor quoted in the article said that we “have to look at Down Syndrome as a spectrum”. The Australian doctor featured in the 60 Minutes programme also referred to this “spectrum”. It’s not a spectrum. There are a very few cases of Down Syndrome, known as mosaic Down Syndrome, which result in only some cells in the body having a triple copy of chromosome 21. However, the vast majority of cases are exactly like our son Daniel, full blown Trisomy 21 where all the cells in his body have 47 chromosomes. Therefore it is incorrect to describe it as a condition that has a wide spectrum. You either have Down Syndrome or you don’t. Early intervention therapies can improve outcomes whereas the presence of other health problems or conditions like autism can make things more difficult (and often cannot be detected, as with the general population, antenatally). But there’s no spectrum.

So the problem that continues to follow countries with aggressive pre-natal testing for Down Syndrome is this notion that medics put out in these stories that they provide balanced counselling and information yet state falsehoods in the same sentence about what Down Syndrome actually is. How can a counsellor who describes a non-spectrum condition as a spectrum be providing balanced information?

The reality

Articles in the press, as evidenced by the comments of the Australian TV presenter on 60 Minutes, continue to use this language and then the comments on social media (do not read if you are sensitive, there are many vile people out there) often follow the vein of “It’s all fair and well showing us a cute 3 year old, but these people grow up to be rapists (yup, read that one recently) / profoundly disabled / reliant on full time care / huge complications / defective humans / have a horrible disease”.

Lots of readers of these articles seem to think that we, the families of people with Down Syndrome, including families with older children, teenagers and adult family members with Down Syndrome, are lying. That there must be hundreds of families with severely “profoundly disabled” (language used by the journalist in Australia) people with Down Syndrome who are hiding, not sharing their stories.

It’s like they’re crying out “We see your cute kid and hear your protests, but it’s not like this for everyone, show us the ones having a crap time, that will back up our decision to terminate these diseased individuals”.

The truth is, we’re mostly having a ball. We’re not lying. Yes, we have challenges, but here’s a news flash. EVERYONE HAS THEIR CHALLENGES. Everyone has crap happen them in life. The crappest thing in our lives actually isn’t Down Syndrome. It’s Crohn’s disease. An undiagnosed growth problem with our younger son. A father in law dying from a degenerative brain condition that has slowly taken him away from us over years. For others it may be financial problems. Cancer. Whatever. But it’s rarely Down Syndrome. This narrative is just absolute bullshit (excuse my language). It drives me mad that everyone else thinks they know how we feel.

Most people with Down Syndrome love their lives. I’ve been doing talks in a school to sixth formers about Down Syndrome since Daniel was a baby. The thing that blows their mind is this statistic:

99% of people with Down Syndrome said they were happy with their lives. 99%.

Let that sink in. In a world of depressed, anxious, stressed out, unhappy people there is a group of individuals who have a 99% happiness rate. This is unbelievable. And it’s not because they’re stupid or don’t understand anything about their lives. They truly feel that their lives are worthwhile, fun, enjoyable and they get up in the morning HAPPY about the day ahead.

The same survey (of over 3000 people in the US) showed 97% of siblings aged 9-11 loved their sibling with Down Syndrome, 99% of parents said they love their child with Down Syndrome.

Another study has shown that couples who have a child with Down Syndrome are LESS LIKELY TO DIVORCE than a couple who have a typically developing child.

So basically, we have happier children and are less likely to get divorced than the rest of you. HA! And do you know what? In my subsequent pregnancies I’ve hoped that I’ll be lucky enough to hit the jackpot again and have another child with Down Syndrome. This isn’t propaganda. This is me sharing my life. It’s bloody awesome having a kid with Down Syndrome. You’re missing out.

Poor suffering child...

Poor suffering child...

 

 

 

* using the 1 in 700 expected birth rate of babies with Down Syndrome in Iceland

4129 x 85% who test = 3510 women

3510 / 700 = 5 babies we might expect to have Down Syndrome. The abortion rate would need to be 80% (considerably lower than a number of other European countries) before even one of those pregnancies would be continued. An actual abortion rate of 90% like in the UK would result in, on average, one pregnancy being continued every other year i.e. alternate years it would look like a 100% abortion rate.