Why has the prevalence of Down’s syndrome births increased in the US, but not the UK?

It is not much of a surprise to see that the number of children born with Down’s syndrome has increased in the US, according to a recent study. What is surprising is the rate of increase. According to new data from the Centers for Disease Control and Prevention published in Pediatrics, “From 1979 through 2003, the prevalence of DS at birth increased by 31.1%, from 9.0 to 11.8 per 10000 live births in 10 US regions.”

That is an enormous increase. Consider that, according to UK statistics, the number of children born with Down’s syndrome in the England and Wales decreased 1% between 1989/90 and 2007/2008, while the number of diagnoses increased 72%.

Comparing with data on total births from the Office of National Statistics we find that the prevalence in the UK in both 1990 and 2007 was 10.7 per 10000 live births.

One of the reasons given for the increase in US rates is higher maternal age, which is certainly the major factor in the increase in diagnoses. But why is it that the prevalence of Down’s syndrome live births has increased to such a degree in the US, while remaining flat in the UK?

An obviously explanation would be a lower rate of abortions in the US, but reports in the US and UK (and elsewhere) are pretty consistent in showing a 90+% termination rate. The only other thing that springs to mind is that the US figures span 1979-2003 while UK figures span 1990-2007.

Doubtless there was an increase in the quality of care and medication between 1979 and 2003 that would have contributed to greater numbers of children with Down’s syndrome making it to term. Likewise between 1990 and 2007. Could the rate of improvement in quality between 1979 and 1990 have been higher than between 1990 and 2007? Quite possibly. I’m not sure that would be enough to explain the variation between US and UK figures, however.

UPDATE – WTI was honoured with a visit from Frank Buckley, CEO of Down Syndrome Education International (if I’d known he was coming I’d have tidied up a bit) who points out that since the early 1990s the trends are strikingly similar.

These trends appear to support the suggestion that there were dramatic improvements in the US between 1979 and the early 1990s – but also suggest that there was a considerable decline in the UK between 1990 and 1995. They also indicate that the result you get depends on where you start measuring. – UPDATE

Recent news and views

We’ve been really busty with various work, home, and illness-related issues recently. Here’s some recent news stories I haven’t had time to blog about:

Athletes with intellectual disabilities to compete in 2012 Paralympics – The Times

Great news. It’s about time intellectually disabled athletes stopped being punished for the crimes of the intellectually able but morally corrupt.

Mentally disabled actors are victims of modern ‘blacking-up’, says campaigner – The Guardian

An interesting perspective, and one that I have some sympathy for.

Drive to improve pregnancy scans for Down’s syndrome – Daily Mail

“Guidelines for scans that assess the risk of Down’s syndrome in later pregnancy are being drawn up in an attempt to improve their accuracy.” Good. See here and here for previous posts about the importance of accuracy.

Sarah Palin: my life with a Down’s syndrome child – The Times

An interesting read, whatever you might think about her.

Progress towards possible Down’s syndrome treatment – BUPA and numerous other sources
“Medicines that target specific nerve cells in the brain could reverse poor mental function in people with Down’s syndrome, according to new research.”

Raoef Mamedov’s Last Supper

Click the picture for the full size version.

A few months ago I stumbled across a blog post about a depiction of The Last Supper by Russian artist Raoef Mamedov. I was recently reminded of it by a not-so eloquent discussion and decided to post it here.

It is a really fascinating work of art, although there are some not-so-hidden messages that are not entirely positive in terms of attitudes to disability and religion. All in all though I find it equally captivating and challenging.

Make of it what you will.

In defence of Simple Jack

Amid the furore against Tropic Thunder and the film-within-a-film Simple Jack last year I maintained that “the protesters against Tropic Thunder appear to be either misunderstanding or willfully ignoring the fact that Tropic Thunder is a satire in order to get their point across”.

In Simple Jack, Stiller’s character from Tropic Thunder tries to prove he is a serious actor by playing a disabled character. David Tolleson (executive director of the National Down Syndrome Congress) described the portrayal as “shockingly awful”, missing the fact that that was, in fact, the point.

The point of Simple Jack was to lampoon vacuous actors who see playing a character with disability as proving their credentials as an artist.

With that in mind, I draw your attention to this article about Filipino actress Niña Jose. I had never heard of Jose before reading this article, nor do I expect to again.

From the article we learn two key things about Jose:

• “My boobs are real.”

and

• “I just don’t [want] to limit myself to sexy roles. My dream role? I want to play someone who [has] Down’s syndrome. Super challenging.”

I don’t think I need to add anything else at this juncture.

NHS figures on Down’s-related terminations are “wholly inaccurate”

The Daily Mail reports that the official number of terminations resulting from an ante-natal diagnosis of Down’s syndrome according to NHS statistics is roughly half the true number.

Professor Joan Morris of the National Down’s Syndrome Cytogenetic Register said: ‘The Department of Health’s figures on Down’s terminations are wholly inaccurate”, noting that over the last four years fewer than half of abortions of babies with Down’s syndrome were recorded properly.

“Between 2004 and 2008, a total of 4,777 abortions were carried out on foetuses with the disability, with 1,032 terminated last year, it said.

In contrast, Department of Health figures show that between 2004 and 2008, a total of 2,168 Down’s abortions were recorded, 436 of them last year.”

The NDSCR’s figures are accurate since it is notified of every diagnosis of Down’s syndrome. In comparison, the NHS’s figures only relate to abortion forms. The issues is significant since, as I noted earlier this year, the NDSCR’s funding is due to expire in March next year.

As Professor Morris explains:

“Our register is important because it gives a clear picture of what is happening in terms of the trends for Down’s, and ensures that proper health care provision can be made for the babies born. When we close there will be no way of getting accurate data, as you cannot rely on Government statistics”.

Research contradicts Down’s syndrome stereotypes

Anyone who’s had anything to do with Down’s syndrome will have heard the stereotypes about people with DS: they’re very loving; they’re very happy; they’re very stubborn. G had been alive less than five minutes before I was told by a paediatrician that “They are very happy babies”.

Is there any truth in the suggestion that all people with Down’s syndrome share certain personality traits?

Recent research would suggest not, according to a blog post I just stumbled upon written by Pierce J Howard PhD, Managing Director of Research and Development at the Center for Applied Cognitive Studies in Charlotte.

Howard and his colleagues have taken their personality assessment for adolescents, and translated it into a form to rate the personalities of people with Down’s syndrome. The early results suggest that people with Down’s syndrome – or Down’s syndrome individuals (DSIs) as the research put it – exhibit more varied personalities than developmentally typical individuals (DTIs).

“The standard deviations for N, E, O, and A are higher among DSIs, suggesting that there is more variability in these four areas than is found among DTIs—more extremes in behavior. More extremely neurotic individuals, and more extremely calm ones; more extremely extraverted as well as more extremely introverted; more extremely imaginative and more extremely literal; more who are extremely deferential, and more who are extremely defiant, in comparison to the DTIs.”

As Dr Howard goes on to explain, “the only supertrait that suggests LESS variability among DSIs is C, suggesting that DSIs as a group show less extremely ambitious behavior, as well as less of the opposite”. It would be interesting, as Rickismom notes in the comments, to research whether that potential lower will to achieve is natural or the result of “a society-induced resignation or hopelessness”.

The mean responses do suggest that people with Down’s syndrome are more likely to exhibit certain personality traits such as:

– “a somewhat lower level of creativity, complexity, and comfort with change”
– “a noticeably lower preference for perfectionism, focus, ambition, concentration, and methodicalness”
– “a somewhat stronger tendency to defer to others and be comfortable in the background”

However, when it comes to the big stereotype, that of happiness, the research suggests that people with Down’s syndrome are no happier than anyone else:

“the means on N and E show no difference between the DSIs and the DTIs, suggesting that levels of happiness (positive emotions dominating negative emotions) are similar.”

As Dr Howard explains, if continued research supports these early results it could have a significant impact in the way in which support services are provided to people with Down’s syndrome.

“Historically, people have assumed that DSIs were all similar behaviorally—that they all like repetition, were all moderately sociable, and so forth. This data clearly challenges those assumptions. Hence, among DSIs, we need to take individual differences into account with respect to career choices, roles in group homes, managing conflict, teaching/learning style, relationship management, motivational strategies, therapy modes, and, in short, we need to employ the same individual difference sensitivities with DSIs that we use with our developmentally typical friends, family, and associates.”

JFK and the National Plan to Combat Mental Retardation

I am in Boston this week with work and with a bit of spare time on my hands today went to visit the John F Kennedy Presidential Library and Museum.

It is a fascinating and thought-provoking museum that does well to squeeze in all aspects of the achievements of not Just JFK but the other members of the Kennedy family as well.

With so many achievements to cover I was surprised to see the inclusion of children’s health issues and mental disability. While I am well aware of the effort that JFK’s sister, Eunice Kennedy Shriver, put into supporting people with mental disabilities – including the Special Olympics – I was not aware that President Kennedy had also gone out of his way to promote better treatment for children with mental disability.

As this information from the Arc of Massachusetts indicates, President Kennedy in fact drove a plan to create A National Plan to Combat Mental Retardation in the early 1960s.

It is a testament to how important this issue was for President Kennedy that the National Plan and its impact was given prominence in museum alongside more celebrated issues such as the civil rights movement, the Cuban Missile Crisis, the space program, and of course his assassination.

I would definitely recommend a visit to the John F Kennedy Presidential Library and Museum – it is great value for money and provides a fascinating insight into the life and legacy of a truly inspirational man.

“We can say with some assurance that, although children may be the victims of fate, they will not be the victims of our neglect.”

Remarks Upon Signing the Maternal and Child Health and Mental Retardation Planning Bill

Human beings are not capable of deciding whether to continue with the pregnancy of their unborn child based on statistics and percentages

The UK’s coverage of Down’s syndrome screening and statistics continues following the publication of a report in the BMJ.

Tom Shakespeare, research fellow at the Institute for Policy and Practice at Newcastle University, has written an interesting and provocative piece looking beyond the statistics to the human cost of screening for Down’s.

I started off submitting a quick comment but it quickly became the spelling error-packed diatribe I have been considering writing for some time. I’m not sure where I am going with this in all honesty, but I think I am building to something here…

Having been through the process of dealing with a pre-natal diagnosis of Down’s syndrome I have come to the conclusion that human being are simply not capable of deciding whether to continue with the pregnancy of their unborn child based on statistics and percentages. I agree with Tom that we need more research into the long-term emotional consequences of these difficult decisions but would go further and suggest that we need to radically rethink how we as a society approach screening.

In my experience, johnthewayne is correct: “we test for downs, not because it is the worst thing in the world, but simply because it is possible”. The result is that parents are supplied with information that is supposed to be “accurate” but tells them nothing.

These were ours: “a one in 11 chance based on the nuchal fold; one in 4,000 based on the blood; one in 76 in total, compared to one in 300 on average for my wifes age; a 95% accuracy rate for the combined test, compared to 85% for just the nuchal fold measurement; a one in 100 chance that the next test could result in a miscarriage.”

If you think you know what you would do faced with these statistics think again. You cannot possibly know until it is your own child you are deciding the fate of.

Then there is the fact that the effects Down’s syndrome are a spectrum. Will your child have heart problems, thyroid problems, gastrointestinal problems, hearing problems, leukemia, hypotonia? None of the above? How severe will the learning impairment be?

The screening process asks all of these questions and provides answers for none of them, and yet we are expecting would-be parents to use the results of screening to decide the fate of their unborn child. Counselling can help parents understand what Down’s syndrome is, but it does nothing to help them make the most important decision in the life of their child.

In this context it does not surprise me that so many people decide to terminate following a pre-natal diagnosis (aside from the fact that they may decide they do not want to or not capable of raising a child with Down’s syndrome, which is an entirely valid response).

In my experience the decision to terminate is the only choice facing parents that enables them to regain control of the situation. As we considered out options we were drawn almost inevitably towards termination by the fact that it was the only decision that provides a definitive outcome, rather than more chance.

I say almost – in the end we decided that Downs syndrome, in and of itself, was not enough to justify abortion, and that we would take that chance. Our son is now one year old and healthy and happy and I have not regretted our decision for a second.

However, my desire to rethink the screening process is not based on ensuring more parents take the same decision as us – that is for them to decide – it is a desire to ensure that the process itself reflects the severity and long-term implications of the decision itself.

UK press wakes up to Down’s syndrome statistics

Back in April I reported on the latest statistics on Down’s syndrome births in England and Wales from the UK’s National Down Syndrome Cytogenetic Register, noting that I hadn’t seen any reporting of the latest statistics in the mainstream press.

Six months, and an article in the British Medical Journal, later and Down’s syndrome stories are in all today’s newspapers. As Simon Barnes notes, “it seems that we are in the middle of a veritable plague of Down’s syndrome”.

Take your pick:
The Telegraph: Three babies aborted every day due to Down’s syndrome
The Independent: Big increase in number of Down’s pregnancies
Reuters: Abortion of Down’s babies rising
The Press Association: Older mums link to Down’s increase
The Times: Surge in Down’s pregnancies is matched by surge in terminations
The Daily Mail: Down’s syndrome cases soar as women delay starting a family
ScienceDaily: Increase In Down Syndrome Offset By Better Screening
The Telegraph: Increasing number of women being diagnosed with Down’s syndrome babies
The Guardian: Delayed motherhood behind increase in Down’s syndrome babies, research says
The BBC: Steep rise in Down’s pregnancies
The Guardian: Steep rise in Down’s syndrome pregnancies
Daily Mirror: 71 per cent rise in Down’s syndrome diagnoses
Channel 4: Down’s syndrome cases increase

I haven’t read all of these, obviously, but those that I have read offer little beyond the statistics that have been generally available for six months. Congratulations, I suppose, to the Queen Mary college press team for getting the stats reported.

UPDATE – I have now read them all. Some interesting points from The Times story:

“Researchers found that the proportion of cases diagnosed antenatally in women under 37 has risen over the time period, from 3 per cent to 43 per cent. However, among older women, a consistent 70 per cent of affected pregnancies were diagnosed antenatally.”

“Professor Morris added that further research was at risk because funding for the national register, provided by the Healthcare Quality Improvement Partnership, was guaranteed only until March 2010.”

“One woman, who chose to have a termination after a Down’s diagnosis, said: “Everybody says they know what they’d do in that situation. But you don’t. You never know until it happens to you.””

– UPDATE

There are also some stories that go beyond the statistics:
Daily Mail: Older men five times more likely to father children with birth defects
The Times: Women’s choices on Down’s syndrome screening must be informed ones (commentary from Carol Boys of the DSA)
The Guardian: The upside of Down’s syndrome (More commentary from Carol Boys)
The Telegraph: The Fergusons: living with Down’s syndrome
The Telegraph: Belinda Benton: I had healthy baby despite Down’s syndrome risk
The Times: Actually, having a child with Down’s syndrome is no big deal

The last one, written by the aforementioned Simon Barnes is a really concise, well-written commentary:

“My second child, Eddie, 8, has Down’s syndrome and, you know, it’s not that much of a big deal. It’s remarkably like being a parent, as a matter of fact. All you need is unconditional love,” he writes… He’s a valid, viable, useful and cherished member of his society: why on earth should he be anything else?”

Motivational

Robert Pio Hajjar is a motivational speaker and founder of IDEAL-WAY.ca, an Ontario-based organisation focused on educating people about intellectual disability; providing food, clothing and household goods to low income individuals with disabilities; and providing art and literacy programs for for people with intellectual disabilities.

Oh yes, and he has Down’s syndrome. As he says: “When I was born 29 years ago, the doctors told my parents to put me away and forget about me. They said I would not be able to walk, or talk or do what other kids do. They painted a very sad picture of what my life would be like…. Don’t you think the doctors would be surprised to see me now?”

Here’s a video of him opening the Best Buddies Regional Conference 2009 in Hamilton, Ontario.