I recently wrote about the theory that an increase in the quality of care and medication had contributed to the increased number of children born with Down’s syndrome in the US and UK (along with higher maternal age of course).
A recent study of survival rates of children with congenital abnormalities backs that up. According to a Medscape report based on a story in the Lancet, “medical advances from 1985 through 2003… increased in the likelihood of survival.”
While that seems pretty straightforward another finding of the study has me perplexed.
“Pregnancy termination played a significant role in boosting survival rates. ‘The proportion of terminations of pregnancy for fetal anomaly increased throughout the study period (from 12.4% in 1985 to 18.3% in 2003) and, together with year of birth, was an independent predictor of increased survival,’ the authors write.”
Now I can fully understand how increased terminations of babies with congenital abnormalities would have an impact on the overall infant mortality rate but are the researchers, or the reporter, seriously suggesting that there is a causal relationship between increased terminations and increased survival rates?
The statement “pregnancy termination played a significant role in boosting survival rates” suggests so. As does the headline: “Treatment Advances, Early Terminations Contribute to Higher Survival Rates in Children With Congenital Anomalies”.
I’ve been racking my brains trying to work out how increased terminations could lead to the babies that are born with congenital abnormalities being more likely to live longer, but I can’t see it. Without access to the Lancet report it is hard to tell whether the original research supports the Medscape headline, but my guess is that Medscape has taken a statement that was true for the general population and applied it specifically to the population of children with congenital abnormalities.
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
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”.
I’ll be honest and state that when I first read Leticia Velasquez’s appeal for truth about prenatal testing as it relates to Down’s syndrome I wasn’t entirely sympathetic. I have subsequently changed my mind.
“They denied the 90% abortion rate of DS children and that prenatal testing and genetic counseling were done to seek and destroy our precious children with DS,” she wrote of the document drawn up by five groups – the National Down Syndrome Society (NDSS), National Down Syndrome Congress (NDSC), American College of Obstetricians and Gynecologists (ACOG), American College of Medical Genetics (ACMG), and National Society of Genetic Counselors (NSGC) – in an attempt to reach a consensus about issues about, and perceptions of, prenatal testing as it relates to Down’s syndrome in the context of the Prenatally Diagnosed Condtions Awareness Act and the need to improve information given to parents expecting children with Down’s syndrome.
My initial reaction was that perhaps statistics about abortion rates had no place in information for would-be parents anyway – you can’t guilt-trip someone into choosing to keep a child with disability (or at least you shouldn’t).
However, I then read the document (Pdf) itself and immediately changed my opinion to be supportive of Leticia’s position.
The document is not designed to provide information to would-be parents but to effectively lay out some ground rules for the discussion of prenatal testing. It appears to be an attempt to be as politically neutral as possible on issues related to abortion and disability – which is to be applauded I think. However, the groups appear to have gone so far in attempting to be neutral that they are actually in denial about some issues what most people would hold to be self-evident.
Among the six ‘misconceptions’ are:
That may not be the primary reason for doctors recommending prenatal tests, but it is the primary driver behind the existence of prenatal testing programmes. As previously discussed in relation to testing programmes in Europe and Australia. As Dominic Lawson wrote of the UK’s programme: it is “hugely expensive, justifiable on cost-benefit grounds purely on the basis that it will detect and destroy children who would otherwise cost the Health Service much more as survivors”.
The consensus statement argues that “Several studies reporting older data, studies from single centers, and studies from other countries have reflected variation in the number of pregnancies terminated.” Yes, there are geographic variations, but if there is a study that shows any figure substantially lower than 90% I don’t remember seeing it.
I have pondered whether or not to make reference to the murder of Dr George Tiller, also known – to some – as Tiller the Killer, thanks to his willingness to perform late term abortions, and to others as a hero who helped those in need of help when others refused to do so.
In particular, his simple statement “Prenatal testing without prenatal choices is medical fraud” resonated with me, although ultimately I decided that the issue was beyond the scope of this blog.
However, Patricia E. Bauer has linked to a discussion in DoubleX magazine involving Ayelet Waldman, author of Bad Mother, and Elizabeth Weil, a contributing writer for the New York Times Magazine.
The discussion covers the issues surrounding late-term abortions with a specific reference to Down’s syndrome and with honesty and candor, attempts to widen the debate with the hope of finding some common ground. It is certainly though-provoking. Perhaps that, ultimately, will be the legacy of Dr George Tiller. We can but hope.
I’d encourage everyone to read the discussion in full:
“I guess I should start by telling you what happened to us. I’m not telling to get your sympathy, but so we can have a conversation, the one that really needs to be had, about what late abortions are really like and why women have them.”
“It’s only once you join the Dead Baby Club that you realize how tragically large it is.”
“Which babies have defects so serious we think it’s OK to decide they can’t live? What do you think about a baby with cystic fibrosis? What about a blind or a deaf one? We all know great people born in horrible bodies. Should we be allowed to say, no thanks, I’d rather try again for a better-formed kid?”
“Every child should have access to clear and honest information about sex, and to birth control. Every woman should have access to prenatal care and to the health and other services that remove the economic imperative from the decision about whether to have a baby.”
“How do we capitalize on Obama’s promise of change—and the galvanizing horror of Tiller’s assassination—to move ahead the country’s abortion debate, particularly with regard to the late ones?”
“It’s so much easier to vilify a fantasy, but when the object of your loathing turns out to be your friend or your sister, then suddenly things become much more complicated, suddenly you become capable of seeing shades of gray when once the world looked black and white.”
I just noticed that the UK’s National Down Syndrome Cytogenetic Register has published its latest annual report sometime in the last two months.
I haven’t seen any reporting of the latest statistics in the mainstream press – quite possibly because they contradict the false accounts of earlier statistics that were widely reported late last year.
UPDATE – The mainstream press picked up on these statistics six months later – UPDATE
The Register has changed to financial years for its reporting (presumably the UK government’s financial year, ending March 31) which makes direct comparison with the figures used in those reports impossible, however these are the preliminary stats from the current report (PDF):
- In 2007/8 there were 1,843 diagnoses of Down’s syndrome In England and Wales, of which 60% were prenatally diagnosed.
- In 2007/8 there were an estimated 743 Down’s syndrome live births, a live birth rate of 1.2 per 1000.
- Between 1989/90 and 2007/08 there has been a 72% increase in the number of diagnoses of Down’s syndrome in England and Wales from 1,075 to 1,843.
- The number of live birth has fluctuated over the years but overall has decreased by 1%, from 752 to 743.
Morris JK, The National Down Syndrome Cytogenetic Register 2007/8 Annual Report. Barts and The London School of Medicine and Dentistry. Queen Mary University of London 2009.
Since the register started collecting data on 1st January 1989 the annual number of Down syndrome diagnoses has increased steadily, firstly due to the considerable increases in maternal age, the major known risk factor of the condition, and secondly due to the increase in the numbers of DS pregnancies diagnosed prenatally, many of whom were non-viable and would have miscarried and therefore remained undiagnosed in the absence of prenatal screening.
The report also indicates that as screening has become more widespread the percentage of prenatally diagnosed cases that result in termination has been on average 91.4%, with a low of 88.4% (1990/91) and high of 93.2% (1989/90 and 1993/94).
The latest also notes that “The register is funded by the National Fetal Anomaly Screening Programme until March 2009. The Department of Health is then funding the NDSCR for only 1 year until March 2010.” It’s not clear what will happen to it after that.
Research from the Egenis research centre at the University of Exeter suggests that parents of children with genetic conditions would rather avoid prenatal testing with subsequent pregnancies – and indeed actively avoid subsequent pregnancies – due to the the the moral or existential dilemma raised by the limitations for diagnostic testing.
This report from the University of Exeter notes that “more than two-thirds of parents in the USA-based study chose not to have any more children rather than accepting tests to identify or avoid the birth of an affected child. Of the parents who did have further children, a majority chose not to make use of prenatal screening or testing.”
Dr Susan Kelly, a Senior Research Fellow at Egenis said: “Many parents did not perceive the information they understood to be available from prenatal testing to be useful or relevant to their sense of responsibility and control. Experiencing the birth of an affected child for some parents exposed the limitations of medical knowledge and practice, and placed medicine alongside other forms of interpretation and evidence. Interventions such as genetic testing for many were associated with uncertainty and a loss of control for parents as responsible caretakers and decision makers.”
I would absolutely agree that the loss of control and sense of helplessness was one of the reasons I have such a negative view of pre-natal testing following our experience. I documented in Waking Up in Illinois how a desire to regain control over our situation almost drove us towards termination.
Given that termination is the only decision that will result in a definitive outcome and place us back in control of the situation, it begins to become almost the default option, even though it is not the decision that either of us want to take.
I cannot explain how glad I am that we did not take that decision but I can understand why for so many people it is the decision they take to regain control, and I completely understand why in subsequent pregnancies people would avoid losing control in the first place.
The full study, Choosing not to choose: reproductive responses of parents of children with genetic conditions or impairments, is available from Sociology of Health & Illness.
It also notes that “many parents did not perceive the information they understood to be available from prenatal testing to be useful or relevant to the circumstances of their reproductive decisions; that is, to their sense of responsibility and control” and that “Many parents expressed a significant disjuncture between biomedical views of genetic conditions or impairments and parents’ lifeworld experience.”
Every child has the right to be born healthy but do unhealthy children have a right to be born?
That is the question raised by this news story on NDTV.com that covers the claim by B Subhashan Reddy, Human Rights Commission chairperson in the Indian state of Andhra Pradesh, that it is time for a legislation to prosecute parents for knowingly giving birth to an unhealthy child:
“If either or both parents are HIV positive, or have communicable diseases like TB or leprosy or genes related to Down’s Syndrome, dyslexia, they should not produce a child. Even muscular dystrophy, why should they produce an unhealthy child?”
You can watch a video of the news report here.
While Reddy does not state directly that parents of potentially unhealthy children be required to terminate the pregnancy the inference is clear – as is the suggestion that when it comes to human rights, unhealthy babies do not necessarily qualify.
The report includes responses from those that believe that “neither the government nor any law can decide if a child should be born or not”.
The Telegraph, among others, reported last week that the UK Department of Health is resisting an order by the Information Commissioner to release data on abortions performed beyond 24 weeks on the grounds of disability.
According to the report, the DoH is resisting on the grounds that revealing the figures could lead to the identification of individuals – both patients and doctors – involved.
The Telegraph states:
“Health chiefs stopped publishing full abortion data three years ago after a public outcry over the termination of a foetus with a cleft palate at 28 weeks’ gestation. The legality of this late abortion, carried out in 2001, was challenged by a Church of England curate, Joanna Jepson, who was born with a congenital jaw defect.
In 2005 the Crown Prosecution Service decided not to bring any charges against the NHS consultant, who publicly confirmed that he carried out the procedure, and another doctor.
Ministers were sufficiently worried by the prospect of further complaints – which they argued would invade the privacy of doctors carrying out terminations and women having abortions – to strictly limit the publication of the figures.
From 2005, official abortion statistics were “suppressed” if fewer than 10 cases were carried out. This in effect meant that abortion details on babies with club feet, webbed fingers and toes, or cleft lips and palates, disappeared from public view.
The last year for which data were fully available, 2002, showed that five foetuses were aborted because they had deformed feet, and a sixth because of a cleft lip and palate. In 2000 and 2001, nine foetuses were aborted because of cleft lip and palate, while a further two were aborted for cleft lip alone.”
Information about the number of late abortions carried out on the grounds of disability was apparently requested by the Pro-Life Alliance using the Freedom of Information Act.
The DoH’s appeal against the commissioner’s decision (PDF) will now be heard by the Information Tribunal.
I have often stated that there are few easy answers when it comes to dealing with a pre-natal diagnosis. Anyone who thinks termination is ‘the easy way out’ or ‘a simple decision’ should read this article from The Guardian.
Titled “Haunted by my lost son” it is a painfully honest and moving account of one mother’s attempt to come to terms with her decision to terminate the pregnancy of her son after he was discovered to have Patau’s syndrome – also known as Trisomy 13.