I hate that feeling you get when something is said or done or happens, that makes you realise that a lot of the stuff you, and others, have worked to achieve over many years, simply hasn’t managed to make its way into the consciousness of people who really should know better.
Here’s what I read that gave me that feeling yesterday, posted on the Facebook page of our local research institute (and published in our daily newspaper): http://health.thewest.com.au/news/1044/big-brother-is-watching-your-unborn-child
Here is the text:
Big Brother is watching … your unborn child
“The modern pregnancy is under surveillance. Technological advances in prenatal testing and ultrasound diagnosis have led to the current generation of pregnant women having the most observed foetuses in history.
In the not-so-distant past, parents had to wait until their baby was born before they got to see their baby and take its photograph. In contrast, the first photograph we have of my newborn son was taken when he was a lentil-sized cluster of cells at six weeks gestation. By the time of his birth he’d had so many photos taken in utero he very nearly emerged from the womb wearing dark sunglasses with a hand out saying “No paps please”.
A ground-breaking 1993 study by Professor John Newnham and colleagues at UWA, now known as the Raine Study, found that frequent ultrasounds during pregnancy did not cause any harm to mother or baby. Since then, many obstetric care providers have integrated regular ultrasound diagnosis into routine pregnancy management.
The multiple options for prenatal testing start even before pregnancy, with pre-implantation genetic diagnosis (PGD).
And there’s a new test on the block. Non-invasive prenatal testing (NIPT) is now commercially available to detect Down syndrome and other chromosomal disorders from a simple blood test at the end of the first trimester. The test has about 99 per cent accuracy at detecting Down syndrome and works by analysing foetal DNA present in the maternal blood.
A newly published WA study reports that the use of such tests can reduce the need for amniocentesis and other invasive screening by almost 90 per cent. This is an important finding, because invasive tests carry a small but worrying risk of miscarriage. At the moment such testing is expensive and the cost must be covered by the patient but it is likely the opportunities for such testing will expand in the future.
All of this technology and surveillance means that care providers can assess potential risks to the pregnancy earlier and more accurately than in the past. For women with high-risk pregnancies or those who have experienced pregnancy complications before, this extra surveillance can be reassuring.
But for the “worried well” amongst us, more opportunities for testing bring more opportunities to worry that something will be wrong. A recent study reported that the biggest disadvantage US obstetricians saw for the adoption of NIPT was the associated patient anxiety.
Our recent study at the Telethon Institute for Child Health Research found that more than a third of pregnant women reported experiencing stressful pregnancies and one of the most common causes of stress was the pregnancy itself.
It seems that ignorance was bliss for the worried well, who now have a multitude of sources of information on their pregnancy through all the monitoring.
It is true that risk is ever present in pregnancy and birth. Even with the huge advances in medical technology, complications can arise in situations that appeared to carry little or no risk, while conversely, high-risk pregnancies can result in perfectly healthy births.
It can be challenging for those with little medical knowledge to understand accurately the level of risk. One study found that pregnant women had difficulty appreciating simple low odds presented by their doctor such as 1 in 1000, with a tendency to internalise the statistic as meaning “I could be the one”.
This makes sense when you think that the average Australian’s chance of winning Lotto is about 1 in 45 million, yet we still continue to buy Lotto tickets in the hope that we could be the one who wins. One in 1000 is positively high risk in comparison.
It’s important to clarify risk information with your doctor and make sure you’re not worrying unnecessarily. And to save a load of added stress, always talk to your real doctor before you consult Dr Google. Make sure that for you, this added pregnancy surveillance only comes with positives.”
I found the tone and content of this article to be pretty offensive, and completely lacking in sensitivity and respect for people with disability and their families, and I said so on the Facebook page. The writer replied that offence had not been intended, but made no attempt to find out what my concerns were. So, I wrote and sent the following message:
“Thanks for your reply, and though you don’t ask, I’ll try to explain here what does concern me about the article.
It isn’t the ‘mentioning’ of the NIPT testing that concerns me – as a parent of a man with Down syndrome, I’m well beyond that level of sensitivity, and I’m not suggesting that testing shouldn’t be discussed – of course it should. It’s the language that is used that worries me. It perpetuates common belief that it is wrong to continue a pregnancy where the baby is known to have a detectable condition, such as Down syndrome, and that families with children with disabilities, or at ‘high risk’ are somehow different from the rest of the community. Indeed, the use of ‘high risk’ in itself, reflects the values base of the article, which I note that another person commented on.
You write that, “A newly published WA study reports that the use of such tests can reduce the need for amniocentesis and other invasive screening by almost 90 per cent. This is an important finding, because invasive tests carry a small but worrying risk of miscarriage” and “All of this technology and surveillance means that care providers can assess potential risks to the pregnancy earlier and more accurately than in the past”. We often see this type of language in the mainstream press – articles that speak about ‘low risk’ to mother a nd baby, and “potential risks to the pregnancy” but which always omit to mention that should you happen to be a baby with Down syndrome or some other detectable condition, the testing is actually most likely to be lethal.
You go on to write, “For women with high-risk pregnancies or those who have experienced pregnancy complications before, this extra surveillance can be reassuring”. Or terrifying. Or devastating. The experience itself is far from reassuring, and the decisions that may have to be made deserve to be acknowledged when discussing testing. There is very little consideration of the mental health of parents when they are going through this experience, and many parents report being pressured to test, based on the values of the professional involved. While testing may give you information, it can hardly be termed a ‘reassuring’ process; parents who receive a negative test result still say that it was a traumatic experience.
Furthermore, the article continues “But for the “worried well” amongst us, more opportunities for testing bring more opportunities to worry that something will be wrong”. I understand that the term ‘worried well’ is used by medical folk, but use of this terminology in the article again sets apart parents with ‘high-risk’ pregnancies, who presumably are not ‘well’? And the statement also continues to perpetuate the wrongness of pregnancies (and therefore people) with Down syndrome (or other detectable conditions).
Interesting that for “high risk’ families, the testing is said to be reassuring, while for ‘well’ parents, it creates anxiety…
As I said before, we are used to reading this kind of article in the mainstream media. What really concerns me here is that TICHR has been conducting research over many years, working in partnership with Down Syndrome WA and with parents and people with Down syndrome themselves. The research aims to bring about better lives for people in the Down syndrome community, and is well respected around Australia and the world, and everyone involved has worked to Australia and the world, and everyone involved has worked to understand, develop and maintain respectful relationships between researchers, individuals with Down syndrome and families. It is therefore so very disappointing to see an article in the mainstream media like this one, come from TICHR, ignoring the very real issues for our disability community, and perpetuating the ‘othering’ and reinforcing the attitudes of diminished value that we experience from the community generally, and that we work so hard to overcome.
I realise that this will seem to be personally critical, but this is not my intention. As a parent and advocate, as well as someone who has worked towards improving attitudes towards people with disability and their families within TICHR and in the wider community, I am acutely aware of the power of such articles, and I cannot let the it go without making comment”.
So, I feel better for having said my bit, but I still have that damn feeling niggling away.
Are we ever going to really get through to people that we and our kids aren’t some kind of alien species, different from the “worried well” whoever the hell they are meant to be. Do we stop being “well” when we have a kid with a disability, and become “those others”? Will people ever get that, if we do choose to have testing, that it isn’t because our lives our tragic and our kids with disabilities are burdens that we don’t care to repeat – everyone has their own personal reasons for testing, or not testing. When researchers who work with families of kids with disabilities don’t understand, do we ever have any hope that the rest of the community will? I don’t know, but I do know that whenever we read something like this article, and are knocked for six, again, we must pick ourselves up and let the writer know that they are helping to reinforce attitudes that divide, exclude and stigmatise and should have no place in our society. And hope that they get it.
handlewithcuriosity 