In the UK, part of the routine antenatal care is the offer of a screening test for Down’s syndrome. What would having a child with Down’s syndrome mean? Why might you want to know? If the test is offered, does that mean that it is an awful thing for you baby to be affected by? Oh – did you say it is a choice whether to have the test?
Questions and assumptions
So many questions, and so many assumptions. In the many years I worked as a midwife in the NHS, I think it is fair to say that the majority of women having the screening test really didn’t think much about it. They didn’t realise that the test was optional. Indeed I talk to a great many people who are really suprised when I point this out. Only this weekend I was talking to someone who runs antenatal education classes who was staggered to learn that any test is optional. There is clearly work to be done….. So, perhaps we need to be clearer about the offer of the screening test. The question is “would you want to know if you are at an increased chance of having a child with Down’s syndrome?”
In order to answer that question, you first need to have some knowledge about what Down’s syndrome actually is and the effects on the individual. If your child is “different”, what would that mean for your family? The NHS leaflet about screening tests gives a very brief and rather medicalised description of Down’s syndrome. The fact that it appears alongside other conditions which are seen as “problems” carries it’s own message.
This week I have been reading a newly published book For the Love of Oscar . This provides a very human account of having a child with an extra 21st chromosome. I have known Sarah Roberts for several years, and her blog Don’t be sorry is one of the most interesting and entertaining blogs around sharing, in a very straight talking way, her experience of having a child with Down’s syndrome. Unless you are currently and actively involved with people who happen to have Down’s syndrome, I strongly suggest you have a look. If you are currently and actively involved, I expect you already know of Sarah’s work, if not, I suggest you have a look too!
As Sarah says “I figure it’s time to diminish any misconceptions or prejudices about Down Syndrome that we might have”.
Informed decision making
As with so many “conditions” it is easy to have some knowledge based on the problems and challenges that are, or can be, associated with it. Much of the so-called information is also very much out of date. It is another thing entirely to have real life insight. In order to make informed decisions, you need information. If you then opt for a test, make sure you know whether it is a “screening” test or a “diagnostic” test. They are very different.
If you want to explore these issues before making an informed choice, I offer an initial free telephone consultation as well as an in depth discussion in your own home in which we can discuss this and other issues of interest to you.
I support those who undertake testing and those who don’t. I support those who continue their pregnancy when they know their baby faces health or developmental issues, and those who choose not to. My role is not to judge or to tell you what to do, it is to ensure that you have the information and the safe space in which to work out what is best for you and your baby.