Everyone is faced with choices, all of the time. What to have for breakfast, what to wear, how many times to try extracting your teenager from their bed, red wine or white wine, coffee or tea, chocolate or …. no, that’s not a choice, always chocolate!
At the moment the Saunders family is facing a lot of choices. We are moving, to Dorset, next year. So the choices are huge, small, never-ending and threatening to be overwhelming. Where shall we live? How rural? How on earth do we decide what out of our huge amount of accumulated stuff can be ditched? (And how can I possibly be expected to decide which books should go?) When do we put the house on the market? Which church will we choose? Where will Alice (17-year-old who has Down’s Syndrome) go to college? I am already getting so bemused by all of this that when my husband asked me where I wanted to go for a dog walk this afternoon, I almost burst into tears! Stop asking me to make decisions! (Apart from the chocolate one, the chocolate one is a very easy decision, closely followed by the “Glass of wine?” one!)
Some people, however, have to make a huge choice, bigger even than whether or not to move house. A choice which is literally a matter of life and death and a choice which is very much in the news at the moment. This decision centres around the new antenatal screening test Non-Invasive Prenatal Testing, or NIPT. This test is due to be rolled out in this country to test for three conditions (currently) – Down’s Syndrome, Edward’s Syndrome and Patau Syndrome. Of course, tests already exist, but this new one is much “easier”, consisting of testing a sample of the mother’s blood to extract traces of the baby’s DNA which can then be screened for chromosomal abnormalities. It isn’t 100% but will give a very good indication of the likelihood that the baby has one of these conditions which can then be confirmed with an invasive test, such as amniocentesis. Of course, tests are already available which have the same outcome, so women, parents are already having to choose, but this one is much more straightforward and therefore likely to more widely taken up. Unfortunately, the decisions which follow are no more straightforward – decision one, whether to have the test and decision two, what to do about the results, should they be positive (although many, if not most, people would see a positive result as very negative).
Now some people make the first choice (whether or not to have the test) with every intention of continuing with the pregnancy, but being prepared. Many people, however, having received the news that their baby has Down’s Syndrome (and let’s be realistic here, almost all of the current debate and publicity centres around Down’s Syndrome) then have another heartbreaking, traumatising, far-reaching choice to make – whether to have a termination or continue with the pregnancy. And this is where what I consider to be the most important factor comes in – information. In order to make a decision of such enormity the baby’s parents must have accurate, up-to-date, balanced, unbiased information on which to base that decision. It’s no use just giving a list of negatives, all the things which might cause problems, all the possible health problems, all the extra care which may be needed, the level of developmental delay which could occur – parents have to be told about what people with Down’s Syndrome can achieve, that almost all will learn to walk and talk, will go to mainstream school for at least part of their education, will have friends, will learn to read, will be cantankerous toddlers and bolshie teenagers, may have a job and live independently with support. Knowledge is everything, knowledge which encompasses all possibilities.
I chose not to have any testing with any of my pregnancies, but had I done so I know that I would have wanted to know about as much as possible about any condition my baby may or may not have. Maybe I’m a coward, I didn’t want to have to make that choice, not that the result of any screening would have made one shred of difference, I wouldn’t terminate.
My youngest daughter has Down’s Syndrome. I know that having a child with additional needs is no bed of roses and I also know that we are fortunate that Alice doesn’t face as many challenges as some do. I know that some people feel that they just couldn’t cope and I would never judge anyone, but it is absolutely imperative that such massive choices are made based on the best information possible – we owe that to everyone involved.
In the meantime, just don’t ask me if I want tea or coffee!