I’ve just finished reading this thought-provoking book. It’s an intricate work of fiction with several twists and turns, daughter was disabled, she had Down’s syndrome, here is a review.
At the end of the book the authoress is interviewed and she states that the attitude toward those with disabilities has changed, has it? I question that at it’s root, if it had changed why do we offer screening on the NHS for abnormalities like Down’s syndrome and spina bifida? Back in the 1960’s, when the book was set, routine screening was not available, parents were faced with the situation when baby was born and some would have reacted as a parent did in this book, but the fact was that every parent accepted that their baby may be born with a disability. Nowadays parents have the opportunity to be given a risk factor for Down’s syndrome, whether by nuchal scan, combined, integrated or the triple test. I have a high uptake within my caseload for the nuchal and blood biochemistry test, it approaches 100% , I impress upon my women that these are screening, not diagnostic, they give a risk, an odds, you can not make a decision to terminate the pregnancy based solely on that result, a diagnostic test, amniocentesis (amnio) or chorionic villus sampling (CVS), is required. How reliable is the nuchal screening? Locally (NHS) we quote the reliability as being 80%, whilst Fetal Medicine Centre quote their detection rate as 90%, good, but is this good enough? The aspect I find problematic is that you are given a risk factor e.g 1:250. Now, if you receive this result you are offered an amnio or CVS, diagnostic tests which also contain a 1% risk factor of their own, miscarriage. Supposing the risk factor given following the nuchal were 1:12,000, is that good? Well, I’m not a gambler, 0:12,000 sounds good to me, 1 in anything is leaving room for doubt, why shouldn’t I, or my baby, be that 1? I am in a minority though, most expectant parents appear to regard the test as providing an assurance that their baby will not have Down’s syndrome. I have cared for a family who had been given a risk factor of 1:10,000 but when baby was born it was apparent that she had Down’s syndrome, they were shocked, horrified and rejected baby immediately, much as the parent did in The Memory Keeper’s Daughter, the baby was taken into care.
So, we have come full circle. Are we more tolerant of disability, or are we just more tolerant if it doesn’t affect us personally?
The above is a personal perspective, I must never influence a couple’s decision. I provide the information and then support them in their decision.