Trudy is part of our happy a nd fulfilling family
Bringing up a child with Down’s Syndrome, one must consider the notion of ‘choice’, says Lauren Eliott Lockhart
When I learned of the new Non-invasive Prenatal test (NIPT), I had already given birth to our daughter, Trudy, one of the 750 babies born each year with Down’s Syndrome in the UK.
My initial reaction was that this test was good because it was noninvasive. Parents would be at a much lower risk of miscarriage if they wanted to know for certain whether their child would be born with a serious chromosomal condition.
However, the more I considered the implications of this test, the more I realised that, with nine out of 10 people terminating a baby with Down’s Syndrome, this was not necessarily screening for, but screening out.
The NIPT is based on a maternal blood test. It analyses genetic fragments of the foetus present in maternal blood during pregnancy and it can be carried out from 10 weeks of pregnancy.
At present, the NIPT is not available on the NHS in Scotland but is available privately. However, it is already possible to read statements such as: “It is now possible to use NIPT to detect Down Syndrome” and that “NIPT detects more than 98 out of 100 babies with Down syndrome’ ” (NHS Rapid Project 2016).
I know that the majority in Scotland believes in choice, that every parent has a right to choose whether they continue a pregnancy before 24 weeks but I am not sure that people are aware they can choose to terminate up until birth if there is a substantial risk that the child would suffer from serious physical or mental abnormalities.
A child with a genetic disorder such as Down’s Syndrome could be terminated right up until birth.
The most important thing to consider here is the notion of ‘choice’, and I question what those choices are based on, with so much negative information coming our way. When Trudy’s diagnosis was confirmed, we were given a manual of all the associated health risks, of which there are many.
I never received this for our son who does not have a genetic disorder but is at risk of disease, impairment or mental health conditions just because these are the risks we all live with.
I think that if I had been given such a manual with an antenatal diagnosis of Down’s Syndrome, I would have been very fearful of the future. It seems that too much information can sometimes be a bad thing and that we need to be very careful about how this information is being presented.
I am glad that science is advancing and, without this progress, Trudy would not have survived the first week. There is very little that can make you appreciate life, regardless of how it manifests itself, than the prospect of losing it. But science seems to believe that they are alleviating the ‘burden of disability’, that they are making humankind better by giving us the option to eradicate the abnormalities. People cannot be cured of genetic disorders, so why not screen them out?
At the risk of extrapolating, we could be eradicating any condition that we can now prenatally screen for, such as leukaemia which is a form of blood cancer. This may not be the explicit objective of this project but I cannot help but wonder whether the implications have been properly considered.
Who is making the decisions about screening for Down’s Syndrome? Are they in a position to judge the quality of life for a person or a family of a person with a genetic disorder? The evidence, qualitative and anecdotal, seems to suggest that families live happy and fulfilling lives. We certainly do.
Trudy has an extra 21st chromosome in every cell, but that is all we know. Like so many people with disabilities, she cannot be reduced to her condition or negative assumptions about what she can and cannot do. She likes, she dislikes, she wants, she rejects.
We have been told from numerous reports that she has global development delay and low muscle tone, but you should see her splashing in the water! She gets tired, but she never tires of talking! I fear that the objective of this project is not to better equip parents for the future but to give them the option of avoiding it, and all at the expense of a potentially wonderful and inspiring life.
These lives are one of the threads
“I am glad that science is advancing and, without this progress, Trudy would not have survived the first week”
LAUREN ELIOTT LOCKHART
of human diversity and are precious, regardless of how they process the world.
More needs to be done about the impact of this test on families living with Down’s Syndrome and other genetic disorders, and of the future
of this small population who bring so much joy to people’s lives. Mrs Lauren Eliott Lockhart is a languages teacher working with children with disabilities and a guest writer for the Scottish Council on Human Bioethics.