There is no doubt this is going to be an emotive subject. If we could choose to rule out disabilities in our children, is that something we want to be able to do?
Not everyone chooses to have children. Some people are desperate and have difficulty, some like me get them first time round and some others have no plans for kids and get them anyway. But not many will have sat down and thought, I know, what I've always wanted in my life and what would make it complete would be if we could have an autistic child. Or a child who was blind, had Down's Syndrome or an extreme pain disorder? What if you could choose not to have a disabled child?
I've posted many times about our happy neurodiverse family, how my children are 'different, not less' and about our proud moments when my autistic boys have made a breakthrough or an amazing achievement. But I've also plenty of posts about the other side of having my boys, their meltdowns, their struggles, being unaccepted... the difficulties that they and we face everyday because of this integral part of who they are. Both my son's are autistic.
Do I wish either of them away.. of course not. Do I wish society made it easier for them to exist.. very much so. But what if I could have taken their struggles away...what if I could do it before they were born... or before they were conceived? What if my beautiful boys could have been entirely different beautiful boys, with no neurological or physical differences that made life harder for them? Would I have done that?
Let's think about it another way. I love all my three children very much, but have made no secret of the fact that my husband and I don't want to have another child at the moment. The reason for this is because autism is likely to be genetic. There is a high chance our next child could have autism - and I don't think we could cope with that presently. We don't want another disabled child. So what if I could guarantee that my next child would not have autism? Wouldn't that solve my issue, and my husband and I could made our five into six?
'Science can't do that,' I hear you say. Well no, not yet.
But we could be closer than you think.
All the conditions I named are genetic. Several genetic conditions can be determined using a non-invasive prenatal diagnosis (NIPD) or testing (NIPT). These work because a small amount of any baby's DNA is present in their mother's blood during pregnancy and can be detected in the mother's blood from about 7 weeks onwards. Both an NIPD and NIPT predict with 98% accuracy the presence of certain chromosome related conditions in the embryo (which technically becomes fetus after 11 weeks of pregnancy). As it is not 100% accurate, where an additional test can confirm the condition its called an NIPT instead of an NIPD as the 'diagnosis' is not confirmed until an additional more risky invasive test is carried out.
Currently in the UK, the NHS offers NIPD for several conditions including Cystic Fibrosis, achondroplasia and thanatophoric dysplasia, Apert Syndrome, Crouzon syndrome and other what are called 'single gene disorders'. They can also be used to determine high risks associated with the sex of the baby such as Duchenne muscular dystrophy, Haemophilia, Adrenoleukodystrophy and Congenital adrenal hyperplasia.
So far so good?
In some cases finding out about a diagnosis can have an impact on how baby can be treated in the womb or for birth plans. For example, special instruments may be used if there is a high risk of baby having haemophilia to reduce the risk of bleeding. A female baby with congenital adrenal hyperplasia can be treated in the womb to prevent the abnormal development of external genitalia. But for most of these conditions it's just knowledge. So what happens next?
One of the new prenatal tests about to become available on the NHS is an NIPT that can very accuracy detect Down’s syndrome along with Edwards syndrome, Patau syndrome and Turner syndrome. These conditions occur due to different numbers of chromosomes. Tragically around 9/10 babies with Edwards or Patau Syndrome die within their first year. That's maybe the saddest things I've ever written on this blog.
But what about Down's Syndrome? What happens next there? According to the NHS, although there is no "cure" for Down's Syndrome, "there are ways to help children with the condition develop into healthy and fulfilled individuals who are able to achieve the level of independence right for them. Improved education and support has led to more opportunities for people with Down's Syndrome. These include being able to leave home, form new relationships, gain employment and lead largely independent lives."
This NIPT is already available in several countries. However, the result is not an embracing of improved education and support leading to these opportunities in some countries, instead it has resulted in all Down’s Syndrome pregnancies there being terminated.
Now what do you think?
I've said before, I don't know what I would have done if the old fashioned Down's Syndrome test that I was given (as standard practice by the way), had come back as 'high risk'. I was relieved when it came back as low. And I suspect this was because of the pre-conceptions about what Down's Syndrome was. I knew very little about it. What I had was mostly a perception that had been created by society I think. But despite still knowing relatively little about it, I think my perception of it has changed. Not only have I met a few people with Down's Syndrome but I think it is also undoubtedly because I have children with their own conditions that need extra support.
I can see how some of the things listed on the NHS site to help someone with Down's Syndrome are familiar to me as someone parenting children with autism. They can learn and can function better in the world with improved education and support. I've said before that if there was a way we could have known about autism earlier we would have been more prepared to help and bring up our kids. However, my boys still each struggle with many things.
But the struggles our first son had did not deter us from having our second son despite having a higher risk of autism. And when David was diagnosed we were still over joyed when we fell pregnant with our daughter, who does not (currently) have a diagnosis, though I haven't ruled it out. I want the kids I have, I love them to pieces, but, I don't think we could cope if our next one had difficulties too.
And this is where is could get real for me. Did you know autism diagnosis is much greater in boys than girls? Over five times more likely infact. As the NIPD above could determine sex early in pregnancy, it could tell us whether we have are having boy, much sooner than a scan, which means our baby has a higher chance of getting an autism diagnosis. I should point out that presently, we could not get the test for this reason on the NHS.
A future version of this test could be even more accurate in determining autism likelihood. So if I could get today's test or a test in the future, should I fall pregnant and then decide whether to continue with it based on this probability of the child having autism?
That's not the question I'm really asking is it... the question is ... should I be able to?
And that's a question I cannot answer either. As a mother who could easily have another autistic child and for that reason has chosen to not get pregnant again, I cannot and would never think of passing judgement on anyone for any choice they made with their pregnancy. It is extremely personal and warrants the utmost respect.
And that respect, for parents, for people (disabled and not) and for society is why it's important what we think about how tests like these are being used, monitored and implemented. And that's not even me talking. Much of the information on this post came from The NHS RAPID Project (Reliable Accurate Prenatal non-Invasive Diagnosis), a five-year UK national programme funded by the National Institute for Health Research. A project that lessens the chance of 25,000 women a year miscarrying due to an invasive test. But even this NHS site says:
"The nature and timing of pre-test counselling may also have to change. The ethical and social implications of the potentially easier access to non-invasive testing may also be significant. As NHS laboratories are already experimenting with NIPD, there is an urgent need for a formal evaluation to develop quality procedures and appropriate, safe healthcare delivery systems accounting for patient preference, and yet minimising risks to families from improperly implemented new technologies that might otherwise simply ‘seep’ into practice."
And it's this same respect that means we should carefully consider where this capability could lead us and where we want them to lead to. And that discussion should include those affected by that future, like parents and people with conditions and disabilities.
Sally Phillips presents a documentary on BBC2 "A World without Down's Syndrome". Why not take a look and see what you think?