Wednesday, 20 January 2016

Where Is The Line?

The new Non Invasive Prenatal Test (NIPT) has been heralded as an advance in science and medicine. It is a test which assesses whether a baby has certain genetic conditions such as Downs, Edwards or Patau Syndromes. Previously women were offered invasive testing such as CVS and amniocentesis and these carried a risk of miscarriage. Undoubtedly the new test is a positive step as it will mean fewer babies are lost in carrying out such tests. 

However, there is a darker side to this test which people may not have considered. Whilst this test will save many babies’ lives lost during the tests, it is likely to increase the number of terminations that take place. Currently 90% of babies identified with Down Syndrome antenatally are aborted. Shockingly this is legally allowed to take place up to full term, compared with a 24 week cut off for “normal” babies. I do not wish to pass judgement on anyone making the decision to terminate their pregnancy, there are a range of reasons why people might choose this path. Having been in the position of having to make such a choice myself and being advised by the Professor of Medicine carrying out my amniocentesis “I suggest you consider termination” it’s not a nice place to be. The medical world appears to have a very black and white view on this matter and it is not surprising that so many terminations take place given that people in authority are advising in such a way around these matters, very probably based on out of date information. Certainly people are not being given a balanced view on what a life with Down Syndrome is like today. My issue is with the media portrayal which remains unbalanced and points to Down Syndrome as something  terrible and debilitating.

Does my son “suffer from Down Syndrome?” Absolutely not. Yes he has an extra chromosome but it is not a disease! To be frank, there are challenges and worries, but then would I say this is unique to children with Down Syndrome? No, definitely not. At 5 months old, our son Jake had major heart surgery and had a rocky time post operatively requiring home oxygen for over two years involving carrying cylinders and also a new baby thrown into the mix (no, I don’t know what we were thinking either!). Thankfully by the time he was 3 years old, he was a lot stronger, was walking, signing and talking. I didn’t want for Jake to be treated differently to his peer group, he began private day nursery at 8 months old and thrived there. I hope that he has enriched the lives of those he met, along the way, I think the place was a lot quieter when he left for school :)

Jake is now 5 years old and fit and well. He attends local mainstream school and has many friends already. He is popular amongst his peers and we have been on play dates and to parties in the few short weeks since he startedHis teacher at parents evening said what a credit he was to us. She highlighted his empathy and how he looks after anyone who is upset or hurt, you can’t buy that sort of caring nature. Jake is learning to read and is doing so well in spelling and reading simple words by himself before the end of his first term. Don’t get me wrong, we have worked really hard with him (and thanks to his nursery and school staff) for him to recognise his letters and numbers as we appreciate that it can take a little longer for him to commit these to memory. We have learnt that Jake has to work extra hard to achieve the same milestones as his peers and this makes the achievement of such all the sweeter. On Friday he received the school “Reading Star of the Week” certificate which was a proud moment for us. 

Jake and his little brother Joe, now 3, share a very close bond and although there are moments of sibling rivalry, they both benefit from the other’s learning and experience. Joe looks up to Jake and wants to go to school with him, he is learning to read from watching him do his homework each evening. Jake learnt to walk with Joe, they both went through potty training together (Jake was on oxygen and unable to walk when his peers went through this in nursery)they love to play on the trampoline together and run around in the garden and park and are usually up to mischief together. It is lovely to see how Joe is developing into such a caring boy and will undoubtedly be an advocate for Jake when he is older should he need it.

So that brings us to the question surrounding the testing. The media portrayal has been that this advance is something to be celebrated. We can detect Down Syndrome! Hurray. But what it fails to look at in many case, is what exactly is done with that information? Statistics state that 90% terminate and it is likely that the number of terminations for a positive result for Down Syndrome will increase. So how can this be celebrated? Is my son’s life less important than another “normal” child? If I think of all the people Jake has met, I am continually surprised how people warm to him and his effervescent nature. He brightens up any room he enters and he wins people over very easily.

When I found out I was expecting a baby with Down Syndrome, I was shocked and upset. I didn’t expect it and didn’t understand what it encompassed. By the time I had the amniocentesis, I had felt my baby move, it was my child and I was intending to protect them regardless of Society’s expectations for me to terminate. Indeed, it seemed to be a surprise to a lot of the medical staff I encountered for the additional antenatal appointments, that we were continuing with the pregnancy. I remember a conversation I had at the time about where the line was?”; where do you stop in terms of choosing what your baby is like. Would people terminate if they knew their child was going to have autism, dyslexia or other conditions which are not diagnosed until later in life? I follow a Facebook page which is about a little boy, the same age as Jake. He had an awful accident where a tree branch fell on him in nursery and he was left almost completely paralysed and with brain damage. He was once healthy little boy and now has to have a lot of support to help him. With love and attention he is making very slow progress to communicate and his devoted parents do all they can for their sonThat could never be anticipated before his birth. So what about cancer? Would the baby’s life not be worth living if you knew they might one day have cancer? What about if you wanted one sex over another? We begin to stray into the territory of eugenics and the decisions made in Hitler’s 1930’s Germany. It’s not that different if you think about it. What makes us able to decide about a baby’s life as a matter of convenience? Where is the line? Is my child’s life not one worth living in case it is more difficult?

I dread the day where I have to explain this to either of my boys, I think both of their lives are very much worth living and the world is a much richer place for having them both in it. But then I am extremely biased and proud to be so.


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  2. Brilliant, thoughtful piece. I refused testing in both pregnancies because I would not have terminated and health professionals could not give another reason to test. My son was born with DS and have since met clever 10% who use pre-natal diagnosis to research and connect with support networks before birth - wish I'd thought of it myself! My son has also started school this year and settled in well. Good luck, I'll be following your blog with interest!

  3. Caring for Jake was so rewarding,I loved spending time with him. I still think of him and smile. I felt it was a privilege to care for Jake. So pleased to hear he is enjoying school, I'm sure he has won the hearts of his teachers Jane Owens