Tag Archives: Down’s_Syndrome

Is Downs Syndrome really a severe burden?

an educator of children with special needs and as a parent of a child with Down’s Syndrome, this topic tore at my heart.

Why is a person with Down’s Syndrome considered to be so dreadful to the world? Sally Phillips in her documentary, A World without Down’s Syndrome, BBC 2016, highlighted several key points for society to consider including what kind of society are we that wants to abort these fetuses right up until birth? Why is it socially acceptable to do this?

Facts in the UK on DS  (I don’t have Australian data):

  • In the UK 9/10 women choose to terminate a fetus with DS
  • Screening was introduced in the UK 30 years ago with no public discussion – there has never been a public ethical debate on the issue.
  • A new NIPT screening test developed by Lyn Chitty at the Greater Ormond St Hospital gives testing for DS 99% accuracy (more ‘choice’?). This test formerly available to private patients only, is to be rolled out under the NHS described as “the most exciting development in pregnancy care for decades …”
  • A medical description given to parents on DS lists ALL that could possibly go wrong. How about giving the same list to EVERY prospective parent!!!
  • Mothers are given a very grey picture: DS was described by a Professor (fetal medicine expert) “For some people having a child with DS is an intolerable event ….. a burden to the family and society which will last for a long time ….”
  • Comments from a person with DS: “Who is perfect? We have lives just like everyone else.” This person because she has DS, has to justify her existence.  DS is NOT a disease.
  • Counselling services do not have up-to-date advice to give prospective mums on their diagnosis. They listen and then ask the person how do they think they can cope?
  • When a parent spoke from her heart about her journey with her DS child including her second pregnancy and the pressure she was under for testing to a room of nurses and midwives, every single person cried.

 

How do we change society’s fear and the people who tell prospective parents their child will be a burden? By education. For people born with DS, it is not the end of the world for them!  They love life, they love people and they appreciate any opportunity which comes their way.

This whole issue is very close to me as I received the same pressure in my second pregnancy when I was expecting twins and one was identified as DS. I was offered genetic counselling and the ‘choice’ to abort the DS twin. Again, at labour, I was reminded, “this child will be a huge burden for the rest of your life. We can deny him oxygen …. “(my twins were both prematurely born so needed to be in a premi-crib for 6 weeks).  My third pregnancy resulted in pressure for testing as ‘I already had one child with a disability.’

When we live our lives in a way that we consider some people less worthy to live because of some ‘defect’, or a fear of what might be, we are not appreciating the  existence of that person as a living being, an atma, the person residing within the body, a person with the same feelings and dreams as any of us – yes they are different, but so are we all.  Prospective parents need support and reassurance that their journey will be somewhat different but nonetheless their child will be loved and cherised as any other child.  And just as it takes a village to raise any child, it takes a society to support these individuals in their life’s journey.   If we are looking to eradicate people born with Downs Syndrome, where does it end?  What about people with other disabilities? What about a person with an acquired disability?  What about the elderly? At some point or another, we are all going to be a burden on society. What kind of society or world do we want?