Wednesday, 16 August 2017

Blog 94 - 60 Minutes Story on Blood Test for Down Syndrome

Last Sunday night I sat in front of the television, a nervous knot in my stomach. All week I had been watching the advertieements for a story that would be airing that night. With my past experience with the media, I was apprehensive about what spin they would be taking on the topic. The topic you ask? The topic being the NIPT screening blood test which at the moment is offered for a fee, to women at their 12 week scan. The chromosomal test looks for Trisomy 21, the most common form of Down syndrome. It also tests for other anomalies. There are a variety of practitioners advocating for the test to be funded by Medicare.

Why was I nervous about this story? Well as people know, I have a ten-year-old daughter who has Down syndrome. I undertook a blood test at my twelve week appointment, and I had the nuchel transluency check on the scan. Apparently I had a 1 in 5 chance of having a child with Down syndrome based on these results combined with my age, but the obstretrician failed to tell me. The scan had not picked up any other signs of Down syndrome, and he knew my stance on invasive testing, such as the amniocentesis. I personally am pro-life and would never terminate a pregnancy. I also had a genetic craniofacial syndrome which appeared in a similar fashion on the scans.

Before the birth, we were under the belief that our daughter Jessica, would be born with a mild version of my syndrome, or 'normal', just with slighty wider set eyes than usual. There was no mention whatsoever of Down syndrome.

My husband and I both thought she had DS at her birth, but nothing was mentioned to us in hospital. Once we got home, Jessica slept all the time and wouldn't feed so we took her back to the hospital for help. Nothing again was mentioned. At four weeks we took Jessica to see our geneticist. The geneticist took one look at her and bluntly diagnosed her straight away.

This was a huge shock for me. I didn't know why I reacted in such a way. The only reason I can give is that through all the tests when Down syndrome was spoken about in a negative way, and society's prejudices I'd subconsciously picked up, had gotten under my skin. I knew no one with Down syndrome and I didn't like what I was hearing.

In hindsight I wished the doctor had told me I had a 1 in 5 chance. I could have researched and found out about the syndrome. I could have met others who had children with Down syndrome. I could have found out that having a child with Down syndrome would require extra work, but that my child could go on to lead an ordinary life. I already had two children with high needs so having another one with high needs was not the issue - it was fear of the unknown.

I have friends who live in Brisbane, who were offered terminations up into their thirty weeks. We are saving babies at this stage, but killing our babies with Down syndrome.

So I was scared that the 60 minutes story wasn't going to view Down syndrome in a positive manner. To my surprise, and happiness, they did show that children with DS can grow up to lead independent lives, and these people are more than their chromosomes. Sixty Minutes gave a balanced view on the issue.

While watching the story, I shed tears for the 9 out of 10 babies who are currently terminated. It reminds me so much of Hitler's extermination of people who he saw as inferior. I also cringed at some of the misinformed language that was used, and the obstetrician's hard-nosed attitude. But I also have become aware lately that I see life in a very different way to the way some people do. I believe all humans are valuable and people born with disabilities are just as valued as people who aren't. If a human survives the pregnancy and the birthing process, then they have the right to life, and to be cared for. They are entitled to the International Rights that every person is entitled to.

In conclusion, I couldn't imagine my life now without my daughter. She offers a new view on the world and she has taught me to stop and smell the roses. I wish I hadn't reacted the way I had when I was told the news that she had Down syndrome. And I am now determined that other people will know that the diagnosis of Down syndrome is not a 'death sentence'; it is just a different route to be travelled.

The following links are a great overview of the story.

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