16/02/16

Heartbreak to Anger to Determination to create change

I remember looking at the newspapers and feeling a mixture of sadness, fear and anger.

The story that caught my eye was that scientists had developed a new test to be used during pregnancy that was more accurate in identifying underlying issues in the pregnancy whilst reducing the risk of miscarriage often associated with the existing amino. The news was expected but the terminology was horrific
It was portrayed as a major breakthrough, similar to that which you would expect to greet news such as a cure for some life-threatening illness or disease. It made me feel extremely raw and vulnerable, I was left wondering as to why money is invested in such advancements when ultimately there is nothing to fear, certainly as far as DS is concerned.

I needed to seek support and turned to respected individuals who we have grown up with over the last few years and they echoed my sentiments. I then looked a little further afield, to supposed advocates of Down’s Syndrome.

This was yet another mistake as it seemed a significant number of people within the Down’s Syndrome community had turned into a self-appointed group of crusaders determined to eradicate abortion on all levels.

Their reports and obvious mis-quoting of figures simply acted to increase my fear. Don’t get me wrong, I was certainly in defensive mode given the reporting terminology and obvious political agenda in funding such advancements; but the way some members of this group attacked people who had alternative views made me very concerned about the impression they were creating. They created hysteria; they generated a feeling that anybody with a choice would “choose to terminate”.

As the proud father of twin daughters with Down’s Syndrome I had one question: WHY? They were doing far more harm than good in my opinion. If we could educate and raise awareness; why would this be the only option, the obvious option to anyone who has DS in their life would be to continue, so let’s spread that message. It was heartbreaking to read.

What I did not realise until I read the reports is that if a DS diagnosis is provided during pregnancy then a termination is permitted up to 40 weeks (although thankfully it’s rarely enforced) rather than the normal limit of 24 weeks. This ripped my heart out!

The girls were born at 36 weeks so 4 weeks prior to this upper limit. I don’t intend to get into the debate of when a foetus becomes a baby but this really struck a chord with me as it cannot be right. At 36 weeks the girls were perfectly formed, fully functioning organs etc, if I can do anything to remove this part of legislation then I certainly support it.

After a few days this emotion turned into disappointment and created even more resolve in me to really push the truth about Down’s Syndrome, a life we enjoy, embrace and wouldn’t change for the world. Never have I been as determined to focus on the girls’ achievements, dispel the myths of the 1960′s and show society that it should embrace and include difference.

The tests will not go away nor should they if it decreases the risk of miscarriage, however, now more than ever the world needs to be educated about what DS really is. There needs to be funding to support those parents and families who are at scan stage, faced with a diagnosis they no nothing or very little about and significant improvements made in the approach of medical practitioners in their attitude and delivery when speaking about Down’s Syndrome.