I enjoy technology and I am very thankful for the many advances that make life so much easier than it once was. I say “easier” and not “better” because there is an increased responsibility that often comes with advanced technology. I tell my kids all of the time, “Just because you can do something does not mean you should.” Having access to non-invasive prenatal tests to determine if your unborn child has Down syndrome does not mean you should utilize them.
I have an opinion as well as the opportunity to share it with you through this blog. I am not trying to force my views on you. I believe I am right and I have reasons for these opinions but I truly value difference and respect your right to disagree.
What is to follow is my opinion and is not intended to condemn those who disagree or have taken actions opposed to my opinion. In fact, if reading my words today were to cause someone to feel badly as a result I would have failed. My desire is to share some things that I have observed about the topic of prenatal testing for Down syndrome and hopefully further the conversation.
My goal with this post remains the same as the purpose behind Treyton’s Posse; I desire to knock down the barriers that limit individuals with Down syndrome from reaching their potential. I want to help the world see that a life with Down syndrome is a life worth living.
It has been a struggle.
I started to write about the subject of prenatal testing for Down syndrome back in October of 2012 when I discovered the story about Baby Doe – the resulting post of that discovering was called “The Face of Down syndrome.” Since that time I have considered the topic on many occasions but could not find the words I needed.
Recently I have seen several other bloggers writing on the topic so I decided I was going to finally write this post. It has been a little longer than normal since my last post because I really have been wrestling with how to approach this topic. There are a lot of different aspects to consider. After starting and stopping my writing several times over this past week I decided to keep things limited and focused.
Two areas of focus.
This blog is supposed to be giving a father’s perspective on Down syndrome and as a father with a son that has Down syndrome technically anything I write on the subject should fit. But as I was trying to fit all of the different factors of genetic testing for Down syndrome into this post I felt like I was losing my way. That is why I decided on just two concepts. Ask my kids, I am a matter of fact kind of guy and try to avoid over-complicating things.
I have written a book review on Andrew Solomon’s book Far From the Tree and have referenced it in other posts as well. Solomon gives the reader a lot to think about; it has been months since I finished that book and I still find myself pondering some of what I read.
Solomon caused me to think a lot about the serious nature of the decision to get genetic testing. This advancement has put a lot of power into the hands of prospective parents. More and more expectant parents find themselves in a doctor’s office deciding which lives are worth living.
For the sake of brevity and focus I did not want to get into all of the ethical and philosophical issues that are twisted up in this topic. However, I do believe there is a connection with this topic and how the world sees my son or any other person with Down syndrome.
The second aspect of prenatal testing for Down syndrome that I want to mention is that of ignorance. It is a harsh sounding word but I don’t intend to come across that way. But, the reality is that most people who are faced with the decision to test for the chromosomal disorder have no idea about what it is like to raise a child with Down syndrome.
Before Treyton I was regretfully ignorant about Down syndrome. If before Treyton was born I was told that he would have Down syndrome I am sure that I would have had a multitude of unfounded, incorrect thoughts race through my head. I am sure that is the case with most people. This is a concern I have about prenatal testing for Down syndrome, “How can prospective parents make an intelligent decision about something of which they are completely ignorant?”
The mother of Jason Kingsley (co-author of the book Count Us In) does a good job of illustrating the complexities involved. Emily Kingsley said, “…if I had had amnio, I would have terminated and I would have missed out on what has been not only the most difficult but also the most enriching experience of my life.”
The bottom line.
For me it all comes down to WHY. What are you doing to do with the information? My wife and I have talked a little about this and I think we have different opinions. If we were to have another child I think she will be more likely to want a genetic test for Down syndrome than me.
Both of us were raised in strong pro-life families and are against abortion. But I think that most “right-to-lifers” are missing the boat in terms of people like me. It is easy to say abortion is wrong when you are not the person dealing with a disability.
Again, I ask, “What are you going to do with the information you get from the test?” If you don’t know, I would wait on the test until you do; avoid making decisions under those circumstances. For me, since I know I won’t choose abortion I don’t see the point in getting the test. It won’t change anything for me.
My wife Leigh Ann, on the other hand, has a different way of seeing things. She has said that even though abortion would not be an option it would help her to know. It comes down to her personality versus mine. The personalities of the parents are a big factor in the prenatal testing decision.
We’re all in this together.
Unfortunately I am well versed in the Disney made for TV movie High School Musical. So much so that when I began writing this paragraph I could hear the theme song from the first movie. I want to emphasize that regardless of where you stand on this issue I support you in any effort you make to advance the cause those with Down syndrome or other intellectual disabilities.