Down syndrome from a father's perspective.

A father’s opinion about prenatal testing for Down syndrome.

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.

Disclaimer.

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 do believe there is a connection with this topic and how the world sees my son or any other person with Down syndrome.

Gravity

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.

Ignorance

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.

  1. Mardra

    Thank you for sharing this. I have written much on this subject – most of it has not seen the light of day. I have a friend who reminds me that keeping the discussion alive keeps the options available.
    I also write a lot of fiction surrounding this issue, my view of the future is not very bright.
    I hope I’m wrong and the discussion continues.

    • Rob Arnold

      You are welcome. I wonder if fiction might be a good way to handle this discussion. There are a lot of aspects of genetic that are theoretical and fiction may be a way to illustrate those.

  2. Jisun

    Have you ever read The Unfinished Child, by Theresa Shea? It is entirely about this topic and is fiction. I personally had lots of issues with the way she presented the issues around prenatal testing, have been planning on writing about it but my “want to write about” list is getting so long!

    While I would not choose abortion, I am pro-choice, but I have gone back and forth on whether or not we would choose to do any testing should we have another child. One part of it for me is to more accurately assess medical needs. I know many families with birth diagnoses who could have been more prepared had they known about the Ds. But, this coming from a woman who refused all testing for all three of my children (not even an ultrasound). Very complicated.

    • Rob Arnold

      Jisun,

      Thank you for the insightful comment. I have not read Theresa Shea’s book; I will have to check it out. One of the complexities of writing about this topic for me is how it is closely connected to the pro-life/pro-choice debate. I think it would be easy to get the two issues twisted together and not do either justice so I have tried to stay away from the abortion debate.
      As I stated in the post, personalities play a big role in this decision. For some having the extra-time to adjust to the idea of having a child born with Down syndrome might be helpful. My concern is that (at least for fathers) the connection is not there yet between the child and the parent. Things are so different when you are holding that little baby. Also, the idea of Down syndrome is so foreign that it seems like it would cause more grief than good. But again, that is coming from my personality type. However, if I could be convinced that advanced notice would improve the care the child would get then I would certainly be in favor.

      Thanks again,

      Treyton’s Dad (Rob)

  3. Alice

    Hi Rod,

    My daughter was diagnosed with a cleft lip and palate at her 16 week ultrasound. That was the only test I did (apart from general blood work) during the whole pregnancy. I was going on 36. The sonographer berated me for not having had an amniocentisis “at your age” – went on to say -” would it be the same to you if your child has something like Down’s Syndrome?” – and then went on to say “who knows what this might be correlated to”. He gave me the phone number of a geneticist and told me I had two weeks remaining if I wanted to consider abortion – for a cleft lip and palate!

    I know, this is absolutely THE worst case scenario – and I can laugh about it now. It was an abusrd situation, but devestating.

    I went to a wonderful study day organised by the BMUS (British medical ultrasound society) and CLAPA (a UK based cleft lip and palate association). The aim of the day was to bring together parents and sonographers to discuss the problems and point of view of each group and to bring us together. The day culminated in us drawing up how we thought a diagnosis of cleft lip and palate should be delivered – and, wonderfully, by the end of the day, we were all in agreement, sonographers and parents alike.

    What I don’t think I managed to get across (I only stood up and intervened in a few brief sentences) was something that I later discovered confirmed in by Andrew Solomon says so eloquently in his TED med talk (haven’t yet read the book FFTT – it’s on my list) – that a diagnosis of a ‘malformation’, a syndrome or sequence is not bad news. It’s difficult news – it’s news that needs to be delivered tactfully – but thinking of it as bad news, in my opinion, makes it harder to accept.

    Thanks to internet, we get to hear each other’s stories. I think future generations of parents will go into prenatal testing with wider eyes, more idea of what differences may be discovered, and what living with those differences mean.

    We have to keep talking, and we’ll get there – the world will get it:)

    Do you know the story of Bloom? It’s wonderful! http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

    Alice

    • Rob Arnold

      Alice,

      I am happy to learn that you have found the ability to laugh at your experience now but that is truly and awful experience! It is also encouraging to know that meetings such as the one you participated in are happening. It is a step in the correct direction.

      I have not heard Andrew Solomon’s TED talk but I will have to look it up. His book, Far From the Tree, was an intense book and a little tough for me but worth the effort. The main idea, as I see it, is that of “horizontal identities.” When a child is born with something like an extra-chromosome as in Down syndrome, that child develops in such a way that is completely different than the parent and the “norm.” The parent and society has a choice to view that identity as something unique to be valued or as a type of defect that needs to be fixed.

      It has been months since I finished the book but I am still thinking about it on a regular basis. Also, yes, I have read Kelle Hampton’s book Bloom.

      Thank you for you comment and sharing this part of your story.

      Sincerely,

      Treyton’s Dad (Rob)

  4. Kathy Dettwyler

    Hi there. I’m the mother of a 28 year old son with Down syndrome. He was the next child born with Down syndrome at Bloomington Hospital in Indiana, where Baby Doe was born and died. Same set of ob/gyns as the group that included the doctor who told Baby Doe’s parents that their son would never walk or talk or know that they love him, or love them back. It was definitely an interesting experience to be the next family with a newborn with Down syndrome. We were treated very strangely until we signed the consent papers for the surgery he needed (Baby Doe’s parents refused to give consent for their son’s surgery, and withheld food and water until he died after 10 days). Not everything about being a mother is easy — whether your child has DS or not. But Peter walks, talks, eats with gusto, likes Jon Stewart and American Idol, and I can’t imagine life without him. None of us in his family would be the same people we are today if we had not had Peter in our lives for the past 28 years. We are all the better for it. Bravo to you and best wishes to your family.

    • Rob Arnold

      Thank you for sharing your story, it does sound like Peter would be a lot of fun to be around. I cannot imagine what it would have been like to be in your shoes at that hospital. It was not that long ago that I first discovered the story of Baby Doe and was appalled by it. I wrote a post called the Face of Down Syndrome http://wp.me/p27Y8K-MA because of that story. Also, as the father of a 4 year old little boy I want to offer my appreciation to you as well as all parents that have older children with Down syndrome. The world is a different place for my son because of you. We have a long way to go but you have helped to open a lot of doors for my son. I pray that someone will be able to say the same for me some day.

      Sincerely,

      Treyton’s Dad (Rob)

  5. Pingback: Down syndrome Book Review – The Unfinished Child | Treyton's Posse

  6. Stacey Lemaire

    I’m 14weeks pregnant at age 40 with my 6th child I miscarried 2 yrs. ago I have four children now and a surprise baby on the way and I’m planning to have a new test they have now were they can draw my blood and find my baby’s blood mixed with mine and isolate it to test for Down syndrome. My 8 yr old was found to have a thickened neck fold during an ultra sound so I decided to have an amnio as that was the only way at the time to test and know for sure. For me I’d like to have time to prepare although I am already reading some on the subject so I’m somewhat prepared for the possibility (My 8 yr old ended up not having Down syndrome) but was diagnosed with Tourette’s at age 7. Dad is with me …if in fact this child does have the disorder we will not be choosing to terminate the pregnancy. Your sight is very empowering and helpful It gives others hope and a place to connect with others so they are not alone Your son is beautiful his spirit shines through in his pictures This is a good thing your doing for him Thanks for your inspiring words

    • Rob Arnold

      Thank you for your taking the time to share your story. I wish you the best with your pregnancy. Also, if you do find out the baby you are carrying does have Down syndrome I hope that knowing ahead of time does help you. I think my wife would want to know ahead of time as well. I hope you can see from Treyton’s Posse that having a child with Down syndrome is not what you would expect. People are beginning to realize that when you don’t place false limits on a person with Down syndrome the sky is the limit for them!

      Sincerely,

      Treyton’s Dad (Rob)