Down syndrome from a father's perspective.

The face of Down syndrome

Earlier this week I came across the story of Baby Doe from Bloomington, Indiana. Baby Doe was born on April 9, 1982 and died seven days later. Since learning of this tragic story I have had a difficult time blocking it out of my memory. It is so full of wrong, negative, damaging assumptions about Down syndrome that I cannot stand it. It is time for a new face of Down syndrome.

Baby Doe’s story

I discovered the story of Baby Doe as I was doing some brief research about National Down Syndrome month. What I learned was that Doe, a baby boy, was born with an esophagus that did not allow food to get to his stomach. The baby needed a surgery that was serious but certainly one that was within reason. However, because Doe also had Down syndrome the parents decided against the surgery and allowed the baby to starve to death..

I can understand the fear the parents experienced upon learning their baby boy had Down syndrome. Those of us impacted by the chromosomal disorder know we exist in a different reality than most. But to choose to allow your child to die is beyond my comprehension. On top of that, I am perplexed by the fact that the parents were encouraged by the doctors to forgo the surgery. The “icing on the cake” is the fact that all of this took place when there were families present wanting to adopt Baby Doe.

I need someone to help me understand what the parents and doctors were thinking. I could understand if the parents decided to give the baby up for adoption because they didn’t think they could handle the special needs. But for the doctor and the parents to decide that it was better to let this little baby starve than to allow other families to care for him is unthinkable. What were they afraid of? What sort of ignorance could blind these people so badly to think that it was better to allow a baby to die than to allow a child with a disability live. They must have thought that Down syndrome was something really bad.

NOTE: Those of you that have donated money to Treyton’s Posse as we Step Up for Down Syndrome are helping to provide parents with accurate information about Down syndrome. When a child in West Michigan is born with Down syndrome the parents receive information from the Down Syndrome Association of West Michigan (DSAWM) . Making sure that parents have good information is crucial and your donation helps to support that service.

What do you think of when you hear the words Down syndrome?

I am a different person now than I was before Treyton was born. Before I did not know much about Down syndrome nor did I ever really think about it. The little bit I did know came from either television or from some vague memories I have of a girl I met once or twice when I was 6 or 7 that had Down syndrome. I would wager a guess that my prior experience with Down syndrome is like most.

The type of personal knowledge I had is not enough information to come to any type of conclusion about those with the disability, yet, that is what happens. In the world of human resource management there is something called the “halo effect.” The halo effect can occur when a manager looking to hire a new employee allows one good trait to over shadow the bad traits of the potential employee. This can also happen in reverse. If a manager allows one bad trait to over shadow all of the good traits of a potential employee the “horn effect” is said to have occurred. Making assumptions about people based on limited knowledge is rarely a good idea.

Time for a facelift

When I learned that Treyton had a third copy of the 21st chromosome (Trisomy 21) everything I had previously believed about Down syndrome was erased. We were no longer talking about a hypothetical situation, we were talking about my son. Treyton opened my eyes; he showed me that I was unknowingly holding people back with my ignorant assumptions.

I have learned that when you get to know a person for who they are you see them as a person first and then their unique qualities and characteristics add color and depth to the picture. You don’t see the hue of their skin you see a friend or coworker. You don’t hear the accent but appreciate the different experiences a person has had. You don’t see a disability you have a friend that learns a little differently than you.

That is why I walk

On Saturday, October 13 my family and I will be participating in the Step Up for Down Syndrome walk put on by the DSAWM. I have been raising funds as part of this event that will go to support the association. Participants of the event are starting to share their motivations for participating – their reasons for walking. Now you know why I walk. I walk because whenever you hear the words “Down syndrome” I want you to see Treyton’s face. I don’t want Treyton to be reduced to his disability; I want you to see the amazing kid that he is and then the next time you meet someone with a disability you may start to see the person before you see the disability.

Rob Arnold has been married to his high school sweetheart for almost 19 years. Together they have three daughters and one son. He earned his bachelor's degree in General Business from Grand Valley State University as well as an MBA in Strategic Management from Davenport University. He enjoys reading, hunting, scuba diving, and spending time with his family.
  1. TUC

    The first time I read the story of Baby Doe, I cried. They could see his face. They could see all of him. They could hear him and smell him. And yet their fear of his differences overrode all of that… Walk on friend!

    • Rob Arnold

      I really cannot fathom it. There were people willing to adopt this little baby. Yet they chose to let the child die.

  2. Martha

    Wow! That’s all I say. When my Shane was admitted to the hospital I was asked if he was a full code or did I want to claim a do not resuscitate for Shane.
    Is this common? Was it because he has Down Syndrome? We had been previously admitted to the same facility before and was never asked that question before.


    • Rob Arnold

      What a question to ask a parent! I do think there is still a lot of ignorance out there about Down syndrome. People do not realize that a person with Down syndrome has so much more potential, so much more to offer than s/he is given credit for. Even if that was not the case, what about the sanctity of every human life?

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