We Still Have Far To Go: The Story of Baby Doe

April 9th marked a quiet sort of anniversary.

It would have been Baby Doe’s 28th birthday.

would have

If just for a bit of compassion.

A bit of courage.

Baby Doe was born without his esophagus, a totally repairable condition with a 90% success rate.

While most parents wouldn’t question the surgery, Dr. Walter Owens, the parent’s physician, advised them that they could choose to do nothing about treating their son’s esophagus, ensuring their child’s death.

You see, it wasn’t so much the lack of an esophagus that was seen as being insurmountable, it was the Down syndrome that Baby Doe was born with.  The possibility that Baby Doe could grow up to be nothing more than one of the  ‘mere blobs’ Dr. Walter Owens spoke about.

Based on their doctor’s advise, the parent’s chose to withhold care.

Attorneys for the hospital and for families wanting to adopt Baby Doe sued for court ordered medical treatment.

(Did you see that?  Families WANTING to adopt Baby Doe sued for court ordered medical treatment.)

Doctors testifying gave contradicting opinion from Owens, saying that care should be provided to this living human being who had a medically treatable condition.

And where was Baby Doe during all the testifying?

Pushed off into a corner in the hospitals nursery.  Dehydrated and legally blocked from any physical care at all.

The judge ruled that the parents were within their rights to choose to withhold care.

Six days old and Baby Doe was dead.

Stories like this are like a punch to the gut to me.   I fly back and forth from a feeling of rage to wanting to protect Parker….never letting him out of my arms.

Because if you think this kind of stuff couldn’t happen in today’s world, well, you going to want to think again.

In the 2009 Russian article entitled “Finish them off, so they don’t suffer”, the author argued that

“parents should have the right to “post-birth abortions” for those children they do not want because of the child’s disabilities. In an interview, he stated, “I don’t want a baby with Down syndrome,” and that he should not be stopped from avoiding having one, even if that child was breathing in the next room in a nursery.:

And don’t think these opinions aren’t found here in the US either.  Peter Singer, a professor of bioethics at Princeton shared the same views about the right of postnatal killing in the case of disabilities.

Several weeks ago I received a few emails from parents of children with disabilities living here in Utah.  Each one of them expressed anger over what they felt was our state legislature’s lack of concern about it’s weakest citizens.

It seems as though participating in standing ovations for colleagues who finally admit hanging out drunk and naked with 15 year olds, voting in watered down ethics bills, and an overwhelming need to point to themselves as ‘self made successes’ is more important than the life of a child with disabilities.

We  still have a  long way to go.

At least it feels that way sometimes, no?

What are the ways you try to make the world a better place for YOUR child with disabilities?  Because I truly believe that together we can make a difference.

And I’m not the only one:

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.
~Margaret Meade


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