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

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Oh man! It just erks me when I hear about things like this! When I was pregnant with Jayden, I opted NOT to have an amnio to confirm that he had down syndrome because it didn’t matter. I wanted him anyways! Whoever the Lord sent me is who I was suppose to have. I HATE that they let parents abort a baby just because of down syndrome.

  2. Its maddening! And our state seems to be one of the worst. Like when I found out Utah opted out of the Katie Beckett waiver, thanks for a whole lot of nothin!

  3. this is so sickening!! I was just posting on my son’s CaringBridge (http://www.caringbridge.org/visit/braydenharper) this morning about how wonderful it would be to raise awareness about hydranencephaly to help protect the little ones who are not given a chance at life, but rather a sentence to death. In my post, I compared to the history of children with DS and how far we’ve come… I didn’t realize that we haven’t come as far as I expected.

    So, so sad… thank you for further enlightening me. Sounds like we have a very long way to go for all disabilities in children, regardless of severity, circumstances, or percentage of occurrence. May all our extra special little ones be given the chance at life that they deserve…

  4. As the adoptive parent to someone who is now medically fragile, I want to puke.

    Our son would be Baby Doe.

  5. When my son experienced delays in his development I fought tooth and nail to get him the services that he needs. At the age of four we *finally* had a diagnosis after spending hundreds of visits in the ER and pediatricians office. Lennon is still delayed, has a feeding tube, diet restrictions and while medical stable currently is still recovering and potentially facing additional medical procedures to save his life. When the doctors first diagnosed him I was lucky enough to find employment with the ARC. It saddens me, and angers me that individuals still stereotype and choose not to embrace the challenges of our children no matter what their ailments might be. It infuriates me that there are still people in the world that would end a child’s life because to them they aren’t perfect? Lennon is perfect in every way despite it all, and individuals with disabilities are a blessing because they have so much to give and offer. I may not live in Utah, but the problem is the same in Virginia! I was heartbroken the other day when I was told Lennon could go swimming but should wear a shirt so people won’t stare at him for the tube or his big scar. Lennon has placed me on the path to educate others!

  6. Holy cow. I’m speechless. Not surprised, sadly, but speechless.

  7. We felt outrage at the neglect our son, Nathan, received after his birth. He was set off to the side of the nursery .. in an isolet to die. If not for the intervention of two weary parents … and one angel of a social worker .. our special gift would not be here today. Praising God for getting out the message about the cruelty to our most vulnerable gifts!

  8. Like others, I want to vomit. But I’m not surprised. As we lead this country further and further away from God, we also move further away from valuing life… My brother was born with cerebral palsy and some other issues and the doctor actually told my step-mom “I don’t know why we bring children like this into the world”. Apparently some people are only able to love their children if they fit into their own little mold of what *they* choose to be perfect, not what *God* chooses.

  9. Steph says:

    So sad. I’m thanking God for all the families and doctors out there who think our kiddos are as important and valued as the next “normal-perfect-healthy” child. Of course I consider Joey “normal-perfect-healthy” too…if I didn’t I would be slapping the Big Man in the face. We, the USA, aren’t as bad as other countries though unless there is something I’m missing. Where Isaiah is coming from those with disabilities are forbidden to walk the streets. Every now and then you get a brave family who chooses to raise their child. That is why orphanages and institutions are full of children with disabilities.

  10. Tammy,
    Paige was born with this exact birth defect, and Down syndrome just like Baby Doe. She has had more than 25 surgeries in her 13 years of life – a thought that might scare even the most seasoned parent. But, our lives are filled with joy and accomplishment, and happy, sunny days. You get through the tough stuff, and you celebrate the good stuff. And the good stuff is always that much sweeter…

    At their most vulnerable time, when they needed to believe in something, these parents were told the worst of the worst, given no hope at all.

    Hope and faith are beautiful things, and from them, come Brave Heroes, right?

    (((hugs)))

    Betsy

  11. I’m aghast and dumbfounded. Just sitting here in jaw-dropping disbelief. I don’t know what to say other than that makes me sick!

  12. Wow. All the way across the board. Wow…I’m speechless. Saying a prayer for Baby Doe and others like him.

  13. I’m not a parent, but that story makes me sick too.
    Of course there was just one the other day where a “doctor” in Florida attempted to abort a baby with DS in a twin pregnancy, and got the wrong baby. He then aborted the baby with DS as well. Aborting just the baby with DS would have been “fine” but aborting the wrong baby was cause for him to lose his medical license.

  14. This just makes me want to cry. With a newborn sleeping behind me I just can’t imagine the pain and suffering of that little guy. How horrible. And we call ourselves a “civilized” nation… ugh.
    Thanks for all you do Tammy!

  15. Lisa in Elijahland says:

    I’ve done some reading on Peter Singer, so I’m not really surprised by this. Sad and disgusted, but unfortunately not surprised. It makes me want to vomit.

  16. I had an ethics professor argue that it was unethical for people NOT to abort their children with disabilities because it was such a drain on society. I wanted to punch him in the nuts. We do have a long way to go. Our kids make the world a better place.

  17. Nancy says:

    Just sick…………all of it…….God help our society…Mother Theresa has said, “A nation that kills its own children cannot survive.”
    When a life no longer is valuable in the eyes of ANYONE, where can we turn to?

  18. Oh my goodness. Our children have SO much to teach us and more importantly the selfish people that you indicated in your post. Oh how the small ways of working with our local DsOutreach and Parent 2 Parent might help educate.