Monday, September 3, 2007

Letting Go: They Loved Him to Death

Note: I want to thank Valerie Brew-Parrish for sending me the Denver Post article. She wrote an article about "disablicide" for the Joliet, IL paper that included Dylan and a journal later picked it up. She sent me the link after I published the Ruben Navarro piece. Thanks Val.

We do not have to wonder how four-year old, 32-pound Dylan Walborn died. We have the whole picture… the full Monty… complete with a nearly 11,000-word story, two multi-media presentations, message boards, and opinion, all brought to you by the Denver Post.

Dylan had a stroke while in utero causing him to have cerebral palsy (CP). He then defied a medical opinion that he would die in his infancy. The article describes Dylan’s CP as an “overarching term for a condition that left him virtually blind, deaf, immobile, and unable to communicate or perform any voluntary function.” He had a tracheotomy and a feeding tube.

Kevin Simpson a Denver Post reporter wrote, Letting Go. Photojournalist Andy Cross also assisted. It appeared in the October 28, 2006 edition. For his work, Cross received a runner-up journalist award for documenting what it is like to “slowly lose a child.”

The term slowly is accurate; it took 23 days for Dylan to die because of starvation and dehydration; “lose a child” is not at all accurate.

He did not run away at the mall. No one kidnapped him at night. He spent all 23 days in his mother’s apartment, with his parents, and a reporter documenting the entire ordeal. Dylan’s parents, Kerri Bruning and Dave Walborn perceived his bad days outnumbered the good, they spoke with the physicians and ethicists at Denver Children's hospital; then made the deadly decision to withdraw food.

Ministers, grandparents and others came to the apartment throughout those 23 days without food. The article describes visitors coming ‘in waves”. Dylan’s grandma even threw a little party in his honor, the day before they withdrew food.

Questions and Inconsistencies

This story is another example of under the eye of the medical establishment, including ethicists, parents take the life of their child with a disability.

Where was Dylan’s advocate in this process? No one stepped in to represent the child’s interest, or to even question if Dylan had a right to his life. He was not dying. The only thing threatening his life was the starvation forced upon him.

On one hand, the article discusses Dylan’s inability to have any voluntary function. On the other, it says his face indicates he is in pain and that it shows he is devoid of joy. People in Dylan’s life interpreted his life as not worth living, then used the perceived involuntary muscle movement as documentation of their own bias.

Dylan’s seizure activity was on the rise. The article argues that adjusting and/or increasing his medication is a less desirable alternative than dying. The journalist describes Dylan’s seizure activity mentioning he sheds tears when he has a seizure. It does not say studies show that tears while having a seizure indicate he has a certain type of seizure. There are also other reasons why his eyes may tear. But the write wants us to believe it is a justification for killing him.

The article discusses Dylan’s brain damage; but fails to ask if he was brain dead. What did Dylan actually see, understand, or want? He will never get the opportunity to answer that question. Did any one conduct a speech evaluation to see if assistive technology could reveal his potential for communication? Children who have had severe stokes have been able to retrain unaffected parts of their brains to take over functions affected by the stroke with intensive therapy. Did Dylan get that chance; or did the doctor write him off?

Options

Our medical system makes life as hard as possible for parents of children with severe disabilities. However, there are options.

If his parents no longer wanted or were unable to care for Dylan, they could give him up. Does that sound callous? It is certainly far less callous than withdrawing food. Physical, mental or financial exhaustion is no excuse for killing your child.

People will say, "It's wrong to ask a parent to give up a child they love." And I agree, to a point. The point ends when that love leads them to want to kill the child. We hear the argument in adult relationships a lot. A man kills his wife/significant other, because if he cannot have her, no one can. People with disabilities can live without that kind of love.

In August, I saw a news story about Brook Barels. She is six, has CP and wants to walk. The family (who could not afford it on their own) and friends raised enough money to take her to China. They are treating children with CP with stem cells to give them more control over their bodies. Three months after her first treatment, she is walking with a walker. Before she did not have the ability to stand, even with support.

In April 2007, a Hungarian teenager saw swift gains in his ability to walk, write, focus his eyes, and concentrate after receiving cord-blood stem cells. It is all documented in unedited before and after videos. Does this sound like dreaming? If parents of children with disabilities will not dream for them, who will?

I'm not suggesting that parents of children with disabilities should run off to China for stem cells. I'm saying, if you're considering killing your own child with disabilities (or any other child) because you perceive he should not go on; STOP!! It's murder. There are other extreme options to consider first. His life belongs to him. not you.

In the end, Dylan had no options because no one gave him any.

In a sidebar to the main article, Dr. Stefan Mokrohisky, chair of the ethics committee at Denver's Children's Hospital says, "I guess you could say that even the medical intervention to provide the nutrition is no longer a benefit when compared with the burden of current existence."

"...Compared with the burden of current existence." Whose burden is he talking about? A mother's caregiving burden? Society's financial burden? The burden of putting food down a feeding tube? All of the above?

It has absolutely nothing to do with the humanity and basic civil rights of a tiny four-year-old boy with disabilities.

7 comments:

Kim said...

This is horrifying to me.

Thank you for posting it ~ it verifies my opinion that many medical doctors have little or no respect for the lives of children with disabilities. This opinion was formed while I was sitting in the NICU next to my severely handicapped child almost 11 years ago. The doctor told me to "let her go...you are young. You can go home and make a healthy baby."

I almost threw up. Then I told him to get away from my daughter, and to never set eyes on her again. He was the head of the Cardiology department at the time. Madalyn has Cornelia deLange Syndrome. She doesn't walk or talk. She's fed through a g-button. She's had numerous surgeries. We went bankrupt caring for her medical needs. We've never had another child, despite years of trying.

I love her more than anyone on earth. I would die for her. No one will ever tell me that her life hasn't been worth living. She brings such joy to me, to her dad, to her extended family, to her school mates. She's been a teacher and a healer. I've learned things from her that would have taken me decades to accomplish without her in my life.

Despite the diagnosis (from a myriad of doctors and surgeons) that she would never live to see her first birthday, much less her fifth, we are currently planning for her eleventh birthday in November. I can't wait.

Is this life hard? Not to me. I think it's much harder for her, to be trapped in a body that won't do what she wants it to, when she wants it to. Besides, I don't know any other way to parent. My husband and I don't want any other children now ~ we want to lavish our love and our resources on *this* child.

I also live with chronic pain ~ from a back injury (work related) and chronic migraine. I have it easy compared to Maddy. Neither one of us is finished here yet ~ when we are, the universe will take us to the next thing. On days when I feel sorry for myself, I can look at my spunky, laughing-through-the-tears daughter, and know that no matter what, I can make it through. For her. For us.

Again, thanks for raising the questions.

assistive technology said...

This is terrible, since we have enough technology to do something about these cases. Hundreds of years ago, this would have been an accepted alternative to the use of resources, but this isn't the Dark Ages any more.

misscripchick said...

it's so scary. i told myself i'd never move to oregon because of the fear of being pushed to have assisted suicide but euthanasia is everywhere. it sickens me that the media was involved and glorified it, without no one saying a thing.

Attila The Mom said...

Just heartbreaking. And horrifying. Thanks so much for posting this.

Anonymous said...

I stopped being a Democrat largely because I was sickened by their hypocrisy over Terri Schiavo. I couldn't understand why Democrats weren't standing up for the disabled....I hope many people will continue to see that euthanasia is about about human rights.

Betty said...

This was a wonderful post. When I was born my mother was told I had 2 days to 2 weeks to live. That was over 17 years ago now, and my only major problem currently is my need for a kidney transplant. Actually that's not bad considering that I went 15 years without needing one. I have heard of so many cases like this. A lot of uninformed hospitals still tell parents of children with my disease that they should abort or not have any hope at all because they're children will not make it, no matter what. There are actually cases of the doctors telling the parents to take the baby home and not feed it and it will die in a few days. One case I heard about the parents did this, and after about 5 days the parents called a specialist and asked "We were told not to feed our baby and haven't for five days. Why isn't he dead yet? When is he going to die?" Sadly enough that was probably one of the babies that could have made it if it hadn't been starved. Anyway, thanks for posting this article, this is really something people should be informed about.

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