Quantify This

That ABR post will have to wait another day or two because today I’m mad as hell and I’m resorting to my favorite therapy–blogging.

By now, you have probably heard about a little girl named Amelia who was denied a life-saving transplant (from a family donor) because has been diagnosed “mentally retarded.”  If you haven’t heard the story, you can read her mother’s own words here although sadly, my description sums up most of it. The doctor’s reason behind denying the transplant was that Amelia had a poor quality of life.

There were a hundred things racing through my mind as I read this story–fear, disbelief, disgust–but the quality of life thing is what sticks in my craw. I am sick to death of other people looking at my child, or any child with disabilities, and determining what the “quality” of his life is. My son cannot walk or talk, but he smiles every day. He laughs easily. Throws temper tantrums like many four-year-olds, and he likes toys, television, and his iPad. He adores music and can recognize a song within a few notes and could from an incredibly young age. I began teaching him to read this summer, shortly before his fourth birthday, and I am slowly adding words to his vocabulary (in between bedrest, having babies, therapy, school, dinner, cleaning, and getting pregnant again).

He is LOVED. When Charlie was born sick and in the hospital, I felt like the whole world was praying for him. For four years he was the only child and the only grandchild on both sides of the family. He is doted upon and spoiled more than he should be–for crying out loud, I don’t have an iPad! At school he is greeted by a multitude of adults and children who have taken him into their hearts–at recess they actually have to shoo children away because a crowd gathers around him. Other students watch for him each morning to make sure he’s arrived on the school bus.

His life is RICH. Charlie has traveled internationally. He’s been to Disney World. He’s put his toes in the sand in Florida and chomped on chips and salsa in Texas. He’s eaten in some of New Orleans’ finest restaurants. He goes to outdoor concerts, rides horses, has his own TV, DVD player, and the aforementioned iPad. He has a bureau full of clothes, and ones waiting for him when grows into the next size. He has cuter shoes than I do. He has so many toys that we still have some in boxes waiting to be opened.

He is CARED FOR. His father and I talk regularly about his future. We think about where he will live as an adult. We have plans for how our house will be remodeled to suit him in the coming years. We have life insurance should we pass away too early to carry out all of our plans.  We have also been blessed with two other children and have a fourth on the way. We hope that they will help to care for Charlie when he is older–if he should need their help.

For years I taught children with a poor quality of life. These children could walk and talk like everyone else–they could read out loud and solve math problems.

But their lives were full of violence, loss, and poverty. I taught children who were all to familiar with drive-bys. I taught children who were freezing in their beds at night and then falling asleep in school the next day. I worked with girls who passed out in the hallways at school from malnutrition. I met children who would go days without seeing their parents. And those whose mothers forced them into gangs before they even started high school. I stood in houses with no beds and rat poison lining the rooms. I knew far too many children whose parents were children themselves.

THAT is a poor quality of life–not the inability to walk when the world is full of people willing to carry you. It is not the inability to speak when there’s an army there to advocate on your behalf.

The quality of life issue is just an excuse. It’s something people tell themselves when they do something abhorrent to people who can’t defend themselves. It’s a balm people allow to ease the pain of what they know is discrimination. It’s a falsehood and it’s time for it to stop.

My child’s life is beautiful.

My child’s life is valuable.

His worth cannot be measured.

boy wearing headphones and smiling at the camera

I know I am not alone in my beliefs. Sunday Stilwell has put together a petition urging CHoP to reconsider their decision to not grant Amelia her life-saving transplant. You can sign that here. You can also let CHoP know how you feel on their Facebook page. The most important thing you can do (in my opinion) is let people know how you feel about this story. People with disabilities deserve the same medical treatment as everyone else. It’s time to speak up.

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Comments

  1. Amen. It is all I can say. You know, or have to know how I would feel about this. In this country, in this day and age, to even know that this is happening to this beautiful little girl, is just beyond my scope of understanding. That there are people that are willing to step up and help to save her life and this hospital being unwilling, should in biased opinion, is criminal. I do not know how these people look themselves in the mirror? Could they/would they, be willing to look at a loved one of theirs and deign to say the same thing? It makes me so upset. I hope that they change their line of thought and do the right thing by this child. She deserves no less than any other person who needs medical care. Children are children. Care for them. Because it is the right and proper, thing to be done.

  2. Beautifully written. Shame on that doctor and social worker. Shame on CHOP.

  3. Beautiful pot! I just… I can’t even… How?! How is this legal?! I can’t believe they can just say no.

  4. *post. I can’t even type through the rage!

  5. *post. I can’t even type through the rage!

  6. AMEN. and AMEN again. You hit the nail on the head. Our children have an AMAZING quality of life. They are SO loved and spoiled. I agree 1000%. Good for you Katy!

  7. Perfectly said. Your point about discrimination is right on.

  8. Thank you for putting into words what I want to say but can’t, because I am so angry.

  9. Marlene Hunter says:

    I dislike docters and hospitals, if you have insurance they like you, if you don’t they kick you right out instead of admitting you when you need it, sorry we can’t help you. Even if you have insurance they pick and choose, it’s unbelievable! I pray Amelia gets what she needs.

  10. Amen.

  11. OMG can I get an AMEN?!

  12. Thank you Katy for this beautiful post! I have added it to Amelia’s petition page.

  13. I knew you would say what I couldn’t. I’ve been struggling to find words for the emotions I feel about this. You wrote exactly what I feel: the part about not being able to walk and talk determining quality of life, rather the people around you, and the world you are living in. I work in a school. I’ve seen it all. Quality of life can not be measured by IQ or physical abilities.

  14. I emailed the doctor and asked him to reconsider his position baluarte@email.chop.edu

    I hope that helps! 😀 It is a shame that people can pass judgement like that.

  15. This is SO WELL WRITTEN. You make perfect points on assessing the “quality” of peoples’ lives. I can not believe that a child would be denied a life saving procedure because a Doctor has a value system that encompasses such a narrow view of a life worth living. It is barbaric.

  16. you said it!
    so awful i can’t even think!

  17. A blasphemous outrage and a violation of the Hippocratic Oath; it’s among the more blatant injustices to disabled and part of a host of more subtle injustices. Here is a link to a great commentary on organ donation and the disabled…the most comprehensive I have read and also lays out an action plan for those who want to do something.

    notdeadyetnewscommentary.blogspot.com

  18. Andrea S. says:

    Fantastic post. I read about Amelia’s situation on another site too. It is sickening. I mean, should we not give our kids seizure medication or other similar meds even if a doctor thinks no one else in the world will help them take it if/when we are gone?? How do you accurately measure cognitive ability in a child with mobility, speech, or other issues when the tests are not designed for such a child? Where exactly is the cut-off point? Since Amelia’s family is willing to donate a kidney, all we are talking about here is spending hospital and doctor resources. Ridiculous.

  19. Is there a way to put this post in a syndicated column? Your perspective, Katy, and the fluency which it is written makes a profound ethical and moral argument. Reading this post could inform those people that either haven’t considered the definition of “quality of life” or have only considered “quality of life” in scientific terms. My husband and brother are both medicals students and I intend to make sure they read this and disseminate this information to their peers. They take classes about medical ethic but it doesn’t approach subjects of this import.

  20. One of the special needs kids I know probably has the greatest quality of life of any person I know. She is blessed to have a huge adopted family that helps her mom to watch her, even besides her loving mom and four sisters and probably 30 cousins. She has the wonderful ability to see the fun and joy in everything, to dwell less on the hard and sad parts of life, and to smile at people when they need it most. Honestly… I think her quality of life is better than most!

    I really like the way you have written this, and the way you are always realistic yet relentlessly positive in your posts about Charlie. For someone like me who DOESN’T have a special needs child, it gives me a view into how it can be wonderful despite being so difficult sometimes. Thank you!

  21. Amen, sister! You said it so well. I posted it to FB as well. Thank you!

  22. another thing: get a different doctor. stat!

  23. Perfect! Great expression and a beautiful expression on what “quality of life” really means!

  24. Beautifully written. I agree with you wholeheartedly.

  25. This is why I love knowing you and reading your words because your perspective is invaluable. YES!!!!!! To all you said. I signed and tweeted. I hope she can get the transplant she needs and DESERVES just like anyone else.

  26. Wonderful post, Katy. I love you! And I love Charlie! Thank you for working so hard to educate people who really need it!

  27. I think this is one of my very favorite posts. What does quality of life mean anyway? And wouldn’t everyone have a different answer?

  28. So good. So so good. My mother works for a small accounting firm, and the owners have a daughter in her twenties with Downs. She is a beautiful, cheerful woman who comes in and helps out in the office three days a week, who volunteers at the local nursing home playing piano for the residents (yes! she can play!) and who is beloved by everyone at her dad’s company, not to mention her family. Knowing her, and then knowing that eighty percent of unborn children identified with Downs are aborted, makes me want to cry. We humans are so good at cutting ourselves off from our own humanity sometimes.
    Ignorance is the enemy, I guess. If people have never been around anyone different than themselves, their only idea of a “quality” life is one exactly like their own.

  29. Well said. I have signed the petition and I wrote a post about Amelia yesterday. To all who this may concern: I have Cerebral Palsy and my quality of life is great I can’t walk that is true but that doesn’t mean my life is any worse than yours and that my life has less value than yours.

  30. Just because Amelia’s mom is obviously a devoted mother does not mean she can report clearly and accurately on such as emotional subject. There are 2 sides to every story, and all you read is one. I did a little (like 15 minutes) research on the issue. That was all it took to learn that CHOP HAS done kidney transplants in other mentally handicapped children – and had excellent results in most, if not all, cases. That means that mental capability is NOT the sole factor in the decision, despite what Amelia’s mom said. Seriously, CHOP is one of the finest children’s hospitals in the country. You think that they would actually refuse the surgery on such a flimsy basis? Just for starters, Amelia’s condition means that she has a very high chance of dying in surgery. How does that meet the criteria of “do no harm”?