There is something that's been in the news for the past few days that got me thinking. Most of you have probably already heard about it. The parents of a brain-damaged child made the decision to have radical surgery done on their daughter, Ashley, to prevent her from growing, a hysterectomy to keep her from having periods and removal of her breast buds so she would not develope breasts. She will, in essence, be frozen in time. She will never grow any taller than 4'9" and will unlikely ever weigh more than 90 pounds.
Initially, it seemed Mengelesque and I was appalled. It sounded like something straight out of The Third Reich but I began to look at a few more facts. In no way am I a medical ethicist and don't claim to have knowledge anywhere close to that. However, I can reason out facts when I see them.
Ashley was born with static encephalopathy. She will never have cognitive functions higher than that of a 3-month-old baby. She is unable to feed, bathe herself or be potty-trained. Her body will develope as any other body without intervention. She will require lifetime care. She is nine years old now and is expected to live a normal lifespan.
So what is the most loving thing to do for Ashley?
While hand-wringing and slippery slope arguments are presented on TV shows such as Nancy Grace and Fox News, comparing her to Terri Schiavo, the fact remains that if Ashley grows to normal height and weight, she will be confined to a bed. As her parents age, she will unlikely be able to stay home and will spend the rest of her life in a nursing home. She will have uncomfortable periods every month without any means of communicating that. She will have breasts that will make her uncomfortable.
I also don't think it's right to run the risk of having her quality of life reduced because maybe, someday, new scientific developments will come that might, maybe, cure her in the future.
The reality is here and now. If she is normal-sized, no one will be able to lift her, carry her or cuddle her. It will be harder to remove her from her bed to take her outside.
In my personal opinion, the surgeries were the best way to make it possible for Ashley to have some quality of life.
In general, I don't trust medical ethicists in a culture that values profit over people. I am the closest thing you'll likely find to a conspiracy theorist without completely crossing over to the Dark Side. Yet, I can find nothing of substance in the slippery slope argument that says "allow this one day, Soylent Green tomorrow." Even I don't believe this culture is that evil.
What I do see is that by taking these radical actions, her parents or their designated caretakers will be able to care for her longer. It will allow her to be relatively pain- and discomfort-free. It will allow her to be physically manageable. It will allow people to carry her, cuddle her, take her outside and make her comfortable and, hopefully, happy.
This time, I'm with the parents. I can't imagine any other way.
Peace,
~Chani
13 comments:
I have to think a bit about this one. The first thing that strikes me is how horrible it must be for the parents to be in such a situation. This story, as are so many others involving the care of loved ones who can't take care of themselves, is heartbreaking.
I just read through a bunch of your posts and find your overall outlook and your focus on Thailand fascinating. I will add you to my blogroll and visit regularly.
The "quality of life" issue is a slippery sloped one for patients with a wide range of diseases and one I have had to deal with. I have passed on experimantal drugs and proceedures and chosen a natural, holistic path. It seems to help and I feel better than I would if I had chosen otherwise. Of course I hope for a cure but each day is the day I have at that moment and want to feel the best I can for myself and for my family as they care for me.
Ashley cannot choose for herself and has to rely on her parent's love and wisdom. I am inclined to agree with their choice, my husband is on the fence. I think that her comfort should be a priority and I know that if they are able to lift and hold her in their arms, she will benefit from their touch and love. She is a baby, no matter what size, and as we all need the comfort of a loving connection, babies are helpless and need it most of all.
I'm inclined to think that the discomfort of the proceedures is small compared to a lifetime of other issues added to her condition. A difficult and controversial choice, yes, but under the circumstances I think a loving one.
That's a haunting image and suits your post. I'm so glad that in this lifetime I didn't have to make a choice like this. I would be against altering Ashley in any way. I've heard of women who have had radical masectomies to avoid breast cancer, and there's a mental disorder that drives people to cut off their own limbs. The future is going to be filled with ehtical choices about living, dyhing and what constitutes "quality" of life. I honor Ashley's parents choices, but don't condone them.
That's a haunting image and suits your post. I'm so glad that in this lifetime I didn't have to make a choice like this. I would be against altering Ashley in any way. I've heard of women who have had radical masectomies to avoid breast cancer, and there's a mental disorder that drives people to cut off their own limbs. The future is going to be filled with ehtical choices about living, dyhing and what constitutes "quality" of life. I honor Ashley's parents choices, but don't condone them.
hey, i see Mr. Atavist is in the house. Good show!
I, too, have to think about this one....but my first reaction is wow...what loving parents. and what difficult choices.
My cousin's son has multiple birth defects. He is almost 5 years old and totally dependant upon others for his care. As he grows in stature, it becomes increasingly difficult for my cousin to care for him. In addition, he is truly only happy when he is being held. I believe that if such a procedure was available to my cousin, she would choose to have it done. Not only would she be able to continue to care for him physically; she would be able to hold him and give him the comfort he so desperately needs.
I can't imagine having to make a decision of this magnitude. My oldest sisters first child was severely retarded but he grew to be very large and aggressive. They had to finally put him in a home because he would attack without provocation. He died at just 17 from pneumonia...but it was 17 years of Hell...for him as well as his parents.
Tough, tough choice and thanks for your ideas.
What a ghastly choice for anyone to have to make. I agree, with reservations, that keeping Ashley small enough to be tended is the most viable one, but how very sad that all of them are in this situation.
My reservations center mainly on a feeling that if such technology exists, before long people with more money than brains will find some way to adapt it to preserve their own youth, to never age physically. And we will have an epidemic of people in their 50's and 60's who look 15.
I know it's a stretch, but with enough determination and monetary incentive, it could happen.
I am living on Mars, so I have not heard the story ;). But in such cases no one can imagine the difficult times her parents have been going through. The only thing we can do is to support them in their hard-to-make-decision, IMHO.
I am unable to imagine what life these parents are living. I cannot criticize them. I can only trust that they had the best interest of their child at heart.
I'm with you on this one too. It seems there is a time when such issues need to be decided as an individual case - not lumped into some category.
Great post.
hi Chani, fell behind in my TG reading and just wanted to respond to the concern you expressed about the comment section in your blog. I visit regularly but don't always feel I can add anything intelligent so I refrain from commenting. Ashley's story is a case in point. As a mother, I can't even begin to imagine what this family's daily existence must be like. I thank you for bringing this story to us. Be well.
Chani - This really bugs me, and I think my answer is going to make me unpopular. I really feel for the parents, but I have to disagree with you on the slippery slope. What about children that suffer from spina bifida? Their brains are fully functional, but their bodies are not. Is this surgery now ok for them too? Because it will make them easier to lift?
I am bothered that so much of her normal physical and physiological functions were altered to keep her life "normal" as the parents state. Not her life - her parent's life. She is being kept small so that they will have an easier time lifting her, caring for her, not having to deal with her periods, etc.
She is still a human being. These were not life or death medical decisions that were made on her behalf. That being said, too bad we don't have better systems in place in this country to help parents of severely disabled children deal with these long-term care issues. Because if we did, these surgeries never would have happened.
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