Ethical Debate About a Child’s Fate: Why your opinion means squat
When it comes to the lives of other humans, there is always a group of people ready to criticise the actions of the person or persons who made the decision, without having walked a mile in that person’s shoes. The people who oppose the actions of another are often those who will preach the mantra of “do as I say and not as I do.” These people tend to fall in the religious sector of humanity and never think beyond their little mentality of “it offends God” or that they know other disabled children who turned out fine. Not all those who are disabled are disabled in the same way. Some are only partially disabled physically and have strong mental capabilities. Or, they are people like Terri Schiavo who were once fully functional both physically and mentally but wound up in a persistent vegetative state, a condition, like that of the young girl, Ashley, which is incurable.
In this case, I am talking about the fate of a young girl, who was born without motor and cognitive capabilities beyond that of an infant of three months old. She can’t hold a toy and derives nothing but a simple pleasure out of life and cannot express her opinion or feelings beyond the basic level that is easily accessible to any infant of three months.
Mean-spirited people who have never walked a mile in the parents’ shoes are passing harsh judgement, decrying the decision to try and give the girl the most comfort she can receive out of life. Instead of trying to demonstrate understanding and compassion, these people are talking about how this girl will never experience life, and how she’s being denied her human rights.
But, according to the doctors over seeing the case of the little girl, she is beyond the reach of medical science. She can be kept comfortable, but her situation cannot be rectified with a simple pill that can repair the severely damaged neurological tissue in the brain.
Now, I shall bring those of you up to speed who haven’t the faintest notion as to why I’m writing this.
In America, in Seattle, there is a couple who have a beyond severely disabled daughter by the name of Ashley. She has the cognitive capacity of an infant, she cannot move as she lacks motor skills and her parents are concerned about her future when they won’t be around to care for her. She was diagnosed by doctors as having “static encephalopathy of unknown etiology”.
The “Ashley Treatment” – the blog her parents have set up to explain their situation to the world and offer support to other parents facing immensely difficult decisions about their own children with very similar disabilities that prevent the child from being able to live a full and healthy life.
The parents made the decision to medically inhibit puberty in their daughter by having her uterus removed via hysterectomy, the breast buds removed and growth attenuation through high-dose oestrogen therapy.
According to the blog set up by the parents, who have chosen to not disclose their names, despite being brave enough to speak publicly about their child’s plight, the main reason, contrary to the damning and scathing public opinions, was to minimise the discomfort that their daughter would experience from bedsores as a result of increased size and weight. Also reduced her discomfort by removing the uterus so she wouldn’t menstruate, and hence, be able to have children. Also taken into account was that there are potentially abusive caregivers in the world, and the girl might have been sexually assaulted at the hands of a caregiver and have a child of her own, whom she would not be able to care for.
Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.
Ashley’s parents said the decision to remove their daughter’s uterus and breast buds was for the girl’s comfort and safety.
“Ashley has no need for her uterus since she will not be bearing children,” they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it.
The operation also removed the possibility of pregnancy if Ashley were ever the victim of sexual abuse, they said.
The removal of the girl’s breast buds was also done in part to avoid sexual abuse, but was carried out primarily so she would not experience discomfort when lying down, the parents said.
The couple emphasised their love for their daughter and said the amount of criticism their choice of treatment attracted had surprised them.
This sounds to me like they would rather her daughter be comfortable, forever frozen, trapped in the body of a child. This doesn’t seem like the parents are seeking to make their lives more convenient. If they were, there are far less expensive options that the surgery and hormone therapy they are getting for their daughter.
The parents are genuinely concerned and made their decisions based on their daughter’s inability to communicate.
BBC: Have Your Say – How ethical is Ashley’s treatment?
Though, there are people on the internet who have expressed their lack of understanding and compassion through various mediums, including the BBC’s popular “Have your say” area.
People against the parents’ decision
I think it’s terrible. Just because someone is unable to communicate doesn’t mean they don’t have any rights as human beings. Look at Terri Schaivo. She was not cared for by her husband because it was inconvenient for him and his new, healthy bride-to-be. Ashley is being physically altered by her parents because it would be inconvenient if she grew. The handicapped are NOT inconvenient, nor are they disposable! I’m just sorry that our world is so sanitized that we’ve lost sight of the fact that life is messy and sometimes terribly inconvenient. I’m most sorry this poor sweet child couldn’t have her opinion heard in this situation.
Heather McIntyre, Cincinnati, Ohio USA
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This is a bizarre case, and it disgusts me.
Oalv, Oslo
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these people are sick
cutting out their daughter’s uterus and cutting off her breasts
who the hell do they think they are??[mango-], Cardiff, Wales
People who supported the parents’ decision
Why do people feel the need to slate the parents of this unfortunate young girl and undoubtedly add more pressure than is already upon them? Whether you agree with the treatment or not is completely irrelevant as you will not have to care for this girl. Has the only thing the internet provided is an anonymous hiding place for opinionated people to rant about things that they are not experienced or educated enough to comment on. Let people conduct their lives as they wish, put yourself in the shoes of the parents and the young girl and I think you will see that parents/family generally know best
Mark, Dresden, Germany
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As a parent of a severely disabled boy of nine years old, my heart goes out to Ashley’s parents. To the many critics I ask: when did you ever offer to aid someone with a kid like this or even offer to change one single nappy? Our ‘extended family’ dumped us. Governmental support was assumed – after all, don’t we live in a Welfare State, don’t we? – but unavailable. Our others kids are treated as pariahs. Saddest time each year is local Special (disabled) School ‘Awards Night’ where we meet parents of 65 severely retarded kiddies. In shocking contrast with their happy smiling kids, I see 65 pairs of lives destroyed. Dull, sleep-deprived eyes, zombie-like stares, shattered & futureless.
steve godfrey
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At least Ashley is blessed with parents who truly love her and have made a hard (but right decision is my view) to give her as best a quality of life that is medically possible. Her HUMAN RIGHTS are safe in thier hands.
Malcolm, London
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A person who is mentally a 3-month-old will not ever need breasts, ovaries, uterus, or adult size. Does keeping her small make her less human? Tell that to people with dwarfism. Does removing female parts make her less female? Tell that to cancer patients. What does a 3-month-old need? To be held, cleaned, fed, kept from harm, and paid attention to. This surgery will aid all her caregivers in giving her these things. Also, it is human nature to more tenderly care for children than adults. The parents gave their daughter a unique gift — permanent physical childhood — to help her get what she needs. If medicine advances enough to fix her brain, the other stuff will be easy to fix.
dmm, Washington, DC
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Before any of us has the right to comment on the parents decision, we should try living a day in their shoes. Looking after a disabled child is hard enough without having other critise your actions without knowning the full story.
Debby Cooper, Surrey
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Having worked with children and adults in a physical condition similar to Ashley’s, the decision her parents have made seems wise to me. Many parents want to be able to keep them at home, but as these kids grow, the parents’ desire is one thing and the reality of lifting and carrying an adult is another. The surgeries to which she was submitted are not drastic surgeries; they heal quickly. I see no mistreatment nor wrong motives here, but rather loving parents who are thinking of how to make a difficult future easier for the little girl and for her family as well. May God bless them and help them in this.
Susan Combs, Bogotá, Colombia
For the few callous comments I found, there were more thoughtful, supportive ones ones dotting the horizon. Comments from people who had an ounce of good old fashion common sense in their hearts, or from people who knew the parents’ pain.
So, what do I have to say about all of this? It’s the parents’ choice. They consulted doctors and specialists. They had to make a choice. They are the ones who care for this child, not the people who frown upon the actions that the parents have taken. And, so, I say, no one but the doctors and parents should have a decision in this.
Too bad conservatives are too willing to block stem cell research because of the moral and ethical dilemma that supposed surrounds using embryonic cells to learn more about how to reverse chronic illnesses that a hundred years ago we thought we could treat with a little bit of morphine and three days in bed. (Hybrid embryo work ‘under threat’)
Treatment keeps girl child-sized
Note: All the italic quotes are either taken from the BBC’s article, or from the blog set up by the parents.
If you wish to send an email to the parents offering them your support, or if you wish to share your own stories, so they know they are not alone in their struggle, you can reach them at: PillowAngel@hotmail.com
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