January 16, 2007
Ashley "X"By Miguel A. Guanipa
There is something unsettling about the taking of steps to manipulate the natural growth of any human being. Unless the person's growth represents a life threatening condition, it is hard to justify this type of treatment despite the executor's best intentions. But it is also hard not to have sympathy for people like Ashley's parents.
Ashley "X" is a severely disabled nine year old girl who suffers from static encephalopathy, a rare brain disease from which she is not expected to improve. She is completely immobile, can not speak and has to be fed through a tube. Because Ashley stays wherever her parents place her they call her their "Pillow Angel".
When Ashley showed early signs of puberty at six, her parents consulted a board of ethics at Seattle Children's Hospital for their approval to begin a high-dose estrogen treatment to stall her growth. This unprecedented type of growth attenuation treatment would keep Ashley at her present size of less than 5 feet and 75 pounds and make it easier for her parents to carry her around and care for her. A hysterectomy, appendix and breast bud removal procedures were also performed in order to avoid the potential infections and discomforts associated with a menstrual cycle and extra body mass for a person in Ashley's condition.
The natural aversion most people feel towards what was done to Ashley stems from the popularization of the "designer baby" trend - where parents select specific pre-natal genetic information to procure the offspring of their dreams - and fears that this practice may soon become the accepted norm for the future of childbearing.
In Ashley's case - one who is already outside of the womb - it is more a case of how the parents can engineer her development to better manage her care as a disabled adult. Thus they have unwittingly been thrust into a debate which could have long lasting repercussions for the way our society deals with those who have to face the unenviable task of caring for a severely disabled family member.
The perennial question asked by ethicists in such cases is: at which point do these highly invasive therapies become normative and only done for the convenience of one party and at the expense of another? According to the medical doctor who was working with Ashley's parents, the treatments were not significantly harmful and the benefits would outweigh any future negative side effects both for Ashley and her parents, who in his estimation were motivated only by love for their daughter.
Adding to the amalgam of thorny questions already inherent in what is at heart an ethical debate, Daniel Gunther - the pediatric endocrinologist who has overseen Ashley's treatment - remarked that the ensuing debate about Ashley's treatment reminded him of a quote from Isaac Asimov:
Quoting Isaac Asimov to defend the legitimacy of a decision to keep someone at her present body size for the rest of her life was probably not the most judicious course of action.
Isaac Asimov is a science fiction writer and an avowed supporter of an ethic based on a non-theistic worldview. The reference seeks to divorce morality from the realm of choice; hence giving everyone license to decide what is the right (moral) thing to do, merely on the basis of their own personal needs or desires, irrespective of whether or not they violate a universal moral law which contradicts their own personal criteria. Unfortunately this implication cast the motives of Ashley's parents in a less favorable light than they may have originally intended; but hiring some of the best doctors in the field doesn't guarantee that they will also be the best public relations consultants.
Poorly chosen rhetoric notwithstanding, Ashley's parents feel that theirs was intended to be a very private decision, made with purely altruistic motives.
They convincingly argue that they are essentially considering the value of the person dwelling inside of her listless body. They speak of Ashley's enjoyment of the outdoors and classical music, and present a compelling argument for how her life is enhanced by keeping her in a portable size. In the most literal sense they are not asking that the burden of caring for Ashley be removed, but simply that it be made lighter.
By appealing to her emotional needs in conjunction with the added conveniences -which can not be denied - they argue that they are giving Ashley more options to enjoy life and providing more opportunities to cherish the time they spend with her, in spite of the cruel limitations imposed by her disease. One thing that can be said in their defense is that at least they have not opted for the more popular choice of removing her feeding tube thereby fully abdicating their parental responsibility.
In response to critics who found the treatment to be ill-advised and potentially detrimental to the cause of those who care for severely disabled children Ashley's father wrote on his daughter's blog that
Critics may not agree that God in this case is perhaps one that approves of such treatments only in order to minimize the parent's inconvenience; others may see a God who would approve of them as a means to give Ashley more opportunities to enjoy treasured family moments.
I suspect that the God whose opinions are so often summoned up in these types of debates must have - by his very nature as creator - invested Ashley, like every other human being created in his image, with dignity and purpose, irrespective of what her physical limitations are due to her disease.
We must not presume - in spite of how difficult present conditions may be for caregivers of someone like Ashley - God's first order of business is to alleviate the suffering of the disabled. Hopefully God is more concerned with a much deeper kind of restoration; in which case the motives behind the decision by Ashley's parents may not be, after all, too far off the mark.
And as far as God's ultimate purposes are concerned, this is a province in which people on both sides of the fence should practice venturing into more prudently, lest they find themselves motivated by what is only their own personal prejudice.