.
The book, “Brave New World” by Aldous Huxley told a tale of the future when the state controlled the incubation and “decantation” [birth] of all embryos and they were cultivated in the laboratory to breed people for intelligence, future occupations and geographical climates.
Modern medicine, long shorn of its Hippocratic Oath to “do no harm” has been killing babies for a long time. Plastic surgeons will provide those with the funds to pay a perpetual youth of never growing old as told in Wilde’s “The Importance of Being Earnest” of 100 years ago.
“Ashley’s father” is now the pioneer in a new field for medicine where children deemed defective will be “lobotomized” all over their bodies to fulfill their parents expectations.
Serendipitously, a story from the U.K. Guardian, appended below, showed up on my monitor right after I sent the “mutilate” post. Here is the post again with the Guardian’s edited article on the father’s side of the story.
In the Light of the Law
A Canon Lawyer's Blog
Dr. Edward Peters
(a canon lawyer for the Archdiocese of Detroit, formerly of the Diocese of Duluth).
Friday, January 05, 2007
Ashley's Treatment was a Travesty
Stories of depravity anger me, but when depravity is portrayed as compassion, I go numb for a while.
It took me some time to grasp the reality that (in 2004, though the story is "breaking" only now) parents in Seattle directed a team of doctors to cut out the breast-buds of their nine-year-old, severally disabled daughter, remove her womb, and pump her full of growth-retarding hormones so that she stays little. You can read the parental rationales here. The genuine frustration these parents felt over the years is obvious; unfortunately, it only serves as the mortar that binds brick to brick in the wall of fallacious reasoning that Ashely's parents have erected to defend their decision.
Worse (if that's possible), the parents have published their "Ashley Treatment" story so that other parents of children facing long-term care needs might consider their solution. God have mercy on us all.
In my opinion, whatever their motives might have been, the inescapable fact is that Ashley's parents inflicted a host of serious mutilations on their innocent child. None of the procedures they ordered (hysterectomy, breast-bud removal, or anti-growth hormones) could qualify as "therapeutic" under Catholic moral or canonical analysis, for none were intended as treatment for damaged or diseased organs or processes. Because grave mutilation without therapeutic character is gravely immoral and canonically criminal (see Catechism of the Catholic Church 2297 and 1983 CIC 1397), the Ashley Travesty may not be used by those entrusted with responsibility for the care of God's most vulnerable children. U.K. Guardian
Ashley's story
When news broke that a disabled American girl had been given radical treatment to prevent her growing up, it caused a furore. Here, in an edited extract from his blog, her father explains why the family did itFriday January 5, 2007
The Guardian
Ashley in 2000. Her parents wish to remain anonymous. Photograph: PA
Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop. Over the years, neurologists, geneticists and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctors call her condition "static encephalopathy of unknown etiology", which means an insult to the brain of unknown origin or cause, and one that will not improve.
Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our "Pillow Angel" since she is so sweet and stays right where we place her - usually on a pillow.
Ashley is a beautiful girl whose body is developing normally with no external deformities. She is expected to live a full life and was expected to attain a normal height and weight. Ashley being in a stable condition is a blessing because many kids with similarly severe disabilities tend to deteriorate and do not survive beyond five years of age.
Ashley is alert and aware of her environment; she startles easily. She constantly moves her arms and kicks her legs. Sometimes she seems to be watching TV intently. She loves music and often gets in celebration mode of vocalising, kicking, and choreographing/conducting with her hands when she really likes a song. She rarely makes eye contact, even when it is clear that she is aware of a person's presence next to her. Ashley goes to school in a classroom for special-needs children, which provides her with daily bus trips, activities customised for her, and a high level of attention by her teachers and therapists.
Ashley brings a lot of love to our family and is a bonding factor in our relationship; we can't imagine life without her. She has a sweet demeanour and often smiles and expresses delight when we visit with her; we think she recognises us but can't be sure. She has a younger healthy sister and brother. We constantly feel the desire to visit her room (her favourite place with special lights and colourful displays) or have her with us, wanting to be in her aura of positive energy. We're often huddled around her holding her hand, thus sensing a powerful connection with her pure, innocent and angelic spirit. As often as we can we give her position changes and back rubs, sweet talk her, move her to social and engaging places, and manage her entertainment setting (music or TV). In return she inspires abundant love in our hearts, so effortlessly; she is such a blessing in our life!
The chance of Ashley having significant improvement, such as being able to change her position in bed, let alone walk, is non-existent. She has been at the same level of cognitive and mental developmental ability since about three months of age.
Faced with Ashley's medical reality, we worked with her doctors to do all we could to provide Ashley with the best possible quality of life. The result is the "Ashley Treatment".
In early 2004, when Ashley was six-and-a half-years old, we observed signs of early puberty. In a related conversation with Ashley's doctor, Ashley's mom came upon the idea of accelerating her already precocious puberty to minimise her adult height and weight.
We scheduled time with Dr Daniel F Gunther, associate professor of paediatrics in endocrinology at Seattle's Children's Hospital, and discussed our options. We learned that attenuating growth is feasible through high-dose oestrogen therapy. This treatment was performed on teenage girls in the 60s and 70s, when it wasn't desirable for girls to be tall, with no negative or long-term side effects.
The fact that there is experience with administering high-dose oestrogen to limit height in teenage girls gave us the peace of mind that it was safe - no surprise side effects. Furthermore, people found justification in applying this treatment for cosmetic reasons, while we were seeking a much more important purpose.
In addition to height and weight issues, we had concerns about Ashley's menstrual cycle and its associated cramps and discomfort. We also had concerns about Ashley's breasts developing and becoming a source of discomfort in her lying-down position and while strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues. The oestrogen treatment would hasten both the onset of the menstrual cycle and breast growth. Bleeding during the treatment would likely be very difficult to control.
It [became] obvious to us that we could significantly elevate Ashley's adult quality of life by pursuing the following three goals: limiting final height using high-dose oestrogen therapy; avoiding menstruation and cramps by removing the uterus; and limiting growth of the breasts by removing the early breast buds.
The only downside that we could think of was the surgery itself; however, the involved surgery is commonly done and is not complicated. Furthermore, we're fortunate to have access to one of the best surgical facilities and teams at Seattle Children's Hospital.
Since the Ashley Treatment was new and unusual, Dr Gunther scheduled us to present our case to the ethics committee at the hospital, which we did on May 5 2004. The committee includes about 40 individuals from different disciplines and is evenly composed of men and women. After we presented our case we waited outside while the committee deliberated the issue. The committee chairman conveyed the decision to us, which was to entrust us with doing the right thing for Ashley. There was one legal issue that we needed to investigate related to "sterilisation" of a disabled person. Upon consultation with a lawyer specialising in disability law, we found out that the law does not apply to Ashley's case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so. Furthermore, "sterilisation" is a side effect of the Ashley Treatment and not its intent. (Additional and incidental benefits include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused.)
The combined hysterectomy, breast bud removal, and appendectomy surgery was performed without complications in July 2004.
(The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk. If Ashley's appendix acts up, she would not be able to communicate the resulting pain. An inflamed appendix could rupture before we would know what was going on, causing significant complication.)
Ashley spent four days in the hospital under close supervision and, thanks to aggressive pain control, her discomfort appeared minimal. In less than one month, Ashley's incisions healed and she was back to normal; it's remarkable how kids heal so much quicker than adults.
After the surgery, we started Ashley on a high-dose oestrogen therapy using derma-patches that we change every three days.
Based on Dr Gunther's analysis, predictions, and estimates, this treatment is expected to reduce Ashley's [estimated final] height by 20% and weight by 40%. If we had started the treatment at a younger age, the benefits to Ashley would have been greater.
At this point Ashley is 4ft 5in, and has a bone age of 15 years, which implies that she is about 99% of her height. Therefore, the treatment is expected to produce a height reduction of 13 inches (or 20%). Average weight of a 4ft 5in woman is 75lbs, while the average weight of a 5ft 6in woman is around 125lbs, so the treatment is expected to produce a weight reduction of 50lbs (or 40%).
We are currently near the limits of our ability to lift Ashley at 65lbs. Therefore, an additional 50lbs would make all the difference in our capacity to move her. Furthermore, other than her mom and dad, Ashley's only additional care givers are her two grandmothers, who find her weight even more difficult to manage. We tried hard and found it impossible to find qualified, trustworthy and affordable care providers.
The main benefit of the height and weight reduction is that Ashley can be moved considerably more often, which is extremely beneficial to her health and wellbeing. Currently, one person can carry Ashley, versus requiring two people or a hoisting harness and ropes, should she have grown larger. As a result, Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc) instead of lying down in her bed staring at TV (or the ceiling) all day long.
Recently, a doctor suggested that Ashley will be less prone to infections as a result of her smaller size. Bedridden individuals are more susceptible to potentially fatal infections. Both the reduction in size in itself, and the increased movement and resulting blood circulation, are expected to reduce the occurrence and magnitude of infections including skin sores and pneumonia.
We are thankful to the support and prayers from many. At the same time we're surprised at the volume and magnitude of the critical comments. We carefully reviewed these comments: they seemed to us to be gut reactions without depth or rational consideration of the situation, the treatment, or the motivation behind it, which we hope this article sheds more light on. It seems that people are thinking of a child who is mostly normal or who might progress to approach normal.
To put our decision process in perspective, it is not uncommon for parents with children who have cancer or birth defects to pursue significantly more intrusive treatment (chemotherapy or radiation therapy) or more involved surgery (limb amputations or face reconstruction), than the Ashley Treatment entails.
We hope that by now it is clear that the treatment is about improving Ashley's quality of life and not about convenience to her caregivers. Ashley's biggest challenge is discomfort and boredom and the Ashley Treatment goes straight to the heart of this challenge. Even though Ashley's level of tolerance has increased along the years, she is helpless when bothered and her only recourse is to cry until someone comes to her rescue. These episodes are triggered by something as simple as sliding off the pillow or a hair landing on her face and tickling/bothering her, let alone menstrual cramps, adult-level bed sores, and discomfort caused by large breasts. Also, without the treatment, Ashley could not be moved as frequently or be as included in family life, and we would not experience the joy of being an intact family as often.
If people have concerns about Ashley's dignity, she will retain more dignity in a body that is healthier, more of a comfort to her and more suited to her state of development.
Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden. She brings a lot of love to our hearts, as we're sure all "Pillow Angels" bring their families. If there is a prize for those who have the record of how often they are told, "I love you," we're certain that these kids would win it effortlessly. Ashley's presence in our home kindles abundant feelings of love in all members of the family. It is a joy just being with her, she brings nourishment to our souls; it is a pleasure to visit with her and sweet talk her and observe her innocent and genuine smile.
Furthermore, we did not pursue this treatment with the intention of prolonging Ashley's care at home [people have assumed the family did it in order to prevent their daughter from going into an institution]. We would never turn the care of Ashley over to strangers, even if she had grown tall and heavy. In the extreme, even an Ashley at 300lbs would still be at home and we would figure out a way to take care of her. Ashley sets the barometer in our home, when she is happy we're happy and when she is not we're not.
The objection that this treatment interferes with nature is one of the most ridiculous objections of all; medicine is all about interfering with nature. Why not let cancer spread and nature takes its course. Why give antibiotics for infections? Even an act as basic as cutting hair or trimming nails is interfering with nature.
Some question how God might view this treatment. The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal (including the brains that He endowed them with) to maximise her quality of life. Knowingly allowing avoidable suffering for a helpless and disabled child can't be a good thing in the eyes of God. Furthermore, the God we know wants us to actively share our experience and learning with the rest of the world to help all Pillow Angels and other special-needs children in reaping the benefits of the Ashley Treatment.
We want to avoid sensationalism or philosophical debates about what we did and why we did it. We'd rather care for and enjoy Ashley than get into endless debates. In our opinion, only parents with special-needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers.
· http://ashleytreatment.spaces.live.com/blog/
