Parents stunt growth of profoundly disabled daughter
Amanda has an excellent post about Ashley, a profoundly brain-damaged girl from Seattle whose parents chose to stunt her growth so that they can continue to care for her at home.
Ashley's parents made their decision in conjunction with her doctors and a the 40 members of the hospital's bioethics committee. Not surprisingly, the move has has generated a great deal of controversy. At first glance, it seems absurd to stunt a patient's growth in order to facilitate home care. Why not give her parents more help? Isn't it obscene to remake a person's body for the convenience of her caregivers?
However, upon closer examination, it appears that Ashley's parents made the right decision in this very unusual case. The critical question is whether this treatment is for Ashley's benefit.
It's important to appreciate how severely disabled Ashley is when assessing the appropriateness of her treatment. Her brain literally stopped growing shortly after she was born. She can't stand, sit, speak, or shift her position in bed. She has the mental age of a 3-month-old. Her parents call her a "pillow angel" because she stays exactly where she's put until someone readjusts her. She will never get better. (Creepy phrase, I know, but it seems to be an accurate descriptor of Ashley's level of functioning.)
Ashley can feel pain, but she can't say where she hurts, or even point to the sore spot. She can also experience boredom, which is a chronic problem because she's confined to her bed for most of the day.
Ashley's parents have devoted their lives to giving their daughter the best possible life at home. They are determined to keep her close, as an integral part of the family. Ashley now weighs 65 pounds and her parents are already struggling to lift and carry her. Doctors had estimated that Ashley would eventually grow to 5'6" and weigh at least 125 lbs. Thanks to her treatment, Ashley is expected to be about a foot shorter and 50 lbs lighter, which makes all the difference in terms of her parents' ability to care for her at home.
If Ashley had gotten much larger, she probably would have had to be institutionalized. Furthermore, Ashley has a long life ahead of her, and her parents worry about what will happen when they get older.
To stop Ashley's growth, her doctors used high-dose estrogen to induce early puberty. Unfortunately, early puberty would also have saddled the 9-year-old with breasts and periods. In consultation with physicians and bioethicists, Ashley's parents decided to have their daughter's uterus and breast buds removed in order to spare her the discomfort menstrual cramps and large breasts, not to mention the risk of certain hormone-sensitive cancers that run in her family.
It's important to understand that the breast and uterus surgeries were done to prevent the side effects of the estrogen treatment, not as ends in themselves. There's room for debate about whether these secondary procedures were the best solutions to the side effects of estrogen therapy, but they seem defensible relative the alternatives.
The doctors didn't just remove the organs capriciously. Some critics accuse Ashley's caregivers of mutilating their daughter to assuage their own discomfort with the prospect of her sexual maturity.
In fact, Ashley's breasts and periods would have impaired her quality of life in various ways, without benefiting her at all.
Some critics might be more comfortable if Ashley's breasts had been left in their "natural" state, but Ashley herself would have suffered. She had a history of nipple pain before her hormone therapy, and her parents reported that her sore chest made her uncomfortable in her wheelchair. Larger breasts might have been a big impediment to a more normal life, as the wheelchair is Ashley's only way to experience the world beyond her bed, and she has already experienced considerable discomfort from the chest straps on her chair.
As anyone with breasts can attest, they sometimes get sore and need to be repositioned. For most women, that's a trivial matter. Stand up, roll over, stretch, change into a comfy sweatshirt--problem solved. Remember, though, that Ashley can't even roll over in bed. Imagine being stuck, lying on top of sore boobs, helpless to move or explain what's wrong.
Contrary to some sensationalized media reports, Ashley will not be consigned to a child's body. Her ovaries are intact. So, she will continue to have normal monthly cycles, just without menstrual cramps or bleeding. She will develop pubic hair, hips, and other secondary sex characteristics. The breast-bud surgery left her with normal nipples and intact chest tissue, save the two almond-sized clumps of milk duct tissue that doctors extracted through incisions in the skin. So, Ashley will be a 4'6" woman with a flat chest, instead of a 5'6" woman with big breasts.
Ashley's parents explain how staying shorter and lighter will preserve their daughter's quality of life on their blog:
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 well being. 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. In addition, the increase in Ashley’s movement results in better blood circulation, GI functioning (including digestion, passing gas), stretching, and motion of her joints.
Given the severity of Ashley’s disability, an average height contributes nothing to her quality of life. Ashley’s brain damage is so severe that her doting parents aren’t even sure she recognizes them, let alone anyone else. It's safe to assume that she will never feel awkward or embarrassed because she doesn’t meet some external ideal of adult height.
Being taller and heavier would only make Ashley's life worse. A larger Ashley would have been at greater risk of bedsores and more likely to be injured in the course of lifting and carrying. Obviously, height attenuation isn't the only way to manage bedsores, and full-sized adults can be carried safely. On the other hand, bedsores are a constant battle even for immobile patients who get the best care. For example, quadriplegic actor Christopher Reeve died of a bedsore-related infection. If you were a parent, wouldn't you at least consider a painless treatment that could improve your child's safety and comfort for life?
Ashley's treatment has been attacked as a kind of eugenics. In fact, Ashley's hysterectomy had nothing to do with eugenics. The pseudo-science of eugenics is about preventing people with "inferior" genes from reproducing in order to improve the health of future generations. In this case, everyone agrees that Ashley shouldn't be having sex or getting pregnant. Protecting defenseless people from rape and forced pregnancy has nothing to do with micromanaging the gene pool. This is almost beside the point, but Ashley's condition isn't even genetic! So, no eugenics here.
Some people argue that Ashley's treatment was just socially-sanctioned abuse of the disabled. However, these critics are uncritically appealing to ability-centered assumptions of what constitutes a "good" or "healthy" body. These assumptions hold for the vast majority of humans, and even for most people with profound developmental disabilities. But Ashley’s a tragic exception. The fact that her needs are very different from someone with severe Down's Syndrome or advanced Alzheimer’s disease is no reason deny her treatments that will improve and extend her life.