There's so Much More Than What Meets the Law: The Case of Ashley

by Dr. Nileema Conlon Vaswani in

Controversy is raging across the Atlantic over the case of a little girl whose parents do not want her to grow. They believe that keeping her small is in her best interests and to achieve this, she was given growth stunting hormones in 2004 when she was only six years old. In addition, her breast tissue and uterus were removed, also, allegedly in her best interests.

So why has this case come to light three years later? An investigation has revealed this week that the surgery performed on Ashley was carried out without the approval of the American courts. This illegality has caused problems for the parents and the hospital that performed the surgery.

Of course the surgery ought not to have been carried out without legal backing. However, the pressing question is, regardless of the courts, whether it is morally permissible to give a six year old, developmentally disabled child, growth stunting hormones and to perform surgery on her the kind of which was performed on Ashley? If such medical "moves" are morally permissible, then one must ask how far we can go when it comes to "altering" people with disabilities even if it is supposedly for their own sake?

Ashley is severely developmentally disabled and has the capacity, both mental and physical, of a three-month old. She is confined to a wheelchair. In addition to these problems, Ashley’s family has a history of breast cancer.

Ashley’s parents have argued that the reason for giving her growth stunting hormones is so that they can continue to look after her even when she is an adult. They will be able to continue to carry and cuddle her. The reason for removing her uterus is based on the trauma associated with menstruation, especially as Ashley will not understand what is happening to her. The removal of breast tissue is to prevent breast cancer, a risk that her parents feel is real given the family history of the disease.

It is clear that Ashley’s parents are well meaning and believe that they are acting in her best interests. Whether these interests have been expressed and implemented appropriately is less clear. Let us consider their medical decisions one at a time.

The decision to remove Ashley’s uterus to prevent her going through the trauma of menstruation is perhaps understandable. If Ashley is severely developmentally disabled, then the possibility of having children would seem to be ruled out. In that case, to have preserved her uterus, particularly as she would have suffered as a result of menstruating, seems unnecessary. In the absence of the medical details of the case, it might be inappropriate for me to comment on this but one wonders why less invasive methods were not used. Medical intervention of the non-surgical variety, i.e., certain drugs, can halt or prevent menstruation. For Ashley’s uterus to be removed one hopes that other, less invasive, methods were ruled out for good reasons.

Also, one cannot help but wonder how much trauma Ashley might have suffered by undergoing the surgery. Those of us who understand a surgery we are about to undergo usually find the event traumatic enough. For someone who is unable to understand what is happening to her, having her uterus removed must have been less than a pleasant experience.

The removal of her uterus is the least morally problematic part of her case. The removal of breast tissue is hard to justify on the grounds that she may develop breast cancer. Many able-bodied children come from families that have a history of breast cancer. Yet, if the parents of these children tried to remove the breast tissue of their children, they would, most likely, be accused of abuse. If able-bodied children are protected, it seems wrong that a child who is disabled should be offered less protection.

Ironically, if Ashley does develop cancer, she won’t know or understand the disease in the way that a child or person who was not developmentally disabled would. Her mental trauma would, therefore, be less or even be non-existent. Notwithstanding the physical impact of the disease, the mental impact would not be the same as her experience of menstruating.

While no ones underestimates the impact of cancer, to argue that what Ashley’s parents did was morally justifiable would lead us to conclude that if any parents did the same to their child who faced the same risk, their actions would be morally justifiable. Clearly, this is not so. And if removing breast tissue to prevent cancer were acceptable practice, in the interests of "protecting" one’s child, various other actions would also have to be made permissible. These could range from shaving a child’s head so that he or she never has lice to never allowing children (or even adult children) from leaving the house on their own in case they meet with an accident. The list of risks that any child faces during the course of his or her life is endless. To take steps to restrict one risk leads one to ask what makes the other risks different and immune from parental interference?

The decision to use growth stunting hormones on Ashley also raises moral concern. One can appreciate the parental love behind the wish to be able to care for her even when she is an adult. However, it is possible to receive help to cope with a child who has a disability. It is not clear why instead of seeking help to cope with Ashley when she grows older, they are taking such radical steps to ensure that they can continue caring for her. Ashley should not have to change based on their ability to look after her. The degree of help they require ought to be adjusted to serve this purpose.

Although this case has become newsworthy this week because of the lack of legal procedure surrounding it, the real problems with this case are moral rather than legal. Ashley’s parents love her. However, for them to quite literally alter their child to suit their environment rather than their environment to suit the child requires a far stronger moral justification than they have provided at present.