Ashley, a 9-year-old girl in Washington state, will never grow up. She has no breast buds or milk glands. She has no uterus. She will not grow taller than 4-1/2 feet. What is startling about her plight is that Ashley was made this way by doctors at Children’s Hospital in Seattle.
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Following a request from her parents, doctors there surgically removed her uterus and newly-forming breasts and began treating her with high doses of estrogen to ensure that Ashley would forever remain a child. Why would Ashley’s parents and doctors decide to have their daughter, like Peter Pan, never grow up? And why would doctors agree to use their surgical skills and drugs to stunt a child’s normal development?
Ashley’s doctors wrote an article answering those questions last fall . They noted that Ashley, whose last name has not been made public, is far from normal. She has a rare brain condition known as static encephalopathy. She cannot walk, talk, move or swallow food. It is not clear whether her damaged brain can recognize her parents or her siblings. The doctors said that Ashley’s parents came to them deeply concerned about how they would be able to manage their daughter as she grew older, bigger and heavier. The solution they seized upon, unprecedented in the history of medicine, was to use hormones and surgery to keep Ashley forever a child.
If she remains small then her parents can move her easily from place to place. By remaining small she can interact more with the rest of the family who can take her around the home and to outside events. She won’t have to deal with monthly periods. She may have a lower risk of getting raped and pregnant. She will not have breasts that might make it uncomfortable for her to lie in one place for long periods of time.
Now Ashley’s parents have spoken up as well. They explain their thinking in their recently posted blog. By keeping Ashley small, they can bathe her, move her about in a stroller and help her avoid developing bed sores. With no breasts she may be a less tempting target for any future male caregivers. And she obviously will not face the risk of breast cancer. The key point the parents make is that they decided to keep their child permanently as a child for her own good.
I understand the parents’ logic. And I can even understand how a medical team might come to agree that a person who cannot move will have a better life small than big. But I think the Peter Pan option is morally wrong.
I believe it is true that it is easier to move Ashley about if she is the size of a 6-year-old. But I also believe that a decent society should be able to provide appropriately sized wheelchairs and bathtubs and home-health assistance to families like this one. Keeping Ashley small is a pharmacological solution for a social failure — the fact that American society does not do what it should to help severely disabled children and their families.
True, it may be better if Ashley does not become sexually developed in terms of protecting her from attack. But that can be said of any woman. To surgically remove her breasts is simply to maim her in a way that ought not be done. She needs a safe environment at home and if the day comes, a safe environment in an institution. Lopping off her breasts to keep her safe cannot be the right or the only answer.
There are many parents and families who deal with severely disturbed children and adolescents. More than once a parent of a child with severe autism has told me they do not know if they can physically manage their child. Others worry about their children harming themselves or others due to their mental illnesses or disorders.
The problems Ashley and her parents face are terribly real. But permanently freezing a person into childhood is not the solution. Families like Ashley’s need more help, more resources, more breaks from the relentless pressure of providing care and some hope that their daughter can be somewhere safe and caring after they are gone.
America has not yet made that promise to Ashley or her parents or the many other parents and kids who face severely disabling mental illness and impairment. We should.
Arthur Caplan, Ph.D., is director of the Center for Bioethics at the University of Pennsylvania.
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