Should Severely Disabled Kids be Kept Small?

An article from MSNBC reports:
In a report published in a medical journal this month, two doctors describe a 6-year-old girl with profound, irreversible developmental disability who was given high doses of estrogen to permanently halt her growth so that her parents could continue to care for her at home.

The controversial growth-attenuation treatment, which included hysterectomy, was requested by the child's parents and initiated after careful consultation and review by an ethics committee.

In their report in the Archives of Pediatrics and Adolescent Medicine, Drs. Daniel F. Gunther and Douglas S. Diekema, both at the University of Washington in Seattle, explain the reasoning behind what they hope will generate a healthy debate. Gunther is at the Division of Pediatric Endocrinology, and Diekema is at the Center for Pediatric Bioethics.

Caring for children with profound developmental disabilities can be difficult and demanding, they note. For children with severe combined neurologic and cognitive impairment who are unable to move without assistance, all the necessities of life - dressing, bathing, transporting - must be provided by caregivers, usually parents, and these tasks become increasing difficult, if not impossible, as the child increases in size.

"Achieving permanent growth attenuation while the child is still young and of manageable size would remove one of the major obstacles to family care and might extend the time that parents with the ability, resources, and inclination to care for their child at home might be able to do so," Gunther and Diekema write.

The parents of the 6-year-old, both of whom were college-educated professionals, indicated a strong desire to continue caring for their daughter. Despite having the neurologic development no greater than that of an infant, the 6-year-old responds to her parents and two healthy siblings - vocalizing and smiling in response to care and affection - and "clearly is an integral, and much loved, member of the family," the authors note.

After extensive evaluation, the combined opinion of a team of specialists is that the child will have no significant neurologic or cognitive improvements.

The onset of puberty and continued growth caused concern in the parents about how they would care for their daughter long-term, which they clearly wanted to do. They were concerned about having to turn over care to "strangers" and also about the complications that would arise when the child started menstruating.

The child is now a little more than a year into growth-attenuating therapy and approaching the end of her growth, Gunther and Diekema report. "As of yet, there have been no treatment complications."

The authors feel that growth arresting therapy can be "both ethical and feasible and should be an option available to parents..."

I understand the point of the treatment, and I am not going to criticize the parents who have, in good faith, sought medical advice and intervention in an extremely difficult situation. The doctors involved offer a reasoned argument for their procedure. The problem, I suspect, isn’t in their argument but in their assumptions.

The unstated assumption that seems to be operating here is that the child is somehow less fully human than the rest of us. I don’t think the parents in this case believe that - otherwise, they wouldn’t be so concerned about caring for her – but society believes that. Look at the description of the treatment’s purpose: “to extend the time that parents with the ability, resources, and inclination can care for their child. The clear and unambiguous implication is that, should they not have the inclination to provide care, they don’t have any moral requirement to do so. And that’s where the argument breaks down – at the very beginning and not at the end.

If this girl (at least the reporter refers to her as a child, and not as an object) is as fully human as the rest of us, then I don’t think we have any moral justification for prohibiting her growth to her normal stature. Were she deficient in growth hormones, there might be no obligation in this case to supply them as we would to, say, a young girl with a pituitary deficiency. Were she seriously overproducing them, there would be justification in intervening to lower them to normal levels to prevent the disease conditions resulting from gigantism. But to give her high doses of estrogen and remove her reproductive organs solely for the purpose of retarding growth strikes me as a violation. It is hard to see a moral difference between that and say, binding women’s feet to make them “beautiful.” Both involve the manipulation of another human being for the sake of personal convenience.

Which leads to the second false assumption behind this argument – the unquestioned belief that the only two options for caring for this young girl are for the parents to care for her at home or for her to be institutionalized. A Christian worldview offers the third way – the Church cares for the child with her parents in her home. That is the solution anchored on John 15:12, “This is my commandment, that you love one another as I have loved you.” The fact that it fails to cross anyone’s mind is indictment of neither the anguished parents nor the ethically conflicted medical community. It is an indictment of us.