Should severely disabled children be kept small?

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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.”

The authors of a commentary applaud Gunther and Diekema for publishing this case report, although they believe that attempts to attenuate growth are “ill advised.”

Nonetheless, Dr. Jeffrey P. Brosco from the University of Miami and Dr. Chris Feudtner from the University of Pennsylvania, Philadelphia, say that by beginning the debate, this paper helps to “advance our ethical dialogue as we struggle to define our core values in words, laws, and deeds. Only with further research and public discussion will we learn whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities.”

SOURCE: Archives of Pediatrics and Adolescent Medicine, October 2006.

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