MSNBC.com
Should severely disabled kids be kept small?
6-year-old given hormones to stunt growth so parents can care for her
Reuters
Updated: 3:23 p.m. AKT Nov 1, 2006
NEW YORK - 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."
Copyright 2006 Reuters Limited. All rights reserved. Republication or
redistribution of Reuters content is expressly prohibited without the prior
written consent of Reuters.(c) Reuters 2006. All rights reserved.
Republication or redistribution of Reuters content, including by caching,
framing or similar means, is expressly prohibited without the prior written
consent of Reuters. Reuters and the Reuters sphere logo are registered
trademarks and trademarks of the Reuters group of companies around the
world.
URL: http://msnbc.msn.com/id/15517226/from/ET/
<http://msnbc.msn.com/id/15517226/from/ET/>
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