Young disabled girl 'kept small'

The ethical dilemmas in caring for children with profound developmental disabilities in this brave new world are new and unparalleled.    I've never heard of such treatment, yet, it makes sense.

Young disabled girl 'kept small'.

In a report published in a medical journal this month, the doctors described a six-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.
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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," the doctors wrote.

The parents of the six-year-old, both of whom were university-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 six-year-old responded to her parents and two healthy siblings – vocalising and smiling in response to care and affection – and "clearly is an integral, and much loved, member of the family," the authors said.

After extensive evaluation, the combined opinion of a team of specialists was that the child would 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.