Every year or so for the past 15 years Philip Zeitler has been visited by parents raising a severely disabled child who have a simple but controversial request. They would like to stop their son or daughter growing much larger.
Typically the child’s brain development has been arrested at the level of an infant and they are physically incapacitated. The parents want their child to remain small enough to be lifted out of bed, carried to the lavatory or washed.
Dr Zeitler, chairman of the Department of Endocrinology at Children’s Hospital Colorado in Aurora, was one of a number of paediatric endocrinologists who quietly decided to offer “growth attenuation therapy”.
Doses of oestrogen, administered ideally when the child is aged between three and six can arrest growth. Similar treatment was offered in the 1950s to girls who were projected to grow very tall in an era when this was thought unattractive. Now it offers a means for parents to care for severely disabled children at home into adulthood.
Dr Zeitler said that families often came from other states. “We have had patients from New Zealand.” He knows of other doctors, in Wisconsin, Kansas City and San Antonio, but it is not clear how many children have been treated, partly because it is so controversial.
When two doctors in Seattle announced that they were offering the treatment to “nonambulatory children with severe, combined neurologic and cognitive impairment” there was an outcry. The patient, Ashley X, who could not walk or sit up unassisted and had the brain capacities of an infant, was also given surgery to ensure that she did not develop breasts and underwent a hysterectomy to spare her the pain of menstruation. Disability rights groups declared that her rights had been infringed and Seattle Children’s Hospital admitted that it ought to have obtained a court order before allowing the child to be sterilised.
The following year Dr Daniel Gunther, one of the two physicians who made the announcement in a medical journal and had been targeted for protests by disability advocates, committed suicide. Though his family said that he had been suffering from depression and that his death was not related to the outcry, the effect appears to have been to discourage families and doctors from openly discussing the treatment.
Last year a survey of paediatric endocrinologists suggested that 65 children had undergone the treatment. However, only 26 per cent of doctors contacted responded to the survey. David Allen, who heads the endocrinology and diabetes department at University of Wisconsin American Family Children’s Hospital, said that he felt that the treatment was almost underground, even though most paediatric endocrinologists thought that it was reasonable for parents to consider it.
He said that the therapy cost about $US20 a month. He would like a register of children undergoing treatment that would allow doctors to keep track of their development even if the patients remained anonymous.
Dr Zeitler agrees. “It would be nice for us to be out in the open so people can actually share their outcomes and we can see if we are actually helping these kids or not,” he said. “On the other hand, it’s controversial enough that if it’s open, there is a risk that it would create such a furore that it would get in the way of families getting help. In the end we are doing nothing more than making them shorter.”
He received an email this week from the mother of one of his first patients. He has the brain function of a five-month-old baby. “He’s doing fabulous. Ended up not quite 5ft tall, and he’s happy.”