Georgia parents debate medically stunting growth of disabled children

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Georgia parents debate medically stunting growth of disabled children

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Contributed by Melisa Searcy
Melisa Searcy and her daughter, Angel, were at the state Capitol in February with state Rep. Allen Peake, R-Macon. They were supporting a push to allow growing medical marijuana in Georgia.

A therapy that uses estrogen to medically stunt the growth of children is making a comeback, and it's the parents of severely disabled children who are considering its use.

Physicians began using the estrogen therapy on children of both sexes with acromegaly, known also as "excessive-growth disorder," in the 1940s. The therapy was also used during the 1950s through the 1970s to reduce the height of healthy teenage girls; at the time, tall girls were deemed unattractive. When society changed its view of tall woman at the turn of the century, the practice stopped.

The New York Times reports that in 2006, Douglas Diekema, the director of education at the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital, and Daniel Gunther, a pediatric endocrinologist, had revived the treatment for severely disabled children expected to rely on caregivers the rest of their lives.

When the dependents started adolescence, the doctors reasoned that tasks of caring for them, such as toileting, bathing and carrying, could become very difficult for parents. If a child's growth could be stopped, it would benefit both child and parents.

"We propose," the physicians wrote in the Archives of Pediatrics and Adolescent Medicine, "that in situations in which parents request such an intervention, it is both medically feasible and ethically defensible."

Once Diekema and Seattle Children's Hospital ethics committee issued approval, Gunther administered estrogen estradiol to a 6-year-old profoundly disabled girl named Ashley. Her future predicted height was reduced by approximately 13 inches. The treatment, deemed "growth-attenuation therapy," also required monitoring calories to maintain Ashley's shorter and lighter physique.

Following Ashley's treatment, disability activists' claimed the therapy and its related procedures violated the child's rights to privacy and freedom from unwarranted bodily modification, which are stipulated in the Americans With Disabilities Act, the Rehabilitation Act, and the 14th Amendment.

According to the Times, the legal-advocacy group Disability Rights Washington launched an investigation and determined that Seattle Children's Hospital had broken state law by sterilizing a disabled minor without a court order. While no charges were brought against the hospital, it has stopped performing growth-attenuation therapy on children with developmental disabilities.

Since the controversy at Seattle Children's, it's difficult to know how many children have had growth-attenuation therapy. No registries for the practice exist.

Last year, the Pediatric Endocrine Society released a survey of its Archives of Diseases in Childhood members that showed at least 65 children have received the therapy, according to the Times.

Families of children with severe disabilities have learned about the treatment. Many congregate on Pillowangel.org, a private message board created by Ashley's parents, who've not made their names public, to learn more.

The AJC reached out to Georgia physicians and nonprofits serving the families of disabled children, but none would comment on the controversial therapy.

Ellijay resident Melisa Searcy's family has had experience with the estrogen therapy. Her father, born in 1946, was taken to the hospital at age 12 with severe growth pain. He grew 5 inches in one summer. His physician recommended the growth-attenuation therapy, which stopped his growth completely at age 14, at which time he was 6' 4" tall.

Searcy's daughter Angel Searcy, now 17, was born with microcephaly, a birth defect, and pachygyria, a developmental condition resulting in a smooth brain. She also suffers from epilepsy. Angel is small in stature and doesn't require the therapy, but Searcy said if her situation was different, she'd consider it.

"I have mixed feelings, but I'd totally understand if a parent wanted to stunt their child's growth, because lifting, carrying and maneuvering an adult-sized person on a daily basis would be difficult," Searcy said.

Searcy pointed out that parents of severely disabled children, and doctors, want the child to remain at home rather than be institutionalized. They have a better quality of life and longevity, she said.

"Morally, God made Angel the way she is, but if stunting her growth helped us keep her at home and care for her instead of placing her in an institution, I'd do it," she said.

Lisa Hyde, the Georgia mother of a daughter named Krista, 20, who has undiagnosed developmental delay with cerebral palsy, probably would not consider the therapy. She's concerned about the drug side effects, such as brittle bones.

"I can see both sides. If it would prolong the child's life and help elderly parents care for them, or if the Hoyer lift was not an option, then yes," Hyde said. She added that she wouldn't pass judgement on a parent who chose the therapy for these reasons.

The assumption that smaller people with intellectual and developmental disabilities get better care is not supported by empirical evidence, according to the Times. There are no studies correlating body size with quality of life.

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