Attenuating Growth in Children With Profound Developmental Disability

Abstract

Caring for children with profound developmental disabilities can be difficult and demanding. For nonambulatory children with severe, combined neurologic and cognitive impairment, all the necessities of life must be provided by caregivers, usually parents, and these tasks become more difficult as the child grows to adolescence and adulthood. Many parents would like to continue caring for their child with special needs at home but find it difficult to do so as the child increases in size. If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate the option of continued care in the home. Treatment of the child with high-dose estrogen, initiated at an early age, could provide this option. High-dose estrogen both inhibits growth and rapidly advances maturation of the epiphyseal growth plates, bringing about permanent attenuation in size after a relatively short period of treatment. We present a case report and discuss the medical and ethical considerations of such an intervention strategy. We suggest that after proper screening and informed consent, growth-attenuation therapy should be a therapeutic option available to these children should their parents request it.

Legal Restrictions on Decision Making for Children with Life-Threatening Illnesses—CAPTA and the Ashley Treatment

“…She was eventually diagnosed with "static encephalopathy with marked global developmental deficits" [7]. Ashley could not sit up, walk, or use language.…”

“…When Ashley was 6 years old and exhibiting early pubertal development, her parents consented to several medical interventions intended to increase her comfort and improve her quality of life: growth attenuation through high-dose estrogen, hysterectomy, and surgical removal of the breast buds [7,8].…”

Recent Developments

“…A media storm erupted in early 2007 after a case report was published in the Archives of Pediatrics and Adolescent Medicine America about the administration of hormonal and surgical treatment to a disabled child to keep her small [1]. Ashley was a 6 year old girl with static encephalopathy.…”

Introduction: Childhood and Disability

“…Similarly divisive was the 2007 case of Ashley X, a severely developmentally disabled girl whose parents requested growth attenuation therapy with the goal of caring more effectively for her at home. The ''Ashley Treatment'', as it was dubbed, is still hotly debated even a decade later with some arguing that it was an appropriate option considering the benefit offered by being cared for at home by her family and others arguing that it was an egregious violation of her dignity and rights (Gunther and Diekema 2006;Brosco and Feudtner 2006;Wilfond et al 2010).…”