Attenuating growth in children with profound developmental disability: a new approach to an old dilemma

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.