"It Occupied Her Entire Childhood": Looking Back on Limb-Lengthening.

Abstract

Approximately 1 in 1000 children are born with congenital lower limb deficiencies related to underlying congenital vascular insufficiency.1 Their parents face a difficult choice: early amputation and prosthesis-fitting or a series of painful, invasive lengthening procedures, which, despite some advances, still carry a risk of a poor functional outcome for a significant minority of patients.1–3 In this Family Partnerships essay, a young woman born with congenital short limb, her mother, her current orthopedic surgeon, and a pediatric ethicist reflect on their family’s choice and its consequences for her health and wellbeing over the past 30 years. Lindsay is the younger of our two daughters. I had been advised to stop taking antiepileptic medications during my pregnancy, but this led to my having more frequent and severe seizures. Sometimes I fell but remained conscious. Although 3 doctors have told us that Lindsay’s disability was unrelated, I still feel guilty that I might have caused it. Regardless of what got us into this position with our little girl, we were always going to do everything on heaven and earth for her. The day after Lindsay was born in 1987, the pediatrician came to my room with the longest face I have seen a doctor have before. … Address correspondence to Amy Caruso Brown, MD, MSc, MSCS, Center for Bioethics and Humanities, SUNY Upstate Medical University, 618 Irving Ave, Syracuse, NY 13210. E-mail: brownamy{at}upstate.edu