JBJS Editor-in-Chief Dr. Marc Swiontkowski brought to OrthoBuzz’s attention a recent “Family Partnerships” essay published in Pediatrics. The 4 “speakers” in the essay chronicle the suffering and pain of Lindsay Ellingworth, who was born with a congenital lower-limb deficiency. Lindsay’s young parents opted for limb lengthening over amputation plus a prosthesis after several orthopaedic consultations and an agonizing, confusing decision-making process.
Orthopaedic surgeon Dr. David Hootnick entered the picture about 10 years ago, when he first saw Lindsay, who was by then a young nursing student with ongoing problems associated with the index procedure—including scoliosis and chronic neck and back pain. The extent of the original deformity (30% femur shortening at birth) made Lindsay a “nonideal candidate for lengthening,” says Dr. Hootnick, but he adds that “Lindsay had a normal-appearing foot, making it all the more understandable that her parents balked at removing an apparently healthy part of their beloved child.”
Lindsay describes her limb-lengthening and years of treatments for complications as “a living nightmare.” Now an adult, she has concluded that “the doctors put a pretty bow on limb lengthening.” Pediatrician and bioethicist Dr. Amy Caruso Brown acknowledges in the essay the untenable bind Lindsay’s parents found themselves in when having to make a decision before their child was old enough to express preferences. “It is difficult to accept that a procedure that sounds as drastic and anachronistic as amputation might have fewer complications than the seemingly more sophisticated alternative,” Dr. Brown said.
According to Lindsay’s mother Rene Mauchin, “Although she has endured so much, Lindsay still laughs and celebrates life.” When asked for a takeaway that might help other families in similar situations, Ms. Mauchin said, “You have a right to know everything the doctors know…Don’t hesitate to see several doctors, and ask for evidence to back up their recommendations.”