Continuity of Care at Shriners Children’s: Three Siblings, One Doctor and 20 Years of Treatment

Watching the three teens in action, you’d never guess they were born with a rare hand condition affecting their fingers and thumbs. The youngest, Olivia, holds her own on the volleyball and basketball courts; the middle child, Chase, bowls a 208 average; and the eldest, Max, runs a flourishing music production studio. And the whole family will tell you that they owe it all to Shriners Children’s St. Louis, where they first turned after Max was born with three thumbs on one hand and two on the other.

That was in 2003. Over the years, all three children have been operated on by hand surgeon Charles Goldfarb, M.D. (the oldest was also tended to by the late Paul Manske, M.D), for a total of 17 surgeries. (Olivia will undergo the siblings’ 18th – and last – surgery in November.) This nearly 20-year relationship isn’t unusual at Shriners Children’s, where pediatric patients often need long-term care. This continuity of care, which, unfortunately, has been on the decline in recent years, per a JAMA Network article, benefits the patient, family and provider in myriad ways throughout the treatment process, including building trust, lessening anxiety, promoting educated decision-making and building an in-depth medical history of each patient over time.

“I strongly believe that continuity of care, whether we're talking about the treatment of children with rare birth differences in the upper extremity or we're talking about adults with a primary care physician – that continuity matters a lot,” Dr. Goldfarb, Executive Vice Chair and Richard H. Gelberman Distinguished Professor of Orthopaedic Surgery at Washington University School of Medicine, said. “It's based on a comfort level. It's based on shared perspectives. It's based on an understanding, and the familiarity just breeds comfort.”

Three of Three

The family of Missouri resident Tess carries a rare genetic disorder that affects the development of the hands, primarily the thumbs, causing extra bones, extra digits and limited muscle growth. “The condition can be categorized as on the spectrum of radial polydactyly with triphalangeal thumb,” she said. “There is a 50/50 chance of inheriting the condition, and only three of my mom’s eight children inherited the gene: myself, one sister and one brother.” Her husband, Scott, does not have the condition.

Immediately after Max was born, the plastic surgeon at her local hospital examined the baby. “He said we would have to find ourselves a good hand surgeon and that they probably wouldn’t do anything to help him until he was at least a year old – and then left the room,” Tess recalled. “We were devastated and scared.”

Luckily, one of her coworkers, who was a Shriner, recommended that the family try Shriners Children’s St. Louis. At Max’s first appointment, when he was 3 months old, Scott and Tess were nervous, but meeting Dr. Manske and Dr. Goldfarb instantly put them at ease. “Dr. Manske immediately expressed that he was confident they both could fix his little hands with good function,” Tess recalled. “I appreciated the fact that Dr. Manske said that appearance was right in line behind functionality. After four surgeries, his hands turned out great, and he hasn’t had any issues.”