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."

Seven years later, Chase was born - with two thumbs on one hand and one-and-a-half thumbs on the other - and the family didn't hesitate to return to Shriners Children's and consult with the same doctors. "Again, Dr. Manske and Dr. Goldfarb made us feel 100% confident he would be fine. They said they would do his surgery at 10 months."

Unfortunately, when they brought Chase in for surgery in 2011, they received bad news: Dr. Manske had lost his battle with cancer. "He was an incredible, caring man, and we were devastated," Tess said. "But we felt so blessed that Dr. Goldfarb would be doing Chase's surgery because he is the best of the best, just like Dr. Manske. How lucky are we to have our kids cared for by two of the best hand surgeons in the world?" Four surgeries later, Chase's hands now work wonderfully.

Olivia's Turn

Last but not least, when Olivia was born in 2011, she had the most complicated case yet, born with all fingers and no thumbs. "She had six digits on one hand and five on the other," Tess recalled. "I was not scared at all because I knew Dr. Goldfarb would take care of her." In fact, the doctor took her case to a hand conference in Vietnam, where he met with hand surgeons from around the world and discussed the best surgery strategy.

It was deemed best to wait until her hands were more developed, so, in 2015, Dr. Goldfarb did the first of seven surgeries to create thumbs on each hand (a procedure known as "pollicization"). "The results were incredible," Tess said. "She could actually grip things without having to 'scissor' them between her fingers. She has one surgery left this November, and then she should be done."

Establishing Trust

Building rapport between a doctor and a pediatric patient doesn't happen overnight, and each provider has their own way of developing that relationship, Dr. Goldfarb said. "I don't want to do anything that would be threatening or perceived as aggressive, so I try to start by perhaps speaking with the parent, depending on the age of the child. And then I focus my attention on the child." If the patient is old enough, he'll converse with them.

"Dr. Goldfarb would talk to me about things other than just my hands," Olivia said. "He would truly get to know me, and, anytime he would talk to me about my hands, he would use words that I could understand and not these big words that I had no clue what they meant, and it really made me appreciate him because I knew what was going on and it wasn't just some long procedure that I didn't even know what was going to happen."

Another approach that Dr. Goldfarb uses is not to focus on the specific condition straightaway. "If only one hand's affected, I might begin by examining gently the other hand," he said, "or doing something that would hopefully put them at ease before examining the part or the hand that is of concern."

Establishing trust and good communication with the family is equally important, and Dr. Goldfarb seeks to educate families and patients about their options before making any decisions. "It's a matter of establishing a treatment philosophy that makes sense to them," he said. "I see my job as a physician and as a surgeon to answer questions and present options. Rarely do I say that I strongly recommend this or that. Instead, I say you have two or three options, and, if they want to know what I believe, then I share it. But it's more of a matter of making them comfortable with my style as well as my expertise. Then, hopefully, all goes well with the first child and they trust me to take care of their second or third or however many children they may have in the future."

Dr. Goldfarb enjoys the opportunity to form long-term relationships with patients and families at Shriners Children's, he said, calling it "one of the reasons I do what I do."

One Happy Family

Tess strongly believes that working with the same doctor helped Chase and Olivia - not to mention her and Scott - feel more at ease when it was the younger siblings' turn for surgery. "There was no fear because we knew we had the best of the best in Dr. Goldfarb. He always made us feel comfortable that he would figure out the best option to give the kids maximum function and the best appearance possible. He performed miracles, and all three of our kids function perfectly in life."

She praised Dr. Goldfarb for his excellent communication, whether making in-person decisions about treatment or emailing after-hours with questions or concerns. "I'm so grateful to have a doctor who truly cares about his patients along with their families," she said. "He has helped us through so much, and I know he will always be there for us."

That continuity of care has meant the world for Tess and Scott. "It helps us know we are absolutely doing the right thing for our children by keeping them with the same doctor who has taken care of them from the beginning," she said. "With each of the children needing multiple procedures, it was vital that the surgeon performing them knew their case well to give them the best outcome in the end."

But how do the kids themselves feel about this process? "If I had to see a different doctor every time I went to an appointment, I would be more uncomfortable because I don't get to personally know my doctor or how his personality is or how they are as a person," Olivia said. "But, with going to the same doctor over the years, I've genuinely gotten to know Dr. Goldfarb and know that he is a kind person who is great with communication and someone I love going to every time I go to the doctor."