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news News Thursday, December 13, 2018 Thursday, December 13, 2018 11:12 AM - Thursday, December 13, 2018 11:12 AM

Bennett's family chooses the Philadelphia Shriners Hospital for arthrogryposis care

Specialized treatment and team approach are key factors

Bennett's family chooses the Philadelphia Shriners Hospital for arthrogryposis care

Laurel and her husband Ryan adopted Bennett from China in February of 2018, when he was 19 months old. At birth, Bennett was diagnosed with a mild form of arthrogryposis multiplex congenita (AMC). His shoulders, elbows and right foot were contracted in ways that limited their function.

Seeking care in their native Washington, D.C., Laurel was disappointed with the local care options provided to Bennett.

“Because Bennett is mild on the arthrogryposis spectrum, doctors were treating it so lightly,” said Laurel. “They wanted to jump right into surgery. And orthotists would have just had him wear a night brace. We just felt like we were getting bad advice.”

From AMC support groups on Instagram, Laurel knew how important it was to find a doctor who really understands her son’s condition. Through a connection with another adoptive family of a child with AMC, Laurel discovered that Shriners Hospitals for Children — Philadelphia is a destination for arthrogryposis care.

Laurel initially had a consultation with Harold van Bosse, M.D., via email and was impressed by his thoroughness and thoughtfulness regarding Bennett’s case.

When they arrived in May to meet with Dan Zlotolow, M.D., to discuss Bennett’s arms, Bennett and his family were also introduced to Sarah Nossov, M.D. “It was the end of the day and we had an appointment with Dr. Z to look at Bennett’s arms,” said Laurel. “We mentioned that we were hoping to get his foot looked at too. So Dr. Z called over Dr. Nossov, and she was on her way out of the building. She was wearing her street clothes. But she met with us anyway and took a look at Bennett’s foot and she casted him that very same day.”

"What was handled differently [from care providers at home] is that Dr. van Bosse and Dr. Nossov both saw the importance of a pre-surgery cast to prep his foot and have it in the right position for his surgery,” said Laurel. “This is what the orthopaedists in our area failed to see. With AMC kiddos, the order of procedure seems to be so important in preventing relapse, which is a common occurrence, and the team at Shriners Philly just gets the importance of this and is so knowledgeable about AMC.”

“I just think that really shows the level of care here,” said Laurel. “It’s amazing! We weren’t even on Dr. Nossov’s schedule and she took so much time with us.”

Stopping in for a check-up after surgery on his foot, Laurel came equipped with questions for Bennett’s care team. Now Bennett wears an ankle foot orthotic (AFO) to prevent relapse from his surgery, but with such great progress, Dr. Nossov has allowed Bennett a break from his AFO for a few hours a day.

While Bennett’s wrists and fingers are very functional, his mom and his care team are hoping that his shoulders and elbows will see an increase in flexibility and function with therapy. During occupational therapy at home with a local provider, Bennett works on daily life skills and learns adaptive techniques to work around his joint contractures.

While Bennett is on Dr. van Bosse’s wait list, Laurel is so happy with Dr. Nossov’s care, she hopes to continue Bennett’s care with her. “We just love Dr. Nossov. She’s so personable. She has great bedside manner and really breaks things down in ways that we’re able to understand,” she said.

Relying on the team approach to our care can ensure Laurel that Bennett will benefit from the expertise of all of our top-notch doctors.

Bennett, his mom and a staff member