Jack Zembsch (left) and Mallory Obenauf were among those patients who accompanied researchers and orthopaedic surgeons to Capitol Hill in February.

AAOS Now

Published 5/1/2013
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Erin Lynn Ransford

Young Orthopaedic Patients Find Their Voices on Capitol Hill

Research Capitol Hill Days provide advocacy opportunity

Orthopaedic surgeons, patients, and researchers from 21 states visited Capitol Hill in February to raise awareness of musculoskeletal diseases and disorders and to highlight the need for continued federal research funding. The annual AAOS Research Capitol Hill (RCH)Days advocacy event provided an opportunity for patients with a broad range of musculoskeletal conditions to share their stories with members of Congress and underscore the value of orthopaedic research.

The AAOS doctor/patient advocacy teams collectively urged Congress to appropriate $535.6 million in Fiscal Year (FY) 2014 for the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), maintaining the amount appropriated in the FY 2013 budget. In challenging economic times, it is imperative to preserve existing funding levels, particularly in the face of cuts mandated by the sequester rules.

Musculoskeletal diseases and disorders cost the U.S. economy approximately $850 billion annually and represent nearly 8 percent of the country’s gross domestic product. Despite the costly nature of musculoskeletal conditions, funding for orthopaedic research has grown slowly—barely keeping pace with inflation. The impact of the sequester cuts could have a long-term negative effect on critical research that ultimately could reduce the cost of care.

Life-threatening condition, lifesaving care
For the Zembsch family, recent advancements in surgical implants for spinal deformities helped save their young son’s life.

At 5 months old, Jack Zembsch was diagnosed with metatropic dysplasia (MD), a rare form of dwarfism characterized by severe spinal deformities, including kyphosis and scoliosis. As Jack grew, his vertebrae formed in a wedge shape, causing his spine to round forward. His spinal deformity rapidly compromised his chest cavity. The kyphosis progressed rapidly, reaching a 90° curve by the time Jack was 8 months old.

Jack wore a brace throughout early childhood, which kept the curves from progressing for several years. However, when he turned 6, his spine began to deteriorate again. A year later, in May 2009, the kyphotic curve had advanced to 110° and the scoliotic curve reached 70°.

At age 7, Jack underwent a surgical release of his spinal ligaments and was fitted with a skeletal halo. Jack was in the halo traction for 9 weeks, spending the entire time hospitalized at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del. In 2009, Jack’s halo traction was removed and a Vertical Expandable Prosthetic Titanium Rib, also known as a VEPTR, was surgically inserted. A VEPTR is a new surgical treatment for thoracic deformities in children with complex spinal deformities. Perpendicular expandable rods were inserted between the ribs and the spine, supporting the thorax and allowing for lung growth and normal breathing.

Beginning in March 2010, Jack had six additional “rod lengthening” surgeries at Nemours/DuPont to help him stand up straight for the first time.

Now 11 years old, Jack is thriving. He lives life to the fullest in his new body. His spinal deformity is hardly noticeable, and his mobility and stamina improved drastically. He is an avid swimmer and loves to snorkel. Jack is a national champion in dwarf bocce, football, and swimming.

“Seeing and speaking with someone who lives with these life-changing conditions gives meaning and inspiration to the message for research funding support,” the fourth-grader said of his trip to Capitol Hill with his parents. “I am an image you cannot forget. It’s good for victims of rare diseases to have cures. You can’t argue with that!”

The Zembsch family is encouraged by rapid developments in understanding MD as a result of research. “In the 11 years that we have been involved with MD issues, it is amazing how far research into the genetics of MD has come. During that same time, the halo traction and growing constructs surgical treatment have changed lives for these kids,” stated Mr. Zembsch.

Showing her backbone
Jack wasn’t the only young advocate who found his voice on Capitol Hill. Mallory Obenauf, an eighth grader from Davenport, Iowa, told senators and representatives about her journey with scoliosis.

Mallory was diagnosed in kindergarten with an abnormal spinal curvature, an indicator of scoliosis, during a routine school physical. Her family visited Stuart L. Weinstein, MD, a pediatric orthopaedic spine surgeon at the University of Iowa. At age 5, Mallory was fitted with a brace to halt the progression of her spinal curves. Even though Mallory continued to wear the brace, the scoliosis progressed.

When she was 8 years old, Mallory joined the local swim club. She continued to be involved with swimming during the years she was monitored for scoliosis. She never complained of back pain, but noticed difficulty breathing after a long-distance swim race.

By May 2011, at age 12, Mallory’s spinal curve had progressed to nearly 50°; 6 months later, the progression had advanced to an astonishing 65° and required surgical correction.

Her surgery was postponed until after she competed in the state champion swim meet in late February 2012. The day before Mallory’s surgery, her curvature was measured at 85°. The deformity was crushing her internal organs and compromising her health. “We were shocked that her curvature had progressed again since November,” her mother Donna recalled. “Her body was telling us that she needed this corrective surgery to help her have a healthy future.”

On March 29, 2012, Dr. Weinstein performed a posterior spinal fusion with instrumentation. Mallory’s surgery was a success, and she is already back in the pool.

Mallory’s surgical success story also had a profound impact on legislators during her Capitol Hill visit. She documented her scoliosis surgery journey in photographs and created a book that she shared with Congressional representatives, including Iowa’s senators, Tom Harkin and Charles Grassley.

“Telling my story helped them understand how important the research funding is for the future health of people like me,” Mallory said. “I was able to share my personal scoliosis story and show them pictures of before and after surgery X-rays, plus some pictures of activities that I’m able to do after surgery.

“This experience made a difference to the people on Capitol Hill because I was an actual person in front of them who told her story, instead of just being another letter on their desk to review,” she said.

Continuing to advocate
Mallory, Jack, and the 18 other orthopaedic patients shared their personal stories to help drive home the need for continued research funding of musculoskeletal conditions to Congress. Although the Hill visits are over, these eager advocates are not done sharing their stories and helping others.

Mallory, who is active in student leadership and in local volunteer organizations, uses her scoliosis story book to help other young patients needing spine surgery. She recently received the Prudential Spirit of Community Excellence Award and the President’s Volunteer Service Award for her efforts.

She gives Dr. Weinstein her business cards to distribute to his scoliosis patients. The cards include an invitation for patients to contact her with questions about her experience. “When I can, I like to visit patients of Dr. Weinstein’s who have recently gone through this surgery and show them that there is life after surgery,” she said.

Jack has always been interested in leadership and helping others. “After my trip to Capitol Hill, I learned this is an important interest to follow,” he said. “I will continue to work hard to represent people in need of a voice.”

For more information on Research Capitol Hill Days and AAOS research advocacy initiatives, please visit www.aaos.org/researchdays

Erin Lynn Ransford is manager, research development. She can be reached at ransford@aaos.org