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Phoenix Children’s is Leading the Way With a New Osteogenesis Imperfecta (OI) Clinic

 

OI can be a painful, long-term, complex condition that affects not only the bones but also a patient’s heart, lungs, hearing, skin and eyesight.

Recognizing the need for expert multidisciplinary care for pediatric patients with OI, Phoenix Children’s has created a new OI Clinic. Our team is leading the way in offering medical, surgical and diagnostic breakthroughs for children and teens with OI.

The OI team includes:

  • Maegen Wallace, MD, Surgical Director of Phoenix Children’s OI Clinic, is a pediatric orthopedic surgeon who received specialized OI training at Nemours Children’s Hospital in Wilmington, Delaware and Children’s Nebraska in Omaha. She has performed more than 400 OI surgeries and is considered a leader in surgical OI interventions.
  • Pamela Smith, MD, Medical Director of Phoenix Children’s OI Clinic, is an endocrinologist who is formally trained in metabolic bone disorders, including OI. Dr. Smith was diagnosed with OI as a child and also has a child with OI. Dr. Smith has a unique understanding of the challenges, stress and clinical underpinnings of an OI diagnosis.
  • Rachel Lombardo, MD, is a medical geneticist who is skilled in finding the genetic source of OI in family carriers, which plays a critical role in complex and hard-to-diagnose cases.
  • Experts throughout Phoenix Children’s in pulmonary function, hearing loss, physical therapy, occupational therapy and pain management also provide care based on the patient’s needs.

The team’s goal is to focus on each patient’s quality of life by providing preventive care, appropriate surgical intervention and the identification of complications to ensure that treatment options are offered early, when they can be most effective.

Our Unique OI Clinic

During Phoenix Children’s two-day OI Clinic, patients receive testing and benefit from consultations with both the primary clinic team and other Phoenix Children’s specialists.

On the first day of the OI Clinic, our team performs DEXA scans, X-rays of the spine and upper and lower extremities, pulmonary function testing and eye exams.

On the second day, patients are evaluated for physical and occupational therapy and undergo hearing tests. Your patient’s care team will meet with the family to provide an evaluation and review the test results. Having the patient’s team of providers and the family all together as part of the consultation is instrumental in developing the appropriate care plan.

Phoenix Children’s OI Clinic is one of just 13 sites that are part of the Longitudinal Study of Osteogenesis Imperfecta conducted by the Brittle Bone Disorders Consortium. This research study is funded by the National Institutes of Health and seeks to improve the health and quality of life of people with OI.

Specialized Surgical Expertise 

Dr. Wallace became interested in OI after her medical fellowship training in pediatric orthopedic surgery. “Another surgeon encouraged me to explore this very complex condition, mentoring me as I learned more about managing and treating children with OI. Soon, I discovered that these kids are some of my favorite patients. Their families are truly amazing, and I really enjoy performing rodding surgery. It makes such a difference for these kids. In our field, it is unusual for an orthopedic surgeon to be involved in a child’s care for a lifetime, but I have come to really cherish these relationships.”

While her focus is on the whole patient, Dr. Wallace leads the team that assesses patients for surgical readiness and performs rodding procedures that support OI patients’ bones. This surgery involves the implantation of telescopic rods, most often into the femurs, tibias and humerus bones. Based on research, Dr. Wallace recommends inserting these rods in children as young as 14 months of age, or when the children start to pull up to stand.

“We generally start with the femurs because it’s not a matter of if they break but rather when they break,” explained Dr. Wallace. “We want to place the rods as early as possible to avoid a displaced femur fracture, which is very painful. Doing it in the controlled and safe environment of the operating room allows us to provide the patient with excellent care and good pain management.”

The telescopic structure of these rods makes it possible for them to last anywhere from two to seven years.

If you have a pediatric patient with frequent bone breaks, bowed limbs or other bone disorders, our care is second to none in the Southwest. Our team is well-versed in determining a multidisciplinary course of action that helps dramatically improve outcomes. This may include genetic testing for complex cases, surgical procedures to reinforce and realign bones and medical recommendations that can enhance bone density. After referring a patient to us, providers receive frequent patient updates.

We invite you to refer a patient to Phoenix Children’s or email us to learn more at

ortho-mdc@phoenixchildrens.com.