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Bright Futures

Articles and Updates from Phoenix Children's

November 01, 2021
A Lifetime of Care for Children with Spina Bifida
A Lifetime of Care for Children with Spina Bifida

At the Spina Bifida Clinic at Phoenix Children’s, we celebrate both the small victories and significant milestones of children living with spina bifida every day. Our patients and their families constantly amaze us. We take great pride in the way they navigate their daily lives caring for a child with a complex medical condition.  

What Is Spina Bifida? 

Spina bifida occurs when cells that would normally develop into the brain and spinal cord don’t close properly before birth. When this happens, the bones of the spinal cord don't wholly encase the spinal cord’s nerves as the spine is formed. Parts of the spine may stick out through an opening in the spine. 

The condition may cause: 

  • Hydrocephalus 
  • Paralysis or weakness in legs 
  • Inability to walk 
  • Bladder and bowel problems 
  • Orthopedic problems such as club foot or hip and knee issues 

Phoenix Children’s Spina Bifida Clinic 

Phoenix Children’s is one of 37 centers in the United States to earn the designation of Clinical Care Partner from the Spina Bifida Association. We care for patients and their families from before birth through young adulthood. We are experts in connecting our patients and families with resources to obtain the medications, therapies, and equipment they need to thrive. 

Our team includes physicians, nurse practitioners, nurses and care coordinators dedicated to providing the best care possible. Every member of our team understands the impact spina bifida and other spinal cord conditions can have on someone’s life and the lives of their friends and families. 

Our Services 

The Spina Bifida Clinic offers a full spectrum of services designed to improve the lives of children with spina bifida and their families. Experts provide care in a wide range of specialties, including: 

  • Child-life services 
  • Complex care pediatrics 
  • Nephrology 
  • Neurosurgery 
  • Nutrition 
  • Occupational therapy  
  • Orthopedic surgery 
  • Physical therapy 
  • Psychology 
  • Transition 
  • Urology 
  • Wound care 

We offer additional gastroenterology care in the new Peristeen and Navina program for bowel management. Our patients also have access to the Motion Analysis Laboratory for gait analysis. Within the larger Phoenix Children’s team, our Spina Bifida Clinic patients also have access to experts in: 

  • Adolescent gynecology 
  • Endocrinology 
  • Gastroenterology 
  • Genetics 
  • Neuropsychology 
  • Ophthalmology 
  • Plastic surgery 
  • Pulmonology 

Continuous Care: Before Birth to Adulthood 

For some of our patients, care starts before birth in our fetal care program. For others, their condition is not detected until after they’re born. The Spina Bifida Clinic offers prenatal consultations and support before and after delivery.  

We provide referrals for fetal surgery and other needed services if they are not available through the clinic. Our fetal team helps families understand all available care options so they can make informed decisions that bring the best results. 

The first visit for a child with spina bifida is typically in the first few months of life. From that point, visits continue annually. As children approach adolescence, they receive care in our Transition Clinic for patients ages 14-21 years old.  

Our clinic is also committed to caring for our patients beyond the transition period into young adulthood. We currently see existing patients until age 26. Our transition team includes a nurse and social worker who assist our patients in the eventual transition to adult healthcare. 

Care in the Community 

We are committed to caring for patients outside our hospital as well. Our clinic’s pediatrician serves as the co-medical director for Camp Patrick, a camp for children with spina bifida. Many of our clinic and hospital nurses and therapists spend a week at the camp as counselors, nurses and even a yoga instructor.   

This year, we partnered with the Spina Bifida Association of Arizona to present a webinar for families and support the Walk N Roll.  As the COVID-19 pandemic allows, we hope to participate in other community events such as play dates and support groups. 

A Lifetime of Care for Children with Spina Bifida

Making a Difference 

One of the most important goals of our clinic is social continence for bladder and bowel. Another goal is optimizing mobility. We schedule appointments with multiple specialists in one day to limit our patients’ trips and time devoted to healthcare needs. 

Feedback from our families is very positive. One parent noted: “The Phoenix Children’s Spina Bifida Clinic has made attending our yearly visits very easy. The team makes a great effort to connect to my child.” 

We are dedicated to helping our patients develop the skills and independence they need to take care of themselves and participate fully in the activities of daily living, including:  

  • Living independently  
  • Managing their own healthcare needs 
  • Understanding their medical history  
  • Using transportation 

Recently, a young adult patient was seen in the Phoenix Children’s halls walking with the aid of a gait trainer. He felt like we would not have this opportunity to work on his mobility if he were not being seen at the Phoenix Children’s Spina Bifida Clinic and cared for by our amazing team of physical and occupational therapists.  

Contact Us 

The Phoenix Children’s Spina Bifida Clinic meets from 8 a.m. to 1 p.m. most second and fourth Fridays every month. In addition, adolescents generally meet in our Transition Clinic on the fourth Friday of the month for assistance transitioning to an adult care system.  

For more information or to make an appointment, call 602-933-0044 to reach Bill Hissom, MA, our care coordinator.  

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