Patient and Family Advisory Councils

Children with spina bifida need personalized care starting before birth and lasting through young adulthood. At Phoenix Children’s, our interdisciplinary team – including neurosurgeons, urologists, orthopedic specialists and pediatricians – cares for children and their families throughout their journey with this condition.

Our Spina Bifida Clinic is one of just a handful of centers in the United States that has earned the Clinic Care Partner designation from the Spina Bifida Association. This designation means we meet the best practices to care for children with spina bifida. Additionally, our team of experts connects our patients and families with resources to get the medicines, therapies and equipment they need to thrive.

The Spina Bifida Patient/Parent Workgroup gives patients and family members a voice in helping us improve the care and services we provide. This effort allows patients to help themselves as well as others.

Spina Bifida Patient/Parent Workgroup members meet throughout the year to:

  • Respond to specific requests – such as projects, tasks and activities – that will improve spina bifida care
  • Foster a collaborative spirit between patients, their families and our team
  • Improve provider-family communication in our clinic
  • Advocate for patient- and family-centered healthcare delivery
  • Provide families with community resources
  • Enhance patient safety, quality of care and overall experiences

The workgroup has set goals for improving care and making life easier for families whose children are living with spina bifida. Here are a few examples:

  • Host post-clinic lunches
  • Prepare families for clinic days by providing them with information on what to expect during their visit
  • Optimize clinic scheduling to allow patients and families to see preferred providers
  • Make improvements to the transition program that prepares adolescent patients to move from pediatric care to adult care
  • Develop community social events
  • Improve team communication
Boy in wheelchair on basketball court

Zach's Story

Zach Zurliene and his family love sports. Despite being born with spina bifida, it hasn’t stopped him from playing baseball for the Miracle League of Arizona (MLA) and wheelchair basketball at Ability 360 in Phoenix.

Always facing challenges with courage, Zach strives to inspire others. In a recent video for MLA, the spunky, outgoing 14-year-old offered encouragement to kids living with physical disabilities. “Don’t lose hope,” Zach advised. “Do something with your life, and make it happen.”

Zach began receiving care at Phoenix Children’s at age 5, when his family moved from Colorado to Arizona. His mother, Kim Zurliene, was grateful when Phoenix Children’s established the Spina Bifida Clinic several years ago.

Now, instead of having multiple appointments with different specialists each month, she can take Zach to one clinic visit each year. During these visits, which last about four hours, he sees every specialist involved in his care – from a neurosurgeon, urologist and gastroenterologist to an orthopedic specialist, physical therapist and other professionals. Zach’s family can also make additional appointments as needed.

“Being able to see all of our specialists in one day definitely streamlines the process,” Kim said. “It’s been a huge timesaver for us, and from a convenience perspective, it has been so nice to have everybody see Zach all at once.”

Kim recently became a member of the Spina Bifida Patient/Parent Workgroup, which launched in February 2023. She accepted the invitation to join the group because she believes parents have valuable insights to share, based on their experiences at Phoenix Children’s.

“For parents of children living with disabilities, having the opportunity to give feedback is important to help build and create a really great program,” Kim shared. “Phoenix Children’s has been amazing for us. They are always on top of everything – such as making sure Zach’s prescriptions are ready when we need them – and that there are no gaps in his care. Zach is extremely social, and it’s wonderful to see that he’s able to talk with his doctors, and they explain things in kid language so that he understands what’s going on. Everything is also family friendly, so we know what’s expected and what resources we need at each stage of his development. We are so grateful for the care he’s receiving at Phoenix Children’s.”