Seattle Children’s Designated as a Clinic Care Partner by the Spina Bifida Association

Patients with Spina Bifida (SB) have long received comprehensive care at Seattle Children’s for the complex medical issues that often accompany their diagnosis. For the first time ever, Seattle Children’s has been designated as a Clinic Care Partner by the Spina Bifida Association (SBA), the national leader in providing research, education and support, clinical care and advocacy to all those affected by Spina Bifida.

The SBA Clinic Care Partner program works to identify the needs of people with SB and identify clinics with the best outcomes. Clinics who become SBA Clinic Care Partners implement best practices and meets designated standards so that people with SB receive the best care possible to have fulfilling lives. The designation is in effect for five years and identifies Seattle Children’s as a magnet program for caring for children with SB. Seattle Children’s is the only program with this designation in our region, including Washington, Alaska, Montana and Idaho.  

Seattle Children’s Spina Bifida Program provides ongoing medical and developmental care to children born with spina bifida or neural tube defects from birth through 21 years of age and follows over 600 children with SB and SB-related disorders. Many of these children require regular follow up with three or more medical specialties. The multidisciplinary team includes experts from developmental pediatrics, neurosurgery, nutrition, orthopedics, rehabilitation medicine, urology and social work

Over the past two years, the Children’s Spina Bifida program has done considerable work to enhance the program, including:

• Establishing formal leadership roles, including current co-director Beth Kaukl, DNP, ARNP with an additional co-director starting September 1.
• Adding a Nurse Care Coordinator Role, filled by Sarah Coburn, RN, BSN.
• Implementing Healthy Planet Patient Registry to improve follow-up care.
• Adding Urology Advanced Practice Providers in SB clinic to improve Urology access.
• Adding Rehabilitation Medicine Providers to SB Clinic.
• Streamlining the orthopedic evaluation process to ensure appropriate monitoring and referral.
• Adding standardized developmental follow up thorough UW Infant Development Follow-Up Clinic, starting at one year of age.
• Increased access for Neuropsychology evaluations.

As part of meeting the SBA Clinic Care Partner Standards, Seattle Children’s instituted a new process to track essential patient appointments and follow up to ensure children with SB receive their necessary care. This new process has resulted in more regular visits by patient families – especially those who have a difficult time accessing medical care.

For More Information

• To refer a patient to the Spina Bifida Program, visit the Neurodevelopment Program refer a patient page.
• To learn more about the SBA, visit their website.