Name of Program: Seattle Children’s Hospital/University of Washington
Year Program Established: 2015
Program Leaders: Lisa Herzig MD, Amy Schultz MD, Lindsay Edwards MD
Key Staff and Specialties:
Developmental Pediatrics: Lisa Herzig MD, Cara Pierson ARNP
Cardiology: Amy Schultz MD, Lindsay Edwards MD, Titus Chan MD
CICU Nursing: Caitlyn Romoser RN, Jessica Olsen RN
Cardiac Surgery: Molly Sumner ARNP
Psychology: Kathleen Lehman PhD, Megan Goldenshteyn PhD
Physical Therapy: Jenn Fridgen DPT, Brooke Fitterer PT DPT PCS, Amber McCreary PT
Occupational Therapy: Sue Wendel MS OTR
Audiology: Lisa Mancl MS CCC-A
Speech Therapy: John Thorne PhD CCC-SLP
Mollie Royer MSW Social Work
Nutrition: Beth Ogada MS RDN, Lauren Boyer RD, Deonna Monnahan RD
Parent Advocate: Sue Adelman
Administrative support; Loanie McNeff, Patient Services Specialist; AnnLee Rinehart and Celina Chacko, Heart Center data specialists
Age Range of Patients Served: birth – 18 years
Description of Inpatient Program(s):
- Routine screening of all cardiac surgery inpatients for need for specialized neurodevelopmental followup. Referrals to outpatient Cardiac Neurodevelopmental Clinic initiated at time of hospitalization and caregiver counseling regarding these referrals is provided.
- Developmental Care program in Cardiac Intensive Care Unit: includes developmentally optimal positioning, noise/light mitigation, quiet hours, and care clustering, oral feeding/breast feeding support, encouragement of parent holding and skin to skin, nonpharmacologic pain management, thermoregulation, promotion of developmentally appropriate activities/therapy, eliminating screen time.
- Inpatient Reach Out and Read program: Book distribution to cardiac surgery patients < 6 years coupled with caregiver counseling regarding benefits of reading aloud and developmentally appropriate book-sharing strategies.
- Feeding therapy and nutritional support; music therapy.
Description of Outpatient Program(s):
- Cardiac Neurodevelopmental Clinic: multidisciplinary developmental follow up clinic for children with congenital heart disease. Team members include: Developmental Pediatrician, Psychologist, Social Worker, Audiologist, Physical Therapist, Occupational Therapist, Speech Therapist, Parent Advocate, Dietician. Evaluation schedule is aligned with CNOC recommendations.
- Interface with other multidisciplinary clinics that provide follow up for children with heart disease to avoid duplication of developmental assessments and services (e.g. 22q Clinic).
- Outpatient Reach Out and Read Program: Book distribution to patients <6 years old being seen in Cardiac Surgery postop clinic or Cardiac Neurodevelopmental Clinic, coupled with caregiver counseling regarding benefits of reading aloud and developmentally appropriate book-sharing strategies.
- Feeding therapy and nutritional support
Description of research or QI projects in cardiac neurodevelopment – undergoing or accomplished:
- Development of a multidisciplinary Cardiac Neurodevelopmental Clinic (accomplished)
- CICU Developmental Care QI Projects (accomplished)
- Implementation of Heart Center Reach Out and Read program (accomplished)
- Implementation of CNOC Registry (accomplished and ongoing for new modules)
- Inpatient Developmental Rounds implementation (ongoing)
Unique features and strengths of this program:
- When developing and implementing our Cardiac Neurodevelopmental Clinic, we were able to draw on the established resources of the University of Washington’s Center on Human Development and Disability, a comprehensive interdisciplinary research and training center focusing on a wide array of developmental disabilities.
- Our Heart Center serves a unique region which includes Washington, Alaska, Montana, and portions of Idaho. These states encompass 24% of the United States’ land mass but only 3% of its population. In addition, the Pacific Northwest is home to a wide variety of cultures and languages; 16% of our patients identify a language for care other than English. To serve this diverse and geographically widely distributed patient population, our team must think creatively about how to make developmental evaluations and services available across our catchment area.