The Home Monitoring Program is for infants with cardiac disease who are at risk of sudden death or other serious problems when they are sent home from the hospital. Most of the patients have a heart defect of a single cardiac ventricle and have had surgery or other interventions in the newborn period, such as those with hypoplastic left heart syndrome (HLHS) who have had a Norwood procedure.
The program enables these high-risk children to be at home in a safe and monitored environment and provides the child and family both physical and emotional health benefits, including better development, improved weight gain from better feeding, better bonding and hopefully, better neurodevelopement.
Preparation for the transition to home is started while the babies are in the hospital recovering from surgery. Each family is given a “journey board” telling them what to expect, and they receive a pulse oximeter and a scale to take home. They are also taught to enter various data into MyChart, Rady Children’s online health portal. At all times, the babies are monitored for any event that would put them at risk; should such an event occur, they are immediately readmitted to the cardiovascular intensive care unit.
The program’s multidisciplinary team meets every week to discuss all patients and review their MyChart data. That same day, the infants are seen in the clinic.
Once patients with HLHS have their second procedure, they are no longer deemed high risk and “graduate” from the program. A graduation ceremony is held to mark this milestone.
The program is a member of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC).
Team
Cardiology
Jessica Haley, M.D., Director, Home Monitoring Program, Assistant Clinical Professor of Pediatrics, UC San Diego
Howaida El-Said, M.D., Ph.D., Director, Cardiac Catheterization Laboratory; Clinical Professor of Pediatrics, UC San Diego
Rohit Rao, M.D., M.B.A., Associate Clinical Professor of Pediatrics, UC San Diego
Kelly Brand, PA-C
Cardiothoracic Surgery
John J. Nigro, M.D., Division Chief; Director, Heart Institute; Director, Cardiac Transplantation and Ventricular Assist Device Program
Neonatology
Jeanne M. Carroll, M.D., Assistant Clinical Professor of Pediatrics, UC San Diego
Denise Suttner, M.D., Rady Children’s NICU Clinical Director; Director, San Diego Regional ECMO Program; Rady Children’s Hospital Chief of Staff; Clinical Professor of Pediatrics, UC San Diego
Pulmonology/Aerodigestive Clinic
Aparna Rao, M.D., Associate Clinical Professor of Pediatrics, UC San Diego
Other team members include a physical therapist, occupational therapist, social worker and registered dietitian.
Resources
National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC): Patient and Family Resources
https://npcqic.org/resources-parents-and-families
Sisters by Heart
http://www.sistersbyheart.org/content/resources
Locations
Rady Children’s Hospital-San Diego (Map it)
Rose Pavilion, 1st Floor South
3020 Children’s Way
San Diego, CA 92120
Phone: 858-966-5855
Fax: 858-966-7903
Contact Us
For more information about the program and other cardiology services, contact the Cardiology division at 858-966-5855.