The Phoenix Children’s Heart Center Interstage Home Monitoring Program has been active for more than 13 years in the Phoenix area and is one of only 68 interstage monitoring programs in the country. We have followed more than 350 babies since the beginning of this program. We support families and children on their journey with complex congenital heart defects, which is unique for each family. For all of these families though, their baby has had to endure heart surgery during the neonatal time period in the first 7-10 days after birth. Following this first surgery, their circulation remains vulnerable and the babies are at risk for a sudden life threatening event until they are big enough to have a second heart surgery, typically around 4-6 months of age.
It is during this time, when their circulation is most vulnerable, that they become part of our program. Parents learn the complex care needed to keep their babies safe at home including giving medicines, feedings and handling the equipment including an infant scale, heart rate and oxygen saturation monitor as well as feeding tubes and pumps. The Cardiac High Acuity Monitoring Program for Infants and Newborns (CHAMPION) team works closely with parents to provide a safety net for these complex babies and keeping them safe at home. We work together with families using daily communication about their baby and frequent communication with the cardiac surgery team and the pediatrician. The CHAMPION team also provides a medical home for these fragile babies.
At Phoenix Children’s Hospital we are fortunate to have a stellar Heart Center team that all work together to care for these complex patients. In addition, we are a very active participant in a national collaborative focused on quality improvement called the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC). This group includes collaboration between cardiologist, surgeons, researchers, parents and patients to carefully investigate long-term clinical outcomes for these very fragile patients and guides us in the best practices to keep our littlest Heart Center superheroes safe at home. Our team is then readily equipped to apply national standard of care management strategies and goals to these patients throughout their journeys.
Annual Celebration
Every year, we celebrate life, heart and success at our CHAMPION Graduation event during national Heart Awareness Month (February). At this event, we invite all of the previous year’s ‘graduates’ of our Interstage Home Monitoring Program back to Phoenix Children’s Hospital for a special celebration in recognition of their successful navigation of this part of their journey. The theme is Super Heroes, and we even have some caped crusaders present for the event! Due to the current viral pandemic, we will not be holding the CHAMPION Graduation this year, but plan to carry forward all of our 17 graduates from the 2020 class to the next celebration, tentatively scheduled for February 2022.
Happy Heart Month!
Amy L. Svenson, MD
