Infants born with single ventricle (SV) cardiac diseases usually undergo three surgeries that occur between infancy and age five to redirect blood flow for survival. Currently, the mortality rate for these children is high.
The Cardiac High Acuity Monitoring Program (CHAMP) is a proactive, technology-based home monitoring system used by parents to communicate with a multi-disciplinary team to track the condition of their baby between the first and second surgery, while they recover at home.
The initial surgery takes place during the first weeks of an infant’s life, and the child is closely monitored in the intensive care unit until he or she is released to go home. The time between the first and the second surgery is known as the interstage period. This is a high-stress time for both parents and the care team because these children are high risk for sudden, unexplained death.
The CHAMP system provides support for parents, improves care for infants, and contributes to educational data. The program is revolutionary because it shifts data collection from manual to a technology-based model.
Information about the child is entered by parents into the CHAMP application then securely transmitted using cloud-based technology. The CHAMP team can access and review the data in real-time using a web portal and electronic health records. Previously, patient triage was based on information collected manually by caregivers and submitted weekly to the clinical team. Early intervention significantly improves survival outcomes for the children, and the CHAMP data helps providers to predict the care needed for the child.
This technology enables the nursing team to review the data quickly and identify potential issues, communicate with the rest of the clinical team, and expedite care. In addition, the app is designed to recognize red flags and can page the team if necessary.
WVU Medicine Children’s is one of the first hospitals in the nation to participate in this remarkable program. This approach decreases the cost of care by enabling the infants’ interstage data to be reviewed more frequently with goals of reducing clinic and emergency room visits and ICU admissions. Since the program is grant-funded through the Claire Giannini Foundation, there is no additional cost to the family.
How CHAMP works
Between the first and second surgery, children with single ventricle defects can experience acute changes in their condition that may require swift changes to their treatment or hospitalization. Parents assume a significant role in the home monitoring of their child. They are provided with a tablet furnished by CHAMP. It comes pre-loaded with an app designed for data collections and communication with the team.
The CHAMP app provides the medical team with real-time information about the child on a daily basis. The nursing team reviews the data, and meets weekly to discuss the child’s progress. The CHAMP team maintains contact with the family at least once per week via email or phone calls.
The app is designed to directly page the physicians in the event of a red flag, and CHAMP providers are on-call 24 hours a day, seven days a week to provide support for immediate issues.
Following the child’s second cardiac surgery, the child completes CHAMP and continues to follow with his or her pediatric cardiologist.
What to expect
The app is used to collect manually entered data, including oxygen saturation levels, weight and feeding logs, and daily videos of the child.
Before an infant is released from the hospital, the CHAMP team educates the parents about monitoring and entering data in the app. They also learn about their baby’s heart defect, how to identify red flags or potential problems, and how to respond.
The Champ team trains parents to use the equipment for home monitoring, including:
- The tablet
- The CHAMP application
- Oxygen saturation monitor
- Feeding equipment
In addition, parents are trained to do the following:
- Weigh the child
- Check the heart rate and oxygen saturation
- Document feeding volumes
- Document wet and dirty diaper counts
- Video the baby using the CHAMP tablet
Click to download the Champ Home Caregiver Instruction Manual.
Follow-up and other care
During the interstage period, the child may require care and evaluation by other specialists. We work closely with other specialists as well as with the child’s pediatrician and cardiologist to provide the best care.
We also require parents to receive CPR training prior to the infant’s discharge from the hospital.
Why do I need to video my child daily?
Videos are useful for assessing changes in the baby’s condition, particularly if there is a red flag alert.
What are the red flags to watch for?
Contact the nurse coordinator for any of the following:
- Temperature over 101 degrees F
- Vomiting or diarrhea (more than three episodes in 24 hours)
- Increased work of breathing or stopping to breathe during feeding
- Low oxygen saturations (less than 70%)
- Feeding difficulty
- Increased sweating during feeding
- Excessive spitting
- The child does not gain an average of 20 grams/day over 7 days
- Three days of consecutive weight loss
- Fewer than four wet diapers per day
- Bloody stools
- Irritability or decreased response to you
- Any behavior or bodily change that worries you
How did this program start?
The original Cardiac High Acuity Monitoring Program (CHAMP®) was created by the Ward Family Heart Center team at the pediatric academic medical center Children’s Mercy Hospital located in Kansas City, Missouri. This program was developed and maintained with funds generously provided by the Claire Giannini Foundation.
The technology-based program was designed to improve communication, interstage patient monitoring, and decrease infant mortality. CHAMP uses a caregiver-driven model that includes continuous monitoring seven days a week, computer/tablet data collection, daily data transfer, and video evaluation.