Cardiac High-Risk Interstage Program
The CHOC Cardiac High-Risk Interstage Program is a home-monitoring program that supports babies and infants with congenital heart disease during the interstage period. The “interstage” is the time between a baby’s first and second heart procedures specific to single ventricle heart conditions. This is a very critical time where home monitoring can save lives. The consistent observation helps healthcare providers identify a possible problem early on. Our program gives you the tools you need to monitor your baby’s health and provides an easy and reliable connection to your CHOC care team. We’re here to support you and your baby every step of the way.
Who can participate in the Cardiac High-Risk Interstage Program?
If your baby receives care from the CHOC Heart Institute and has a high-risk cardiac condition requiring multiple interventions in their first year of life, they’ll be eligible to participate in our program. This includes most babies with a single ventricle defect who require a series of interventions to support proper blood flow from their heart to the lungs or their heart to the rest of the body. Your baby will most likely be considered for the program if:
They have any of these congenital heart conditions:
- Hypoplastic Left Heart Syndrome (HLHS)
- Tricuspid Atresia
- Pulmonary Atresia
- Double Outlet Right Ventricle (DORV)
- Double Inlet Left Ventricle (DILV)
Or undergo any of these treatments:
- Norwood Operation
- BT Shunt (Aortopulmonary Shunt)
- PDA Stent
- Hybrid Stage 1
What to Expect: Interstage Period
While every baby’s journey is specific to their individual needs and condition, most families’ interstage periods last between 3-6 months. Below is a short overview of what you can expect during the interstage period.
- Going Home: Before your baby can go home you will be asked to learn how to care for them. We recommend spending as much time at the bedside as you can. During this time, you’ll meet our team who will teach you how to properly monitor and care for your baby during the interstage. This includes a lesson on using the equipment, recording measurements on the iPad, recognizing red flags, when to call a doctor and what to do in an emergency. Your home monitoring equipment includes:
- Weight Scale
- Pulse Oximeter
- Daily Monitoring: We will ask you to record your baby’s heart rate, weight and feedings. You’ll enter that information into the iPad where it will be reported to your care team. Evaluating your baby’s progress during interstage will help the team identify when they’re ready for the next surgery.
- Weekly Check-Ins: You’ll have a regularly scheduled weekly check-in with one of our nurse practitioners (NP). You can meet at an in-person appointment or via phone call or telehealth. During this meeting your nurse practitioner will review the numbers you logged in the past week. They’re looking for any changes in your baby’s health that suggest an update to your baby’s medication or feeding is needed. Your nurse practitioner will work closely with your baby’s cardiologist to provide regular updates on their interstage progress.
- Recognizing Red Flags: Our program handbook will include information on red flags to watch for. These are symptoms or signs of a potential problem and require special attention from a healthcare professional. If you are concerned about your baby, do not hesitate to reach out to your baby’s nurse practitioner or cardiologist.
- Feeding Regimen: Babies heal better after their surgery when they get enough nutrition. Your baby might need extra nutrients to help to gain weight because of their condition. Your team will include a registered dietitian (RD) who will set up a feeding regimen specific to your child’s needs. This might include fortifying feeds, where formula will be mixed in breastmilk or other liquids to provide more calories. Just like your nurse practitioner, the registered dietitian will monitor your baby’s growth, eating habits and bowel movements to make sure their diet is appropriate. The dietitian will join your visits with the nurse practitioner from time to time.
Pediatric Heart Surgery at CHOC
If your baby is diagnosed with a single ventricle heart defect, CHOC is here to help. The Heart Institute’s surgical team offers the latest in cardiac surgical techniques to repair congenital conditions in newborns and includes board-certified, pediatrics-trained heart surgeons and cardiac anesthesiologists. Learn more about pediatric heart surgery at CHOC.
The Fetal Care Center of Southern California
If your baby is diagnosed with a single ventricle heart defect in utero, our experts at The Fetal Care Center of Southern California are here to help you every step of the way. Our multi-disciplinary pediatric specialists work together to develop an individualized treatment plan to safely deliver your baby and provide them with the care they need after birth. Learn more about The Fetal Care Center of Southern California.
NPC-QIC Interstage Clinical Research
Our interstage team is part of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) network. The NPC-QIC works with families, clinicians, researchers and patients to collect data on the best ways to support babies with hypoplastic left heart syndrome, and other similar conditions, to improve patient outcomes.
Community Support and Resources for Congenital Heart Conditions
Receiving a diagnosis for a congenital heart defect can be hard for you and your family. There are many support resources and communities available within and outside of the hospital. Explore congenital heart condition community groups: