A baby born with a single-ventricle heart, such as hypoplastic left heart syndrome (HLHS), undergoes two to three important palliative heart surgeries, often within the first few months of life. The time between the first two surgeries is a high-risk period and is also known as the interstage period. During the interstage period, our program facilitates you to safely take your baby home to grow and await the second surgery.
At Nicklaus Children’s, we understand that caring for an infant during the interstage period can often be a stressful experience. The Heart Institute’s Interstage Clinic consists of a multidisciplinary team to provide specialized care and support. We also facilitate communication with families that have gone through this journey to guide you through yours.
We are also part of the National Pediatric Cardiology - Quality Improvement Collaborative (NPC-QIC) which constantly works to improve care and outcomes in our single ventricle infants.
In addition to HLHS, single ventricle hearts may have other diagnoses such as hypoplastic right heart syndrome (HRHS), double outlet right ventricle (DORV), double inlet left ventricle (DILV), double inlet right ventricle (DIRV), pulmonary atresia, or tricuspid atresia.
How It Works
Parents and caregivers play an important role in their baby’s care journey and are key members of the team. With the help of an Advanced Practice Provider, they receive education and home training to develop the skills needed to care for their baby. This training begins during the postoperative period, well before leaving the hospital. We ensure parents feel comfortable with monitoring and communicating back with the clinicians by documenting their baby’s feeding intake, weight, heart rate and oxygen saturations daily. Parents are provided with essential home equipment such as a digital infant scale, oxygen saturation monitor, and a home-care binder.
Parents and caregivers are asked to download the CHAMP® application on their smartphones or tablets. This application allows our care team to monitor the baby’s vital signs remotely, in real time, and make necessary decisions for the child’s care. More information about the home monitoring technology can be found below.
Most importantly, parents are trained to recognize “red flags” or early warning signs to promote prompt attention and intervention with the main goal of keeping these infants safe.
Red Flags: When to Call Us
- Oxygen saturations are less than 75%
- Appears blue or pale in the face, lips or hands while at rest
- Poor feeding
- Weight loss or failure to gain weight
- Breathing fast or hard
- Diarrhea, vomiting or increased sweating
- Bloody stools
- Less than 4 wet diapers a day
- Irritable, fussy or any change in behavior
- Temperature > 100.4 F
- If you are on your way to any emergency room
Home Monitoring Technology
CHAMP (Cardiac High Acuity Monitoring Program) is an application that makes it possible for the care team to provide support to families through communication as well as the ability to monitor the infant, while at home during the interstage period.
The CHAMP application was developed by the Ward Family Heart Center team at Children's Mercy Kansas City. Nicklaus Children’s is a research study site and one of nine hospital organizations that joined this technology collaborative to extend care to infants during the interstage period.
Contact Us
For more information about the Interstage Clinic, please contact: Stefania.Sarno@nicklaushealth.org.
Additional Family Resources