Babies with single ventricle physiology are fragile when they leave the hospital. While this time at home with family is important, we know that there is an increased risk of potentially life-threatening medical complications in the time between birth and their second major operation, typically performed around six months of age. To help these babies stay as safe as possible during this high-risk “Interstage Period”, we’ve developed the Interstage Home Monitoring (IHM) Program which focuses on home monitoring of oxygen saturation levels, caloric intake, and weight gain in addition to early recognition of “Red Flag” symptoms. Research shows that close follow-up and daily monitoring of a baby’s saturations, weights, and nutritional intake has decreased mortality by as much as 50% in this population. The unique program at Lurie Children’s has taken this monitoring one step further in collaboration with our Telehealth Programs to include weekly scheduled video visits with the patient and family in their home, along with daily remote patient monitoring.
Our team will discuss the IHM with you in detail before your baby goes home. We will work closely prior to discharge to update and coordinate the care plan with your primary care provider, your cardiology team at Lurie Children’s or the doctor who referred you, and other specialists involved in your child’s care.
You will learn the key components of your baby’s care as you prepare to be discharged and take your child home. After being in the hospital for many weeks, it may take some time to adjust to being home. Please take your time, be patient with yourselves, and find ways to celebrate your newest family member being home with you.
The care team will also work with you on completing a Roadmap to Home. This document will give you detailed information about what important milestones need to be achieved prior to safe discharge. This includes each aspect of your child’s care, such as general information, medication, feeding and follow-up care. The Roadmap to Home also helps ensure that you and your care team have the same understandings about your child’s care plan. See the Roadmap to Home template.
Tools to Care for Your Baby
When your baby is discharged, you will be given:
A pulse oximeter (a painless sensor device that measures oxygen levels in the blood) and a baby digital scale.
A specially-configured iPad that will allow you to record your child’s vital signs, share other important data about your child’s condition and attend weekly Telehealth video calls with the care team. See more information about Telehealth Monitoring below.
A binder that includes a one-page healthcare dashboard so that you can quickly and accurately share important medical information with any healthcare team your baby may meet. See an example.
Telehealth is the use of technology to provide healthcare remotely, often in the patient’s home. This includes sharing electronic healthcare information in a secure way to ensure you and your child’s privacy is protected. In our IHM program, we use Telehealth video programs to connect patients, parents, and providers face-to-face from the comfort of the family’s own home. This easy access to your healthcare providers helps to minimize travel to and from appointments, and improve communication between parents and providers for education, clinical advice, and general support.
Why Use It in the Interstage Period?
During the interstage period between newborn hospitalization and second surgical repair, ongoing monitoring of your child’s condition is critical to management. In the past, families were tasked with manually entering data (oxygen levels, heart rate, nutritional intake, daily weight) into a paper and pencil binder that was then shared with the care team during follow-up appointments. This made timely identification of Red Flags more difficult. Use of TeleHealth technology directly connects parents to the care team to help keep babies safer at home.
*Telehealth devices are on loan temporarily and are returned to Lurie Children’s at the time of discharge from the Interstage Home Monitoring Program (typically shortly after the second surgery).
Learn More About Telehealth Monitoring
Care for children in the IHM Program is coordinated through the High Acuity Transition (HeArT) Clinic in the Division of Cardiology at Lurie Children’s. Our HeArT Clinic is designed to provide highly individualized outpatient care to the most fragile children with heart disease. The HeArT Clinic Team consists of a dedicated pediatric nurse practitioner and cardiologists from Lurie Children’s Single Ventricle Center of Excellence with special expertise in the care of children with complex congenital heart disease. The HeArt Program’s clinical staff is dedicated to assisting neonates and infants with single ventricle physiology in order to optimize healthy outcomes, foster developmental care, and facilitate smooth transitions between the hospital and home. Parents are asked to log their baby’s health data into the Locus Health iPad platform daily. This data is then reviewed daily by the nurse practitioner and nurse coordinator. If everything is going well, the data will be reviewed with you during a scheduled weekly Telehealth call in the comforts of your own home through the Polycom app on your iPad. If any of the health data raises a Red Flag, the iPad app will prompt you to immediately contact the healthcare team who can determine next steps. The team can arrange for a visit to the clinic or hospital or, in some cases, conduct an on-the-spot Telehealth call in order to continue to manage the situation at home.
NICU-Cardiac Neurodevelopmental Program
Research shows that children with complex congenital heart disease are at risk for neurodevelopment issues when compared to healthy children. The NICU-Cardiac Neurodevelopmental Program (NCNP) at Lurie Children’s is one of only a few programs in the country that provides individualized care to ensure these high-risk children reach their full potential later in life. The multidisciplinary team of experts in the NCNP program works with children and their families to identify and address any developmental concerns and to help families build a solid foundation for later learning and future success. The program follows children from birth through graduation from high school.
We know that children with single ventricle physiology are at risk for a variety of neurodevelopmental and psychosocial issues in the long term, even if they seem to be meeting their developmental milestones early on. Continued and careful surveillance by a team with specific expertise in the challenges faced by our cardiac patients is critical to ensure these children have the best possible long term functional outcome and quality of life. See a list of developmental milestones.
Children in the IHM Program are typically given an appointment prior to initial hospital discharge. The first appointment is usually around nine months of age with continued periodic follow-up throughout childhood.