For their first year of life, babies with single ventricle heart disease require comprehensive care that crosses acute and chronic care settings. We refer to the time between your baby’s first and second procedure as the Interstage period. During this timeframe, babies are at a higher risk for mortality (as high as 10%) due to their reliance on a single functional chamber pumping blood to the lungs and body. Participation in specialized programs with specific expertise in the care of this fragile population has been shown to improve growth, development, and survival in these infants.
During this period your baby will be monitored by you and our team closely. You will stay connected to your Single Ventricle Center of Excellence team while at home by enrolling in our Telehealth and Tele-Interstage Home Monitoring Program (Tele-IHM). You will be loaned an iPad to keep track of your baby’s oxygen saturation levels, feeding & calories, and weight gain in addition to “Red Flag” symptoms like fevers, fussiness, or any other concerns. Our goal in closely monitoring your child’s health is to pick up on trends that are not easily identified by human eyes that might be an early warning that something is not quite right.
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. Our unique program at Lurie Children’s has taken this monitoring one step further in collaboration with ourTelehealth Programsto include weekly scheduled video visits with the patient and family in their home. This allows parents to stay focused on being parents whilethe care team can watch closely for any changes in your child’s status and rapidly respond as needed. Partnership between our team, your pediatrician, and your family allows us to keep these high-risk patients at home with their families where they belong as much as possible.
What Is Telehealth Monitoring?
Telehealthis 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 Telemedicine 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).
Preparing for Discharge
Our team will discuss the Tele-IHM Program 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.
Our care team will give you a Discharge Checklists that provides 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, medications, feeding and follow-up care. This checklist helps ensure that you and your care team have the same understandings about your child’s care plan.
Tools to Care for Your Baby at Home
When your baby is discharged, you will be given:
A pulse oximeter (a painless sensor device that measures heart rate and oxygen levels in the blood) and a digitalbaby scale.
A speciallyconfigured iPad that will allow you to record your child’s vital signs (for example heart rate, oxygen level, daily weight), 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.