Congenital heart disease is a defect in the heart’s structure that’s present at birth. It can be detected before birth, soon after birth or any time during childhood or adulthood. Infants born with certain congenital heart defects, such as single ventricle anatomy, are at a higher risk for complications during infancy and the interstage period. The interstage period is the time between a baby's first heart intervention/surgery and their second heart surgery (often between 4 to 6 months of age). This is a high-risk period of time for a baby because they’re very fragile and require close monitoring.
The Infant High-Risk Program uses leading edge medical equipment technology to monitor babies at home. Our team partners with our patients’ parents/caregivers to identify small, subtle changes in babies before a more serious event can occur.
Our goal is to keep patients at home where they can thrive with their family. The Infant High-Risk Program is a resource for parents/caregivers to feel empowered, informed and comforted as they navigate through their baby’s unique heart journey at Cleveland Clinic Children’s.
What is a single ventricle?
Each side of a heart has a job. The right side moves oxygen-poor blood to your lungs to get oxygen and the left side sends oxygen-rich blood to your body. In a baby with single ventricle anatomy, one side of their heart is too small to work effectively. Each single ventricle defect is unique and may require different surgeries or interventions. Individualized care plans will be developed by our pediatric cardiology team based upon a baby’s specific heart structure.
Conditions We Treat
Infants born with certain congenital heart defects, such as single ventricle anatomy, can have altered blood flow to their lungs. These infants will be followed during the interstage period. Congenital heart defects can include:
- Aortic and mitral atresia.
- Blalock-Taussig (BT) shunt.
- Double inlet left ventricle.
- Double outlet right ventricle.
- Hypoplastic left heart syndrome (HLHS).
- Pulmonary atresia.
- Single ventricle anatomy.
- Tricuspid atresia.
- Unbalanced AV canal.
If your baby has a congenital heart defect not mentioned above, please contact us at 216.444.9106.
Home Monitoring Program
What is home monitoring?
Having a baby with a heart defect can be extremely scary, but many babies born with congenital heart disease will do well with mediation and treatment. All parents/caregivers who have babies enrolled in the Infant High-Risk Program will receive the necessary tools to track key indicators of their baby’s well-being while at home. Our home monitoring program starts with dedicated and individualized teaching at the bedside to help parents/caregivers prepare for life at home with their baby.
Your baby will need extra care for their heart along with all their other regular well-child care. Upon discharge, our team will form an important partnership with your baby’s pediatrician or primary care provider. Together, we will collaborate to provide your baby with the care they need during the interstage period.
What should a parent/caregiver expect after discharge?
Upon discharge from the hospital, parents/caregivers will have 24/7 access to a member of our pediatric cardiology team. Your baby’s heart diagnosis will determine the necessary monitoring and frequency of visits (both virtually and in-person). Through MyChart, we use a specialized data collection program called Care Companion. Care Companion allows our team to track key indicators of a baby’s well-being at home. This data collection may include a pulse ox, weight and/or feeding intake. Closely monitoring these key indicators allows the Infant High-Risk team to provide early interventions for subtle changes in your baby’s condition, as needed. The equipment and education necessary to pull this data will be provided to families prior to their baby’s discharge.
The Infant High-Risk team is a designated multidisciplinary team of pediatric medical professionals at Cleveland Clinic Children’s that provides your baby with collaborative, individualized care while enrolled in our program. The team includes:
- Bradley Marino, MD
- Hani Najm, MD
- Francine Erenberg, MD
- Rukmini Komarlu, MD
- Holly Nadorlik, MD
- Madalsa Patel, MD
Meredith Tomasko, CNP
Mary Antel, BSN, RN
Alexandria Gill, MSN, RN
Jennifer Tenbrook, LSW
Abigail Demianczyk, PhD
Christina DeTallo, MS, MBA, RD, CSP, LD
We also closely partner with different specialties within Cleveland Clinic Children’s, as needed, to provide your baby with an individualized, comprehensive plan to meet all their healthcare needs.
Resources for Families
American Heart Association (AHA)
Extensive website with handouts that discuss many of the more common forms of congenital heart disease and necessary surgical repair/interventions, including diagrams.
The Children’s Heart Foundation
The country's leading organization solely dedicated to funding congenital heart defect research.
Originally founded as the Pediatric Congenital Heart Association in 2013, their name was changed to Conquering CHD. Conquering CHD serves as a beacon of hope for CHD patients and families and we invite you to join us in the fight against the most common birth defect.
Cove Point Foundation of Johns Hopkins University
Provides diagrams of Congenital Heart Defects; explains the different types of test and surgeries each defect will require. This resource provides valuable information about nutrition, exercise and pregnancy.
A nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child.
Little Hearts, Inc.
A national organization providing support, education, resources, networking and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect.
Mended Little Hearts
A non-profit, volunteer-based organization providing hope, help and healing to heart patients and their families since 1951. The Mended Little Hearts program works nationally and in communities to support children with congenital heart defects and their families.
National Pediatric Cardiology Quality Improvement Collaborative
A group of clinicians, researchers, and parents from across 60 medical institutions collaborating to improving care and outcomes for babies with single ventricle heart disease.
Saving Little Hearts
Dedicated to helping children with congenital heart defects and their families by providing emotional assistance and educational information primarily through the distribution of Care Packages.
Sisters By Heart
A volunteer organization that strives to help parents with newly-diagnosed babies with hypoplastic left heart syndrome (HLHS). They provide care packages to make your stay in hospital a little easier. They also provide information and links to many resources to help you better understand HLHS. All of their volunteers are parents with children who have HLHS and who understand what you are going through.