What is a congenital single ventricle heart defect?
Babies born with single ventricle anatomy share the common feature of having only one working ventricle, or pumping chamber, instead of two. In these cases, the nonworking ventricle and the blood vessels or valves surrounding it are very small and have not been properly formed during development. As a result, the heart cannot pump blood to the lungs and the body in the usual way. Some examples of these congenital single ventricle heart defects include hypoplastic left heart syndrome (HLHS), pulmonary atresia, double outlet right ventricle or double inlet left ventricle, and unbalanced atrioventricular canal defect. Multiple heart surgeries are required to provide the best possible blood circulation for a baby's body. Infants with single ventricle defects require placement of a shunt to provide blood flow to the lungs within the first week of life.
About the Single Ventricle Program at Children's
The Single Ventricle Program at the Children's Healthcare of Atlanta Heart Center cares for children with the most complex congenital heart defects. This program is particularly focused on the interstage period, a high-risk period of time between a baby's first heart surgery and second heart surgery, also known as the Glenn operation. Extra monitoring is required during the interstage period to help detect complications, assist the baby in achieving optimal growth and improve the baby's chances of survival and quality of life. Our program is part of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), whose mission is to improve the care and outcomes of infants during the interstage period.
What to expect at the Single Ventricle Program
- Personalized care
- Your child's care plan will be adjusted based on his or her specific needs throughout the entire interstage period.
- Treatment from a multidisciplinary team
- Your child's team will consist of a surgeon, a cardiologist, nurses, a social worker, a nutritionist and a nurse practitioner to ensure all of your child's and family's needs are met.
- Renowned surgical care
- We are ranked as one of the top pediatric cardiac programs in the country by U.S. News & World Report.
- Consistent nursing care
- A dedicated nurse practitioner will be available to your family as a familiar face throughout the entire interstage period.
- Accessibility to your child’s healthcare provider
- Your child's care will include weekly phone calls and cardiology appointments. A 24-hour call line is available to you for any questions or concerns.
- Before your child is discharged, you will be educated about how to care for your child at home.
How can I care for my child at home?
Our team works closely with patient families to set up a home monitoring plan that allows them to track their baby's weight, oxygen levels and fluid intake while at home. Extensive education and home monitoring helps parents and caregivers actively participate in the care of their babies outside of the hospital and ease their transition to the second surgery.
Tips for successful home monitoring after hospital discharge
- Communicate with your child's medical team.
- Let us know about any concerns, questions or accomplishments.
- Don't be afraid to ask for help.
- We know that it can be scary and hard to go home. We encourage you to rely on us to provide you with any help or resources that you may need.
- Keep a calendar.
- A calendar will help you keep track of important details and dates regarding your child's treatment, such as medications, feedings, home monitoring and appointments