Single Ventricle Program

• Seattle Children’s has the medical and surgical expertise to handle even the most complex single-ventricle defects – from fetal diagnosis through treatment and lifelong follow-up care.
• The Heart Center team includes more than 40 pediatric cardiologists who diagnose and treat every kind of heart problem. In the past 5 years, we have treated more than 200 newborns with single-ventricle defects.
• Our doctors and surgeons are experts in the treatments your child may need. These may include surgery to change the blood flow in your child’s heart, a hybrid procedure or a heart transplant.
• Our 4 pediatric cardiac surgeons perform more than 500 procedures yearly. Our surgical outcomes are among the best in the nation year after year. See our outcomes for surgeries related to single-ventricle defects.
• We also have a pediatric cardiac anesthesia team and a Cardiac Intensive Care Unit ready to care for children who have heart surgery.
• The weekly Single Ventricle Interstage Clinic brings together specialists in cardiology, nutrition, social work, feeding therapy and neurodevelopment to support your child’s health between surgeries.
• The transplant team does several heart transplants each year for children with single-ventricle defects or other heart problems that cannot be controlled using other treatments. 
• Your child’s team includes experts from other areas of Seattle Children’s based on their needs, like doctors who specialize in newborns (neonatologists) or lung health (pulmonologists).

• If your developing baby is diagnosed with a single-ventricle defect before birth, Seattle Children’s Fetal Care and Treatment team works closely with you to plan and prepare for any care your baby may need.
• Your child’s treatment plan is custom-made. We plan and carry out their treatment based on the specific details of their heart defect. We closely check your child’s needs to make sure they get the care that is right for them at every age.
• If your child has a Fontan procedure, the team in our Fontan Clinic provides coordinated, team-based care through childhood and young adulthood.
• We have a special Adult Congenital Heart Disease Program to meet your child’s long-term healthcare needs. This program, shared with the University of Washington, transitions your child to adult care when they are ready.

• Whatever type of care your child needs, we will help your family through this experience. We will discuss your child’s condition and treatment options in ways you understand and involve you in every decision.
• Many of our single-ventricle patients come from outside the Seattle area. We know you may be away from your home, community and usual support systems when you are here for appointments or surgeries. We are here to help you and your whole family during this time.
• Our Child Life specialists know how to help children understand their illnesses and treatments in ways that make sense for their age.
• Seattle Children’s has many resources, from financial to spiritual, to support your child and your family and make the journey as smooth as possible.
• Read more about the supportive care we offer.

• The Heart Center team at Seattle Children’s takes part in the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC). This group works to improve the outcomes and quality of life for all children with single-ventricle heart defects. The NPC-QIC also offers resources, support and information for families.
• Read more about the Heart Center team’s research and advances.

Doctors usually diagnose single-ventricle defects during pregnancy with a fetal echocardiogram or right after birth with an echocardiogram.

Through our Fetal Care and Treatment Center, we work with parents to diagnose congenital heart defects during pregnancy. We provide thoughtful counseling and pregnancy management support. This lets you and your child’s doctors plan for the care your baby will need right after birth.

Because these defects are so complex, your child’s care team needs to get an accurate picture of your child’s heart. Our heart doctors (cardiologists) and heart surgeons use advanced imaging techniques to do this. We use methods like cardiac MRI (magnetic resonance imaging), echocardiography and 3-D imaging. These let us make a personalized repair plan for your child and check your child’s progress.

Your baby will likely need a series of surgeries during infancy and childhood to improve their blood flow. These surgeries change their blood flow to a system called the Fontan circulation.

The exact procedures and timing depend on your child’s needs. We take into account your child’s diagnosis, symptoms and body. The surgeries are done in stages during the first few years of life.

Having experienced pediatric heart surgeons is very important. Seattle Children’s heart surgeons know not just how to operate but when and which type of surgery your child needs. Each has more than 12 years of training in complex procedures for newborns and infants and has advanced fellowship training in congenital heart surgery. They are national leaders in the use of mechanical heart assist devices, including extracorporeal life support, as well as complex pediatric heart transplantation. Our outcomes for surgeries to change blood flow in the heart are among the best in the nation.

Heart doctors at Seattle Children’s are leaders in using advanced techniques, such as hybrid procedures and patent ductus arteriosus stenting, for babies with complex heart problems. Hybrid procedures combine surgery and cardiac catheterization. This approach can be lifesaving for babies who are too sick to go through open-heart surgery or too small for other treatments.

The first 6 months of life are called the “interstage” period. It is the time between your child’s first and second surgeries.

During this time, babies with single-ventricle defects are at risk for serious health problems from common childhood illnesses, like colds, and they may have trouble feeding and growing.

Our clinic provides comprehensive care between surgeries. The focus is to improve your child’s growth and development and to prevent life-threatening events. A team of specialists works with you and your child’s primary care provider to help your child be as healthy and active as possible.

Our weekly clinic includes:

• Team-based (multidisciplinary) care. Your child’s team includes heart doctors (cardiologists), registered dietitian nutritionists, feeding therapists, social workers, neurodevelopmental pediatricians and others. We bring specialists together at the same clinic appointment. This means fewer visits to the hospital for you.
• Home monitoring. We track your child’s symptoms, oxygenation, feeding progress and weight. This makes it easy for your child’s Heart Center team to get important details and can help detect problems early. It helps all families, especially those who live far from our Seattle campus.
• Education. We answer your questions and make sure you and your family understand all you need to know about the care of your child.
• Clear communication. To make care as seamless as possible, specialists in the Heart Center keep in close touch with your child’s primary care provider.

After your child has their third surgery, the Fontan procedure, to change their blood flow, they will need ongoing care to prevent and treat conditions that can happen as they continue to grow and develop. Seattle Children’s Fontan Clinic provides coordinated, team-based care to promote the best possible health for children and young adults who have had a Fontan procedure.