Single Ventricle Program FAQ

What should we expect on the day of our visit?

Clinic visits are typically around four hours long. On the day of your visit, you and your child will have the opportunity to meet our entire team of specialists, who will examine your child and answer any questions you may have. Your child may also have tests done during the visit, including an echocardiogram, EKG, treadmill exercise test, abdominal ultrasound, and labs. Some of these tests may need to be done at Lucile Packard Children’s Hospital Stanford in Palo Alto, and some can be done in our Sunnyvale clinic. Some families prefer to have all the tests done in one day, and some prefer to spread the tests over several days; we will work with you to coordinate times that are most convenient for you. Your child may also participate in a half-day neurodevelopmental assessment; this will be done the day before or the day after your clinic visit.

What do we need to bring with us to our visit?

We will send you some forms to complete prior to your visit and ask that you return the forms to us before your visit. These forms may include a food diary, so that our nutritionist can best help your child during the visit, and neurodevelopmental questionnaires, to help our neurodevelopmental psychologist determine your child’s developmental needs. Some of the neurodevelopmental questionnaires may need to be completed by your child’s teachers ahead of time.

Do you need any of my child’s medical records?

Yes, we will need your child’s medical records, and our team will work with your pediatrician and pediatric cardiologist to obtain them. You do not need to bring any medical records with you on the day of your visit.

How do you work with my child’s pediatric cardiologist?

Our comprehensive Single Ventricle Program is designed for children of all ages with single ventricle anomalies and is meant to complement the care your child already receives from his or her pediatric cardiologist. Your child’s primary cardiac needs will continue to be overseen by your child’s pediatric cardiologist. We offer cardiac screening but also screen and evaluate for needs beyond the heart, including in areas of growth and development, social and emotional well-being, and liver and bone health.

What are the expected outcomes for my child with a single ventricle?

Outcomes for children born with a single ventricle improve each year. Outcomes vary depending on what type of single ventricle condition your child has, but in the early years, the survival rate with heart surgery is high. Experience matters, especially when it comes to heart surgeries. Know that our heart center’s surgery outcomes are excellent, even though we treat some of the most critically ill children in the world. Our heart surgeons perform more than 700 open-heart surgeries each year, which is significantly more than other children’s hospitals in the country. Should you be interested only in our providing a second opinion or talking with your local cardiologist about your child’s needs, we would be happy to do so. We are here to support your and your child’s goals. Beyond survival, we expect a baby born with single ventricle heart disease to have an active, healthy childhood and adolescence, and many of our patients will eventually transition to adult care in our Adult Congenital Heart Program.

How does my child get referred to the program?

Please have your child’s pediatrician or pediatric cardiologist send our referral form to Stanford Medicine Children’s Health Referral Center by fax (650-721-2884). Referring providers can also refer patients electronically via the Stanford Medicine Children’s Health MD Portal. We welcome the chance to collaborate with your child’s pediatrician or cardiologist to provide the very best care for your child.

Will this be covered by my insurance?

Precertification or authorization for the visit and all recommended procedures will be obtained prior to your visit. If you have any questions regarding preauthorization, please call us at (650) 736-9912.

Do you provide assistance for travel arrangements and accommodations?

If you need any help arranging travel plans or housing and lodging, please contact our Stanford Housing Helpline at (650) 498-7971. For transportation assistance, call (650) 736-2108.

Besides assistance with housing and lodging, we welcome you to take advantage of the wide variety of patient and family services, including child life and creative arts, interpreter services, and spiritual care, available when you visit Stanford Medicine Children’s Health.

How often will my child be seen in the Single Ventricle Program clinic?

Visits to our Single Ventricle Program clinic do not replace the care provided by your pediatric cardiologist. You will continue to see your pediatric cardiologist as per his or her recommendations. We recommend returning to see us once a year or once every other year, depending on your child’s needs.

Why should I come to you if my child already sees a pediatric cardiologist?

Our program not only provides top heart care from a nationally recognized heart center, but we care for the rest of your child as well—physically, mentally, and emotionally. By promoting overall wellness and keeping track of your child’s health over time, we give your child the very best chance of avoiding heart failure and transplantation and living his or her most satisfying life.