Single Ventricle Program

Our home monitoring process is designed to find and prevent problems in fragile babies at home between their first and second heart surgeries. We have learned that a simple daily check can help us find important problems early. Each day you will need to weigh your baby on a baby scale and measure the oxygen in the blood using a Band-Aid like device. You will write the weight and oxygen level in a notebook. You are asked to call your cardiologist if your baby does not reach the goals for weight gain and oxygen levels. We will teach you when to be worried and when to call.

You and anyone who cares for your baby will learn cardiopulmonary resuscitation, better known as CPR. You will be given a CPR kit with a doll and a DVD from the American Heart Association which is yours to keep. You will take it home and we ask you to share it with other family members and caregivers.

Good nutrition is a very important part of helping your baby to do well after surgery. A group of specially trained staff (nurses, dietitian and speech therapist) will work with you to get your baby to grow and eat before going home from the hospital.

Many babies with single ventricles have trouble eating all their food by mouth. If this is true for your baby, you will learn about feeding your baby with a tube that goes through the nose (a nasogastric or NG tube) or directly into the stomach (a gastrostomy tube or GT). Tube feeding may be the best method of providing your baby a healthy diet for the best growth and development.

If you would like to breastfeed, we want to support you. Breast milk provides many benefits for your baby. Our lactation and feeding teams are here to help. Breastfeeding may not be possible right after surgery. We still prefer your baby to have breast milk, if possible. You can pump the milk and we can give it to your baby. We may need to add extra calories to the milk to help your baby grow. We may need to put your milk through a tube to help your baby eat. We will make every effort to help you and your baby to breastfeed, but this may take some time.

To be sure you are comfortable caring for your baby at home, we will ask you to spend at least a full day and night caring for your baby before you leave the hospital. Your baby will not be discharged home before you feel comfortable at performing the following tasks on your own:

• Give all the medicines your baby will take at home
• Feed your baby using whatever equipment is needed
• Practice all the skills you will need to care for your baby (weighing your baby and measuring the oxygen level, for example)

You will need to plan ahead for time off from work or for childcare for other children while you stay at the hospital. If you are at the hospital a lot, set a goal to learn one thing about caring for your baby every day. This will make rooming in easier.

Once you and your baby go home, your baby will be seen in our multidisciplinary, interstage single ventricle clinic. Each clinic visit includes a cardiology visit with one of our single ventricle cardiologists along with our outpatient nutritionist and speech therapist. This helps to make sure your baby continues to grow and progress from the first surgery to the second surgery. The clinic is located at the Inova Children's Cardiology - Fairfax outpatient office.

We participate in the National Pediatric Cardiac Quality Improvement Collaborative (NPC-QIC). This a national, multicenter quality improvement collaborative aimed at improving outcomes in children with hypoplastic left heart syndrome and other single ventricle heart defects. The collaborative also involves a data registry, which is used to collect important clinical data on children with single ventricle heart conditions. You will be provided more information about this, and enrolling your children in the registry is voluntary.