OHSU Doernbecher Children’s Hospital provides expert surgical care and advanced monitoring for babies born with only one pumping heart chamber (single ventricle heart disease).
Our single ventricle program includes:
- Oregon’s only fetal therapy program to plan for your newborn’s care.
- Pediatric heart surgeons who are experts at treating single ventricle defects.
- Remote electronic monitoring during the interstage period (between the first two surgeries), so you can safely care for your baby at home.
- Access to the latest research breakthroughs and advanced techniques.
- Care for the entire child, not just the heart.
- A family-centered approach that provides a support network for patients, parents and siblings.
- Oregon’s only Fontan clinic for older children with single ventricle disease.
What makes our program different
Our heart specialists are national leaders in caring for single ventricle heart disease. They work together and with you to address your child’s needs every step of the way, starting before birth.
Most single ventricle defects are found during routine prenatal ultrasounds. Prenatal diagnosis and monitoring help us know what to expect when your child is born. Together, we can create a detailed care plan.
- Close monitoring of growth and development in the first year. Our Fetal Link program ensures that you and your child receive all the services you need.
- Access to the latest research and the highest standards of care through the National Pediatric Cardiology Quality Improvement Collaborative. This national network of doctors, researchers and parents helps children with single ventricles live longer, healthier lives. We are the only member hospital between Seattle and San Francisco.
- Oregon and southwest Washington’s only comprehensive adult congenital heart disease program. Many babies with single ventricle heart disease now survive into adulthood. We work with the adult heart specialists at the OHSU Knight Cardiovascular Institute for a smooth transition.
- Our Fontan Clinic for school-age and older children is the only one of its kind in Oregon and one of the first in the nation. Your child will see many specialists all in one day.
- Expert palliative care through Doernbecher’s Bridges Program. Palliative specialists offer a range of services, including support for difficult decisions.
Our providers are among the best in the nation at treating complex ventricle defects in children. Your child’s care team may include:
- Specialists in children’s heart surgery, anesthesia, imaging, heart catheterization and critical care.
- A nurse who coordinates tests and treatments.
- Dietitians to help with your child’s nutritional needs.
- Child development experts.
- Physical and occupational therapists.
- Audiologists and speech-language pathologists to find and treat any developmental delays.
- Lung, liver and hormone specialists (pulmonologists, hepatologists and endocrinologists) for any digestion and growth issues.
- Evaluation for preschool and kindergarten readiness.
The latest techniques
Doernbecher offers advanced care for all types of single-ventricle defects. Many babies with these life-threatening conditions need critical care and surgery soon after birth.
Hypoplastic left heart syndrome is an example of a single ventricle defect that we treat. In babies with this condition, the left side of the heart does not fully form early in pregnancy. That means the baby’s heart has trouble pumping blood.
Babies with hypoplastic left heart syndrome often need a series of surgeries from infancy through early childhood. You will meet the surgeons before your baby is born to talk about options.
Our children’s heart surgeons are skilled at all three surgeries:
- Norwood procedure: This operation, done when the baby is about 1 week old, balances blood flow to the lungs and body. After the surgery, it’s important to monitor your baby’s oxygen levels, growth and well-being to make sure this balance is preserved.
- Glenn procedure: This surgery is done at about 4-6 months. Surgeons connect the big vessel that drains blood from the head and arms (superior vena cava) to the vessels that lead to both lungs (pulmonary arteries). This sends oxygen-poor blood to the lungs to pick up oxygen. Blood flow is more stable after this surgery, and babies usually gain weight normally.
- Fontan procedure: The final surgery is done when your child is 2 to 5 years old. Surgeons connect a large blood vessel in the lower body to the pulmonary artery. After surgery, all the oxygen-poor blood returns to the lungs as it should. The difference from a normally formed heart is the blood reaches the lungs passively instead of being pumped by the heart.
Interstage home monitoring
Doernbecher is the only hospital between Seattle and San Francisco to provide families with iPads, free of charge, for advanced remote monitoring. We give you the technology, support and confidence you need to safely monitor your baby at home between surgeries, instead of in the hospital.
Why is home monitoring important?
Reducing risk: Most babies with single ventricles need three surgeries to help their hearts work better. The risk of life-threatening complications is highest between the first and second surgeries (the interstage period) during your baby’s first few months of life. Checking your baby’s oxygen and weight regularly can help catch problems early to reduce risk.
Bonding: Home monitoring can help you bond with your baby in your usual setting during a critical time of care and development. We firmly believe that parents know their babies best and can provide the best care at home. Our role is to make sure your baby is safe during this time.
How home monitoring works
After your baby’s first surgery, your care team will talk with you about home monitoring.
- Once your baby is ready to go home after the first procedure, we will show you how to track your baby’s health and growth on an iPad.
- We’ll give you an infant scale to measure your baby’s weight.
- We’ll also give you a pulse oximeter to track your baby’s oxygen saturation levels and heart rate.
Automatic reports: You will record the results on an iPad app that automatically sends a report to your baby’s care team. The app will alert you and have you notify your team immediately if there is a problem.
Check-ins: If your baby is doing well, your nurse will call you weekly to check in. You can also call us any time with questions or concerns.
We bring a wide range of specialists together for school-age and older children after the final step in surgical care for single ventricle disease, the Fontan procedure. Core members of the team meet with you and your child in a half-day visit to make sure your child is thriving. Team members include:
- Pulmonologists (respiratory system doctors)
- Hepatologists (liver and gallbladder doctors)
- Exercise physiologists
- Social workers
- Endocrinologists (hormone system doctors) and hematologists (blood doctors)
Call 503-346-0640 to:
- Request an appointment.
- Seek a second opinion.
- Ask questions.
Refer a patient
- Refer your patient to OHSU Doernbecher.
- Call 503-346-0644 to seek provider-to-provider advice.
‘It’s a lifeline’
Learn more about our iPad app and monitoring system that helps babies with complex heart conditions heal at home between surgeries.