Pediatric pulmonary hypertension: Getting your child back on beat

Children who have pulmonary hypertension benefit when a team of experts works together to provide their care. That’s what we offer through the UW Health Kids Pulmonary Hypertension Clinic.

We diagnose, treat and manage your child’s condition — and are a resource for parents, too. Our goal is to help your child live as fully as possible, with a good quality of life.

Pulmonary hypertension refers to high blood pressure in the lungs. Narrowed or damaged blood vessels in the lungs make it hard for blood to get through. This forces the heart to work harder and can lead to heart failure.

Sometimes pulmonary hypertension runs in families or is linked to another health problem. Other times the cause is unknown. We work to figure out what’s behind the condition and help you and your child take control of it.

Diagnosis

Children with pulmonary hypertension often feel short of breath or tire easily when they’re active. Many have a cough. These symptoms can be mistaken for asthma or other conditions. Kids also might experience fainting, chest pain, poor growth or swelling of the feet and ankles.

At our clinic, we use many tests to assess symptoms and make a diagnosis. Common tests include:

• Abdominal ultrasound

• Blood tests

• Chest X-ray

• Diagnostic cardiac catheterization | Watch video

• Echocardiogram | Watch video

• Electrocardiogram (EKG) | Watch video

• Exercise stress test | Watch video

• Lung CT scan

• Reflux study

• Sleep study

• Swallow study

• Ventilation/perfusion scan

Treatment

If we can identify a cause, treatment focuses on the problem contributing to pulmonary hypertension. That might be surgery to correct a heart defect, or treatment for lung disease or sleep apnea. Our team works together to find the treatment that’s best for you.

If there’s no known medical cause for your child’s condition, there are medications that can help. There is no cure in many cases. However, we can help lessen symptoms and make your child’s life better. As your child gets older, we also offer complete care for adults.

Research 

There’s a lot about pulmonary hypertension that we still don’t know. Our team is working to change that.

Through several special labs and research groups, UW Health Kids doctors are studying pulmonary hypertension in kids. They’re working to better understand the disease and find new ways to treat it. We offer help to those dealing with pulmonary hypertension today. But we also offer hope that we’ll be better able to treat it in the future.

Pulmonary hypertension is a rare condition. But UW Health Kids providers regularly work with kids who have the disease. They include specialists in pulmonology and sleep medicine, neonatology and cardiovascular medicine. They make sure your child always receives the highest level of care.

Our UW Health Kids Pulmonary Hypertension Clinic is at American Family Children’s Hospital in Madison, Wis.

The Pulmonary Hypertension Association provides resources and information about living with pulmonary hypertension. These resources can help you when caring for a child with the disease, and children themselves as they get older.