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Sibley’s Multi-Disciplinary Program Ensures Coordinated Management of Pulmonary Hypertension

Pulmonary hypertension is a disorder of the arteries in the lungs that results in elevated blood pressure in the lungs and strain on the heart. Sometimes, pulmonary hypertension has no known cause, but it occurs more frequently as a consequence of another disease, such as congenital heart disease, or it can be associated with prematurity in babies.

Pulmonary hypertension, while relatively rare, can be complicated to manage and treat, and it tends to be a much more serious condition than high blood pressure in the body. Because it affects both the heart and lungs, Sibley offers a team approach that combines the expertise of cardiologists, pulmonologists and dedicated nurse practitioners along with social workers and researchers.

At Sibley, we have clinical inpatient and outpatient components of the program,” said Usama Kanaan, MD, Director of the Pulmonary Hypertension Program at Children’s Healthcare of Atlanta. “We have a weekly outpatient clinic staffed by a cardiologist, pulmonologist and pediatric nurse practitioner and an inpatient component in which we consult on patients in the hospital. About 40 percent of the clinic population is premature babies.”

How curable and treatable pulmonary hypertension is depends on the type. The majority of babies whose pulmonary hypertension is associated with prematurity will outgrow the disease. Other forms tend not to resolve, and in these cases, pulmonary hypertension is a chronic, progressive disease that can eventually lead to the need for lung transplants.

Pulmonary hypertension is often the turf of heart or lung specialists, which requires a family to see sub-specialties separately and cross their fingers that communication between them is good.

“Sibley’s main distinction is that we take a team approach,” Dr. Kanaan said. “Patients see both specialties at every appointment. Having us all in the room together is critical and improves communication and collaboration of care. Our program also has a dedicated team of nurse practitioners who provide continuity for our families and hold the program together.”

Sibley offers support to families trying to get insurance to cover the complex medication regimens and most advanced therapies that are prescribed by doctors.

“Without the support of our administrative team, social workers and nurse practitioners, it would be very hard to win the frequent battles we face against insurance companies,” Dr. Kanaan said. “It’s not an easy road, but we have been successful in getting services for our patients, including surgical interventions and lung transplants. We fight every day to get our patients the care they need and deserve.”

Check out these resources to learn more about pulmonary hypertension:

Children’s Healthcare of Atlanta Pulmonary Hypertension program

Pulmonary Hypertension Association

A patient story of a child with pulmonary hypertension

Symptoms and signs of pulmonary hypertension may include:

  • Difficulty breathing
  • Dizziness
  • Fatigue
  • Fainting
  • Chest pain

For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.

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