Joseph Hall: My Teen Son’s PH Diagnosis

“My son was diagnosed October 3, 2018, with pulmonary hypertension (PH). He was 14 years old. I had taken him to his pediatrician several times regarding high blood pressure, decreased activity tolerance and shortness of breath. He was an overweight child and was told he needed to exercise more. He experienced right upper quadrant pain after eating, so his acid reflux medication was increased. One day we were walking less than two blocks and his face turned gray. He rested and quickly returned pink. I called his physician to schedule an appointment. During the next couple of days, he was throwing up and had left-side numbness. I took him to the emergency room and he was sent home with a rhinovirus diagnosis.

“I received a call a couple of days later from the hospital reporting that he had an abnormal EKG. We scheduled a cardiology appointment. At the cardiologist appointment we had an echocardiogram done. He received a diagnosis of pulmonary hypertension. We were sent to a children’s hospital, where he also had a heart catherization. While there he was put on pulmonary hypertension medication. Was unable to complete the atrial septostomy due to enlargement or the right side of the heart. He went into cardiac arrest and was put on extracorporeal membrane oxygenation (ECMO), a pump that helps circulate blood through an artificial lung. An atrial septostomy was performed shortly thereafter. He again was failing, and the decision was made to put in a right ventricular assist device (RVAD). He was recovering after this surgery talking to me and was thought to begin rehabilitation for his heart and lungs, then things seemed to change. He unfortunately passed away on October 28 apparently from sepsis.

“The reason I am sharing this story is awareness. I want as many people I know to be aware of this diagnosis in honor of him. I had no idea of this diagnosis and the physician treating him said that it’s often not diagnosed until approximately 13 months after. He also said that the key is quick treatment. This is not a well-known diagnosis and needs to be more renown. My son is terribly missed and in honor of him I want to bring awareness to everyone in hopes that such a tragedy is decreased, and early detection and diagnosis is obtained so that treatment can begin early and hopefully a better outcome.”