This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it via the transcript that runs below.
I’m Aware That I’m Rare: Brian Hanna, MDCM
The phaware® interview (Episode 89)
Brian D. Hanna, MDCM, PhD, FAAP, FACC, is a board-certified cardiologist and director of the Section of Pulmonary Hypertension at Children’s Hospital of Philadelphia. Hanna also is medical director of Echo Hill Outdoor School, a special summer camp in Maryland designed for kids who have had, or are awaiting, heart and lung transplants.
My name is Brian Hanna. I run the Pulmonary Hypertension program at the Children’s Hospital of Philadelphia.
What is it about? What are we doing? We have this to deal, specifically, with children, and their lives; and their ability to cope; and their ability to move forward; their ability to take up the fight, or the standard, if you will, later in their lives, and to help.
We have seen some unbelievably courageous people get up and talk. It’s something that, at their age, I was not doing, and I still have difficulties with. However, most of these children are not this far from their parents at any one time in their life. That is not something that helps them understand independence, self-reliance, developing a philosophy of community.
So, we started a camp. It’s a sleep-away. We run it every year. Children with pulmonary hypertension, children who have had a lung transplant, or a heart transplant, or heart-lung transplant, come together with a phenomenal group of volunteers, physicians, nurse practitioners, nurses, child life therapy, psychologists. And, we play for six days, five nights. And we learn a lot about what is true, what is real.
As a physician, I see children in my office. I see them when they’re sick in my hospital. I also know what it’s like to try and catch one running down the hill, or to help them climb the tree. It’s a little bizarre, as a physician, to put somebody with a CADD® pump, a central line, and epoprostenol, into a harness and have them climb 90 feet to get to the top of a zip line. A little out of my comfort zone. But, that’s what we do.
We take everybody. My team, that works so much better in the hospital having seen what children should be able to do … I must say that there are some mothers who are a little upset with me, when they come back to clinic, because their kids are much more independent.
It can take four or five times for them to come before they truly have made that step into adolescence and early adulthood, to where they are taking charge and being part of the community for themselves and for other children.
The camp is run out of Echo Hill Outdoor School in the Chesapeake, in Maryland. It’s purely volunteer. It is purely done on the basis of donations. Anybody who is interested, I would love to take your money. Anybody who has children who are keen and enthusiastic … I’m not asking for mothers and fathers who are keen and enthusiastic. We do not let them in, and we take away the cell phones. (Echo Hill Outdoor School; it’s on the net.)
My name’s Brian Hanna, from Children’s Hospital of Philadelphia. And you can email me anytime.
EVERYBODY HAS A STORY. WHAT’S YOURS?
Phaware global association wants to share your pulmonary hypertension story with their engaged global audience. Whether you are a patient, caregiver, or medical professional, they are enlisting PH community members from around the world. Visit www.phawarepodcast.libsyn.com/contact to share your story and to be considered for a future episode. Never miss an episode with the phaware® podcast app. Learn more about pulmonary hypertension at www.phaware.global. #phaware
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