By Courtney Stewart
A team approach to treating pulmonary hypertension saved our twins, Mark and Isabella. Born at 23 weeks gestation, suffering from pulmonary hypertension and heart disease, and weighing less than two pounds, they were medevac’d from Atlanta to the Johns Hopkins Children’s Center (thank you, Air Compassion for Veterans!), in November 2012, when they were 5 months-old.
In Atlanta, my husband, Mark, and I had the distinct vibe of despair for our children. Even upon our arrival in the pediatric intensive care unit at Johns Hopkins, we experienced the other side of the coin. There was optimism, encouragement and a very disciplined, integrated approach to care for our little guys.
Pulmonary hypertension in preemies requires an incredibly high level of expertise and caution to manage properly. Before we transferred to Johns Hopkins, I Googled pediatric pulmonologist Michael Collaco, who together with pediatric cardiologist John Coulson would manage their care here. I saw that Dr. Collaco had written scholarly articles about pulmonary hypertension and its management in preemies at Johns Hopkins. I was sold.
I liked that care is very family-friendly at Johns Hopkins. Parents are included in the medical rounds. And bedside manner is terrific. Physicians, therapists, nurses all tell you what they’re doing and why, and they listen to you.
Gradually we saw our children improve. Every discipline – whether pulmonary, cardiology, social work or nursing – knew what was going on every step of the way. Isabella would eventually have a hole in her heart fixed in the pediatric cath lab at the hospital, and both were weaned from ventilators and medicines. Today they are happy, healthy toddlers, who like to dance and play and read. Their favorite book is “Chicka Chicka Boom Boom,” which we read to them in the hospital.
We are eternally grateful to Johns Hopkins and those who help support this place. Would the care and big advancements in care our twins so desperately needed have been here without research funding? What about the hospital’s research that showed an integrated approach is critical to saving preemies like ours? I don’t know where we would be today without the wonderful, talented people who make up the Johns Hopkins Children’s Center. Thank you!
Courtney, husband Mark and their family live in Maryland. Above: Courtney Stewart with twins Mark and Isabella in April 2014.