Since its launch in 2001, Texas Children’s Pulmonary Hypertension (PH) service is the medical home for children, teens and young adults with pulmonary hypertension, a rare condition characterized by high blood pressure in the lungs.
Now, the nationally recognized program has earned a designation that reflects its incredible growth and success in providing truly comprehensive, multidisciplinary and life-changing care: the Texas Children’s Hospital Pulmonary Hypertension Center.
Like other centers at Texas Children’s, the PH program submitted an intensive application to the Board of Trustees and executive leaders to demonstrate that it deserved this distinction. The packet included letters of support from partners in Fetal Surgery, Lung Transplant Services, the Specialty Pharmacy, the Vascular Anomalies Center and the Pulmonary Hypertension Association. There was also a letter from a grateful parent about how profoundly the program and providers have impacted her daughter, who was diagnosed with PH at just 8 years old.
“There was a time I wasn’t sure [she] would start high school, but here we are in her freshman year. She plays clarinet, an instrument she has to use her lungs to work. … I now feel as though I can let myself dream of her future,” Jessica Johnson wrote. “The support we have received from the Pulmonary Hypertension team at Texas Children’s Hospital has been immeasurable. I’ll never be able to thank them for what they have given us.”
Committed to comprehensive care
After winning approval to become a center in December 2020, the PH team commemorated the milestone at a special, COVID-friendly ceremony in March.
“This is more than a renaming; it’s a recognition from the hospital of the work that we’re doing and the investments they’ve made into this program,” said Dr. Nidhy Varghese, who joined the PH team in 2011 and serves as director. “To be counted among our other recognized centers and to be among that illustrious group is an honor. It’s unbelievably inspiring, and we are grateful.”
One of the first and most significant investments came in 2015, when Texas Children’s approved the hiring of a nurse coordinator position that made it possible for the PH center to manage every aspect of our patients’ care. Any situation or need a child or family encountered on their journey could be assessed and addressed from the PH clinic on an inpatient or outpatient basis – whether it was a specialty drug, personalized diet or exercise routine, mental health support or financial resource.
A multi-talented team of experts
Today, the PH team includes two nurse coordinators, as well as pulmonologists, critical care intensivists, a cardiologist and nurse practitioner, social workers, exercise specialists, a dietitian and clinical pharmacy specialists. Each member brings an expertise and perspective that helps the program reach further and do more every day, Varghese said.
The team has mastered telemedicine during the COVID-19 pandemic, continuing to see PH patients and families who travel from across Texas, along the Gulf Coast and around the country to receive trusted care. Dedicated research projects are also scaling new heights.
“We didn’t do this work for the promise of today,” Varghese said, reflecting on how the PH program has steadily expanded into a recognized center and destination for so many patients and families seeking help for the complex condition.
“We did this work because Texas Children’s needed us,” she said. “Our patients needed us. And so we did the work and we are going to continue fulfilling that need. We’re going to continue to provide the best care possible for our patients. That’s the oath that we’ve taken as medical providers. And it’s the promise we’ve made to the PH community.”
