Our Journeys

A PH Nurse Story

Shiela Bostelman, RN, MSN, CPNP, CCTC

Shiela BostelmanMedical professionals share a commitment to the patient which, together with clinical skill, significantly benefits those under their care. This is particularly important in the field of pediatrics, where the patient-professional interaction extends to the entire family. Shiela Bostelman at Children’s National Medical Center in Washington, D.C., has experience caring for young PH patients and knows how to build relationships with both patient and parent.

Shiela started out as a nurse in the cardiology unit at Children’s National in 1993. Over the next five years, she occasionally found herself caring for children with PH. “It was a difficult assignment,” she recalls. “During that time, pediatric PH patients had a very poor outlook, with survival in months rather than years.” Flolan® was developed during her term at Children’s, but at the time, it was only being tested on adults. Shiela left Children’s National in 1998 to work at other hospitals in Florida and Maryland.

In 2007, Shiela received an invitation to return to Children’s National as a nurse practitioner and work with Dr. John Berger to care for pediatric PH patients. She recalls her initial reluctance giving way to excitement: “My encounters with PH a decade earlier were less than encouraging, but I soon learned about the many advances in PH treatment over the past ten years.” She took the job.

“Now in my second year back at Children’s National, I work closely with Dr. Berger and others to treat a wide variety of PH cases,” Shiela says. “Congenital heart defects are the cause of a majority of the PH diagnoses, though we see everything from idiopathic PH to PH associated with Down’s syndrome and scleroderma.” In addition to making rounds with Dr. Berger twice a week, the nature of her work requires tying in with several departments, including neonatal intensive care, cardiac intensive care and heart and kidney unit staff. When treating PH, “collaboration with the whole team is the goal,” Shiela emphasizes.

Interacting with children demands a very different approach than working with adults, and Shiela delights in the challenge. A pediatric patient can be an infant, an adolescent, or anyone in between, and Shiela stresses the need to understand the patient’s level of physical and mental development. “You have to be able to relate to whatever stage they’re in,” Shiela says. She lets young children draw pictures or play with her stethoscope, observing the child’s responses in the process. Tickling and playing with a toddler, for example, allows a child to become comfortable with her and reveals useful information such as palm flushing, fingernail clubbing and shortness of breath. Likewise, getting an adolescent to open up to Shiela requires building rapport with the patient, and a knowledge of teenage slang can be crucial for this step.

Beyond clinic duties, Shiela spends much of her time helping patients, parents and medical professionals learn the ins and outs of managing PH. For school-age kids, she helps parents “educate teachers about the infusion pump, write notes to teachers asking permission to carry water in class and give warnings about staying hydrated, address physical exercise demands and be careful in the heat.” As medical issues arise, such as a routine checkup with the primary physician or a tooth needing to be pulled, Shiela makes sure everyone involved is aware of any special considerations when treating a PH patient.

For further education, and to give patients and families the chance to connect with others, Shiela turns to PHA. “We hook everyone up with PHA right away,” she says. “We get on a computer in the clinic and show what’s available on the website, or we tell parents to go to a nearby library and visit the site and write down any questions they have. By the end of the day, they’re calling or emailing and thanking us.”

Shiela believes that the greatest benefit of her work in PH is the personal growth that her own patients have helped her achieve. “It blows me away. I get paid to play with kids every day, and I love it,” she says. “These kids have given so much back to me. I see so much more hopefulness in these patients that I never saw as a cardiology staff nurse.”

Her parting advice: “Don’t lose that hope.”

Updated Winter, 2010 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.