ADAM SZCZESNY
MEETING THE PATIENT WHERE THEY ARE
10
Golisano Children’s Hospital
| 2019 — V3
Like many patients who receive treatment through the Complex Care Center, Adam Szczesny has fought through a rough and unpredictable journey. He was born with a condition called Deletion of Upper Arm Number Seven Chromosome. It’s caused by a missing copy of genetic material, and the severity of the condition varies. For Adam and his mother, Norann Shiner, the symptoms have been ever-evolving: aphasia, leukemia, severe osteoporosis, diabetes, bone deformities, and seizure disorders are a few of the issues he has faced and survived. “It’s hard to describe his condition because it’s just so much,” said Norann. For years, Adam and Norann shuffled through primary care doctors. Although Adam is non-verbal, he uses a device that verbalizes words for him and knows limited sign language. Yet many doctors “didn’t know what to do with a nonverbal kid with so many medical conditions,” according to Norann. In one initial meeting with a primary care specialist, the doctor said hello to his staff but not to Adam and
Norann. “Adam rocked his wheelchair as if to say ‘talk to me,’” said Norann. Eventually in 2017, Norann set up an appointment at the Complex Care Center. During their first appointment, the difference was immediate: “They talked to Adam first, and if he couldn’t help answer a question, then they would talk to me,” she said. This approach is by design, according to Heather Busick, M.D., assistant professor of clinical pediatrics and internal medicine and practitioner in the Complex Care Center. “This kind of care requires both time and the mindset to meet the patient where they are,” she said, “We make a conscious effort to move them to an adult model where they are more at the center of care; and the individual is empowered to participate to the best of their abilities.” Also critical is having a supportive caregiver who can help translate when communications do break down. “Norann is a spectacular interpreter for Adam,” said Busick. “She is a key aspect in his care.”
