Like many patients who receive treatment through the Complex Care Center, Adam Szeczesny 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 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 primarily 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 me,” she said.
This approach is by design, according to Heather Busick, MD, 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 says, “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,” says Busick, “she is a key aspect in his care.”
This connection has helped Complex Care doctors serve as lifelong advocates for Norann and Adam — they help with everything, from managing hospital visits to coordinating medication prescriptions at Adam’s group home in Greece. “When you’re admitted to the hospital you typically don’t see your primary doctor,” said Norann, “but the Complex Center handles your admissions, follows you to the hospital, and is with you every day.”
Norann visits Adam, 33, daily at his group home. Adam needs consistent attention: a recent surgery heightened his seizure risk, and the next seizure could fracture his spine in multiple places. Communication between caregivers and group home staff is critical for his safety. While Norann previously worked all weekend to coordinate his treatment with the group home, the Complex Care center has taken up this task.
Norann credits Busick, MD, Tiffany Pulcino, MD, and the dedication staff for their proactive work in coordinating care for Adam across all facets of his treatment plan. “Dr. Busick doesn’t just look at one thing, she looks at the whole.”
For Norann, the experience with her son inspired her to become an advocate for all people with disabilities. She now works as an advocate and trainer for Starbridge, a Rochester nonprofit that helps raise the quality of life for people with disabilities and their families.