With the help of an advocacy program and integrated complex care team at Lucile Packard Children’s Hospital Stanford, Hari Suresh navigated an obstacle-strewn path to scholastic success.
September 22, 2017 - By Samantha Dorman
Hari Suresh, 20, of Fremont is embarking on his freshman year at UC-Davis, where classes begin today. Yet his journey to college was perhaps a longer, more complicated path than it was for most high school teens.
Suresh not only fought through years of illness and chronic pain but also to get the education he needed so he could go on to college. Luckily, he and his family found help through an advocacy program and integrated complex care team at Lucile Packard Children’s Hospital Stanford, to which he gives credit, along with his dutiful persistence, for making it possible to realize his goal.
Suresh first came to Packard Children’s during middle school in 2008 and was diagnosed with juvenile arthritis, which caused painful joint inflammation. During his junior year of high school, when most of his peers were gearing up to send out college applications, he was diagnosed with Crohn’s colitis, a chronic condition that causes inflammation in the walls of the digestive tract and large intestine. Painful flare-ups are often unpredictable, and symptoms include heavy cramping and frequent diarrhea.
Suresh’s gastroenterologist, William Berquist, MD, professor of pediatric gastroenterology at the School of Medicine, recalled, “I began seeing Hari over four years ago at a point which his symptoms were significant, his body had difficulty maintaining good nutritional status and he was also dealing with sleep issues.”
That was the beginning of a two-year interruption in his schooling, missing graduation with his class and missing the connection to friends and high school life. Suresh wondered whether his life would ever be “normal” again.
A straight-A student
Suresh had always excelled in school. He was a straight-A student who enjoyed scholastics.
“School had always been a huge part of my life, and to have that removed for that period was very distressing,” he said. “It was difficult to be cut off from my peers over that time. I felt isolated.”
During that time, Suresh found support in his care team in the Pediatric Pain Management Clinic at Packard Children’s. Here, Suresh went through the intensive pain program, which involved a month of seven- to eight-hour days of physical and occupational therapies and pain psychology that would help increase his endurance and get him back into school. At the clinic, he also encountered other young people who had chronic illnesses and similar experiences.
I’m most looking forward to being a college student, feeling like a normal kid.
“For the first time in a long time, I felt a sense of camaraderie with my peers,” Suresh said. “Like I was just ‘one of the guys,’ so to speak.”
Rashmi Bhandari, PhD, a pain psychologist in the clinic who has provided mental health support to Suresh and his family since the beginning of his complex medical journey, emphasized how chronic pain and illness can impact a young person’s ability to develop independence, confidence and social competence, and heighten psychological vulnerability.
“The natural reaction to pain is learning how to avoid it, and pain-avoidant behaviors lead to significant functional impairment,” said Bhandari, clinical associate professor of anesthesiology, perioperative and pain medicine at the School of Medicine.
Chronic pain and illness interfere with a child’s trajectory in school, often leading to frequent absences; difficulties with focus, performance and learning; and frequently feeling behind and stressed out. Bhandari described it as a vicious cycle that leads to social isolation and increased stress. What’s more, “stress and isolation exacerbate the experience of pain,” she said.
‘Challenge for the entire family’
“An interruption in a young person’s ‘normal’ academic and social life due to chronic medical illness presents a major challenge for the entire family,” said Jeanne Kane, MA, supervisor of Packard Children’s HEAL program. HEAL stands for Hospital Educational Advocacy Liaisons, and its mission is to enable families with medically fragile children experience success in learning despite limitations imposed by their medical condition.
“We know that life returning to ‘normal’ activities, like education, is critical for a child’s optimal adjustment,” said Kane. “And parents and children often face new obstacles when the child returns to school.”
One of those obstacles was securing educational accommodations from his school. His frequent absences for hospital stays, fatigue and stress, as well as memory issues associated with his medications, took a toll on his schoolwork. That is when Kane learned about the family, referred to her by Suresh’s care team, and stepped in to offer support.
A big part of HEAL’s function is educating students, parents and schools about the unique cognitive, social and emotional needs of medically fragile children in order to obtain appropriate school services. In Suresh’s case, his mother, Pannaga Parthasarathy, had exhausted her efforts as his advocate. “At a certain point, I didn’t know what else to ask for to help him in school,” she said.
Kane worked with the family and the school for three years, with much time dedicated to rigorously advocating the case for Suresh to receive educational accommodations based on his medical conditions.
When he received his acceptance to UC-Davis, the joy and accomplishment was a celebrated victory for everyone in his life as well as a sense of relief for his family, knowing that he wouldn’t be too far away.
“I feel so honored to work with him,” said Kane. “He fought so hard to get to where he is.”
According to Berquist, Suresh and his care team are finding success managing Suresh’s conditions with immunosuppressive treatment which requires IV infusions monthly. Suresh will be back to Stanford once a month to receive his infusions. His mom will be happy to see him, and says she’s getting advice from other moms with kids in college to “not be obsessive and show up at school all the time.”
As for Suresh, he said, “I’m most looking forward to being a college student, feeling like a normal kid, not feeling different, not being a patient — getting the chance to live my life.”
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