"I am glad I came here because I got to meet amazing staff and other girls with Type 1 Diabetes my age, which is something I really needed.”
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Emma Soto-Ortega will never forget February 12, 2016. It was the day she received the life-changing news that she was diagnosed with Type 1 Diabetes. Type 1 Diabetes is a chronic condition that occurs when the pancreas doesn't produce enough insulin or any at all. Insulin is essential because it enables glucose to enter the cells, thus regulating blood sugar levels. Without it, the glucose remains in the bloodstream, leading to high blood sugar levels. Now sixteen years old, Emma shared, "When I first found out, it was scary because I was only nine. I was still playing with dolls, and hearing about this was very hard for me." As Emma grew older, she became less responsive to her diabetes treatments, and she needed more help managing her condition. She shared, "I didn't ask for help when I needed it, which caused many hospitalizations for me, and it got really rough." In May 2023, Emma was admitted to Children's Specialized Hospital’s (CSH) Chronic Illness Management Program (CIMP) in their inpatient hospital in New Brunswick, as recommended by an endocrinologist.
During Emma's four-week stay at CSH, she worked closely with a team of CIMP specialists. This team included occupational therapists, physical therapists, recreational therapists, registered dietitians and certified diabetes care and education specialists, and psychologists. At first, she felt hesitant, but as she became more familiar with the hospital, its staff, and her peers, she grew more comfortable.
Emma’s Inpatient Experience
Emma started occupational therapy to establish healthy daily routines. "We focused a lot on maintaining safety when spending time with peers and how to maintain balance after school to avoid burnout. We also worked on sleep hygiene for overall health benefits, specifically how it related to her diabetes. Emma always showed up to her occupational therapy sessions on time and was very engaged in her sessions," shared her Occupational Therapist Jocelyn Dulanie. "She would try almost anything I asked her to, and we were able to find strategies that worked for her and eliminate strategies that didn't! She is a very typical teenager and enjoyed her time with her peers. Still, she especially enjoyed being a positive role model for the younger children both in the CIMP and other programs. I wish Emma all the best, and I am confident she can carry over what she learned after graduating from the program." Emma connected most with Jocelyn, as she found her down-to-earth and easy to talk to.
Emma achieved remarkable progress during her physical therapy sessions by setting goals and pushing herself to her limits. She even surpassed her previous gym records, which inspired her peers to strive for their goals as well. With dedication and perseverance, Emma completed 100 pushups, squats, and sit-ups in one session alongside her best friend in the program. Her Physical Therapist, Cassy Craig, shared, "One of the things I noticed right away while working with Emma is that even though she was unsure of how CSH would be, she was very motivated to be on time, prepared, and open-minded about what we had to offer. I do have high hopes for Emma. I think she has everything in place she can utilize to improve."
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Emma participated in various recreational therapies, including swimming, gardening, outdoor walks, communication groups, lunch outings, gym visits, team games, and special events. “Emma came into the CIMP ready to learn. She asked important questions and was an active participant in her plan of care. She was always positive and was a role model to the younger children in her program and at the hospital. It was a pleasure watching Emma learn and grow throughout her four weeks at CSH,” shared Recreational Therapist Caitlyn Poss.
Emma learned a lot about nutrition by discovering new recipes, strengthening her carbohydrate counting skills, and effectively managing her blood sugar levels through meal choices. She enjoyed cooking healthy meals with her peers, which provided a fun and engaging way to learn new skills and spend time with her friends in the program. “During her stay, Emma worked incredibly hard during her therapies and education sessions. Specifically, in nutrition sessions, Emma learned about a variety of topics, which encompassed general healthy eating, such as increasing fiber intake, to more specific diabetes-related nutrition education, such as carbohydrate counting, portion sizes, and identifying short- and long-acting carbohydrates,“ shared Registered Dietitian Laura Gimenez. “Emma was able to not only lower her hgb a1c by 2.2% in less than one month, but also lower her triglycerides, total cholesterol, LDL cholesterol while boosting her HDL cholesterol to all within a normal range.” Using the skills she’s learned in the program, Emma still makes her favorite meal, quesadillas.
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Emma also worked with Kate Hottinger, CIMP Psychologist, to discuss challenges and work through a diabetes diagnosis. “Emma engaged in individual therapy and group therapy support throughout her program. She was engaged in learning and utilizing coping strategies and addressing factors related to motivation to manage her diabetes,” Kate shared. Kate believes that integrating a psychological component into treatment can assist patients in overcoming mental barriers and enhance their quality of life.
Keeping an Open-Mind
Emma reflected on her time in the CIMP, acknowledging how much she has learned and how open she is to learning more. "Even if you're confident you'll get better yourself, it's always good to have that extra help, and who knows, maybe you'll learn something along the way. I learned you can't shower until an hour and a half after taking insulin. I knew I could not shower but thought it was only for 30 minutes. It honestly opened up my mind."
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One of the most significant takeaways from the program is the relationships she's built. The program allowed her to meet girls her age going through similar situations, creating a bond between them. "I am glad I came here because I got to meet amazing staff and other girls with Type 1 Diabetes my age, which is something I really needed. I felt like no one else was going through the same thing as I was," Emma shared. When she first arrived at CSH, she felt isolated, like diabetes was the only thing defining her life. But after her stay, she left with a newfound sense of belonging in a welcoming community.
Life Outside of CSH
After leaving the hospital, she has managed her diabetes successfully by adopting healthier habits such as sleep management, eating well, and time management. She has enjoyed painting, drawing, writing poetry, and the outdoors. Although she is happy to be back home, she still appreciates the program and keeps in touch with the friends she made at CSH. She recommends the program to others in similar situations because it helps connect people who share the same struggles and lets them know they are not alone.
For more information, visit Children's Specialized Hospital.