Parenting Children with Chronic Disease: Our Stories
We have each experienced different care journeys for different prognoses. Whether diagnosed as a newborn, toddler or young child, our daughters have life-threatening chronic conditions ranging from Congestive Heart Failure to Type 1 Diabetes to Eosinophilic Esophagitis (EoE). Parenting children with chronic diseases has motivated our access.mobile team, intensified our commitment and inspired our mission to facilitate the patient journey through technology, data and expertise.
At access.mobile, we didn’t all start in healthcare, but we are all in it now. Those who are parents understand the role is unlike any other; it is a different kind of advocacy and drive. For our kids, we research, agonize, plan, and never cease. We understand the importance of quality care, good providers and ongoing relationships. Parenting a child with a severe chronic illness provides deep and distinct insights into the health system. We see its flaws and pain points, and we are determined to improve the health system for our children.
access.mobile founder and CEO, Kaakpema "KP" Yelpaala, has a five-year old daughter named Eliana with over a dozen anaphylactic food allergies and EoE. As a baby, she never slept well, vomited her first foods, refused solids and was officially diagnosed by esophageal biopsies when she was 1.5 years old. The family removed foods from her diet until she was only allowed an amino acid based medical formula, white cane sugar and water. Currently, Eliana has only one known safe food – white potato – that she can eat along with her medical formula and “elemental” ingredients.
“Eliana has a complicated case of EoE and there is no clear course of management. We are fortunate to have a great team of providers and we check in regularly to adjust her medications and diet. As her symptoms are always shifting, communications are really at the core of her care. Simplifying our provider communications can greatly improve her care and health.” – KP Yelpaala
Eliana is often sick or in pain, has regular medical procedures and visits, and takes several medications along with her medical formula. Her condition means restructuring meals (birthdays, holidays, and playdates); carrying medicine, formula, and safe foods everywhere; and knowing the surroundings for food dangers, bathrooms and doctors. KP and his wife are in weekly contact by phone, email, portal, or in person with someone from her integrated team of providers including a Gastroenterologist, an Allergist, a Nutritionist, a Feeding Therapist and a Therapist. With no fixed path to manage EoE, an atypically severe case, and a large care team, provider engagement enables the providers and the family to work together to make timely improvements to Eliana’s treatment, diet and health.
KP’s experience is not unique however, each of our executive staff at access.mobile has a daughter with a severe chronic disease. As parents, we are in and out of appointments and procedures, advocating with providers and insurance agencies, and continually tracking changes in symptoms, technologies and standards. We are all too familiar with parenting sick children.
access.mobile Chief Operating Officer John Ripley has a twelve-year-old daughter named Kennedy with congestive heart failure. Kennedy developed a hemangioma, a raised tumor of blood vessels, shortly after she was born and was diagnosed with life threatening congestive heart failure before her first birthday. For the first several years of her life, Kennedy’s unstable heart condition caused multiple ancillary health conditions, resulting in many hospitalizations, surgeries, procedures, scans, and tests.
“Our family has been greatly impacted, it has been a difficult journey. We lived in the hospital for the first few years and spent our time researching and working to improve Kennedy’s health. As she grows, we encounter new issues. We are always seeking new advances and tools to support her health and our medical journey.” – John Ripley
Kennedy will require treatment for the rest of her life. With vascular malformation and congestive heart failure, her medical needs change as she grows. Kennedy and her family continue to work to find new treatments, technologies, and tools to improve her health.
Ruben Maciel, VP of Business Development, has an eleven-year-old daughter named Sofia. Sofia was diagnosed with Type 1 Diabetes at six years of age when virus symptoms persisted and a number of tests were conducted. Type 1 Diabetes is a disease that needs to be managed all day, every day. The whole family is involved in the management of the disease as they watch and control Sofia’s insulin, count carbs, and adjust eating and physical activity. It means interrupted sleep and little rest as her blood sugar needs to be checked three or four times a night.
“Having a child with a chronic disease is a different kind of parenting and responsibility. For me, the initial phase after her diagnosis was extremely difficult. Parents can greatly benefit from more tools to help them understand the disease and its management. Mobile communication can help parents feel more comfortable and provide much needed clarity through education and support.” – Ruben Maciel
Managing Sofia’s Diabetes requires Sofia, her parents, her school and her care team to work together. Her blood sugar monitor sends mobile notifications to her parents and the school nurse who communicate over text to administer insulin as needed. Her monitor can also be accessed by her care team for tracking. Even though Sofia’s mother has the same disease and is a Diabetes educator, it took a long time for the family to adjust to the diagnosis and new normal. The learning curve for Diabetes was steep and difficult, even with a huge system of support and many tools.
We each feel fortunate to be able to access quality care and to navigate the health system. What if we were not as active, informed or able to drive the care? Having access to providers and care that work closely with our children is challenging for us, but we recognize that we have ideal scenarios compared to many who experience far greater barriers.
Engagement is critical and impacts our children’s quality of care. We have to communicate with providers regularly to support medication compliance, inform providers of new symptoms or changes, understand new services and opportunities, and get guidance and forms for insurance, school and activities. Engagement is at the core of our children’s care.
We know how engagement has impacted our care, but we are not alone. Engagement has been found to increase patient activation, medication compliance, and satisfaction. Less activated patients are three times more likely to have unmet medical needs and twice as likely to delay care compared with more activated patients (Hibbard). Those who are better engaged in healthcare processes are more likely to maintain their health and make better lifestyle choices, reducing additional healthcare costs.
Engagement also enables the shift in healthcare models from primarily provider-driven and reactive to patient-driven, or even person-centered, and proactive. This fundamental paradigm shift allows for more continuous, information-based care to maintain health. However, many engagement platforms are still provider driven and reactive rather than designed to meet patients’ varied needs and preferences. At access.mobile, we hope to change that with a person-centered engagement platform for diverse needs and populations.
Each of our different care journeys inform our approach, our technology and our work at access.mobile. Our daughters’ health needs, like any individual, are intrinsically tied to yet go far beyond their diseases, age, and ethnicity. As parents, we value and center their needs and preferences. They are more than patients; these are our daughters.