When Fireflies Meet Oxygen Tanks: Understanding and Supporting Medically Complex Childhoods
BY , RN, BSN, BSW, CCM, CMSRN AND , LCSW
Claire is a typically developing seven-year-old who spends her summer evenings chasing fireflies and carefully collecting them in a glass jar. Her days are filled with swimming in the lake, timing how long she can hold her breath underwater, and exploring the densely wooded forest behind her home. During the school year, Claire enjoys recess, art class, and eating lunch in the cafeteria with her peers. She participates in an after-school program while her parents are at work and eagerly awaits pickup time, when she can share stories about her day. Each evening, she practices her reading skills with her mother while snuggling her favorite stuffed bear. The glass jar on her nightstand glows intermittently with the soft, neon-green light of her treasured fireflies—illuminating her room as she drifts to sleep.
Chloe is also seven years old; however, her daily experiences are shaped by significant medical complexity. Her mobility and participation are constrained by dependence on portable oxygen tanks and a ventilator, which limit travel due to their weight, size, and restricted battery life. Her family recently relocated closer to the city to ensure timely access to specialized pediatric medical care. Vacationing at their lakeside camp has become impractical and unsafe because of limited emergency resources and the distance from tertiary medical facilities. Consequently, the family’s decisions regarding housing, recreation, and travel are all influenced by Chloe’s health status and the availability of appropriate medical support.
Unlike Claire, Chloe cannot safely swim or play freely outdoors. Her tracheostomy—her primary airway—poses a substantial risk if exposed to water. Additionally, her wheelchair limits her access to uneven natural terrain, where raised roots and rough ground restrict her movement and reduce opportunities for spontaneous outdoor exploration.
Within the school environment, Chloe receives nutrition via a gastrostomy tube due to a high risk of aspiration with oral feeding. Consuming food by mouth could result in airway obstruction, aspiration pneumonia, or prolonged hospitalization. She is supported by a dedicated one-to-one nurse or caregiver who administers medications, monitors respiratory function, and assists with toileting and hygiene needs. Her school attendance is frequently interrupted by medical appointments or inpatient admissions, leading to inconsistent academic participation and limited social interaction with her peers.
At night, Chloe sleeps in a medical bed surrounded by monitors that track oxygen saturation, heart rate, and ventilator function—devices that provide safety and reassurance while simultaneously reinforcing the ever-present medicalization of her daily life. The green glow of these monitors replaces the gentle flicker of fireflies, offering both light and a quiet reminder of the complexities that define her childhood.
Introduction
Parenting is both profoundly rewarding and deeply demanding. It is filled with joy and wonder, but also with persistent concerns, requiring the organizational skills of a seasoned coordinator to keep daily life running smoothly. For many families, calendars overflow with sports practices, games, school events, and playdates. Yet for parents of medically complex children, these everyday responsibilities are compounded by an additional layer of medical management—one that can be overwhelming, isolating, and completely exhausting.
According to the American Academy of Pediatrics, children with medical complexity are those with chronic medical or behavioral conditions that affect two or more body systems and necessitate intensive, ongoing health care services. These children frequently experience severe chronic conditions, significant functional limitations, and high utilization of health resources. Some examples of medical complexity are a child with cerebral palsy, congenital conditions or genetic disorders, epilepsy, gastrostomy feeding, scoliosis, spasticity, and chronic respiratory insufficiency. Many may depend on artificial respiratory support, such as mechanical ventilation, or require enteral feeding through a gastrostomy tube, or may need special therapy services or mobilization equipment. Due to their medical complexity, they face higher rates of unplanned hospital readmissions, increased mortality risk, greater illness severity, prolonged hospitalizations, and involvement from multiple interdisciplinary care teams—often within a fragmented and inconsistent health care system (Critical Care Nurse, Vol. 40, No. 5, October 2020).
Over time, parents of medically complex children develop deep experiential expertise in their child’s care. They become essential partners in the health care process, offering nuanced insights that inform and enhance clinical decision-making. Beyond their role as caregivers, these parents often serve as informal case managers, medical historians, and advocates, ensuring continuity and coordination across a fragmented system. Their resilience and vigilance are extraordinary—driven by an unwavering commitment to their child’s comfort, safety, and well-being at all hours of the day and night.
One tool that can help capture the scope of these responsibilities is care mapping. A care map visually represents the network of supports, services, and considerations involved in a child’s daily life. The child and family are placed at the center, with surrounding “spokes” depicting medical providers, therapies, educational supports, and community resources. Comparing the care map of a typically developing child-like Claire to that of a medically complex child such as Chloe reveals striking contrasts. While both maps share similar broad categories—such as family, health, and recreation—Chloe’s map contains far greater complexity, illustrating the intensive coordination required to sustain her health and participation in daily life.
Four Needs of Medically Complex Children and Their Families
1. HEALTH CARE COORDINATION—KEEPING IT ALL STRAIGHT
Children with complex medical needs require care and attention from multiple providers and services. Their routines often include numerous follow-up appointments, complex medication schedules, and ongoing management of durable medical equipment (DME). This equipment must be ordered, delivered, and regularly serviced. As children grow, equipment needs frequently change—what begins as a medical stroller in early childhood may later transition to a customized wheelchair that accommodates new mobility and developmental needs.
According to the study “Hospitalizations by Children with Medical Complexity From 2009 to 2022” (American Academy of Pediatrics, Vol. 156, Issue 2, August 2025), medically complex children account for increasing proportions of hospitalizations, hospital days, in-hospital deaths, and overall healthcare costs. Effective case management—including assessment, planning, facilitation, coordination, evaluation, and advocacy—is therefore essential.
Frequent and prolonged hospital stays provide valuable opportunities for families to receive support from inpatient case managers. These professionals coordinate referrals for skilled nursing and therapy services, arrange for necessary medical equipment, and ensure orders are properly written by the medical team. They also manage the delivery and education surrounding the use of equipment, facilitate interdisciplinary team meetings, and ensure closed-loop communication. Equally important, they help families build confidence in the discharge plan and monitor progress toward discharge goals. The involvement of a discharge coordinator has been shown to improve health outcomes, promote continuity of care, decrease hospital length of stay, and increase family preparedness for transitioning home. One study demonstrated that enrollment in a hospital care management program was associated with decreased medical costs, as well as fewer primary care visits, emergency room visits, and hospital readmissions (Pediatrics, Vol. 152, Issue 6, December 2023).
Once a patient is ready for discharge, efforts are made to transition care to an outpatient case manager whenever possible. Evidence consistently shows that case management is associated with greater adherence to treatment guidelines and higher patient satisfaction, though not necessarily with longer survival or more efficient use of hospital resources (Primary Health Care Research & Development, 2020, 21:e26). However, outpatient case managers are often scarce and face heavy caseloads. When an outpatient case manager is unavailable, families are frequently left to assume this role themselves—an overwhelming task for caregivers already managing the extensive needs of a medically complex child.
2. FAMILY MATTERS—KEEPING THEM ALL TOGETHER
At the center of every child’s life is their family. When assessing and providing services for a child with medical complexity, it is essential to closely examine the family unit and its dynamics. Family connections often provide a sense of meaning and purpose, as well as social and tangible resources that contribute to overall well-being (Hartwell & Benson, 2007; Kawachi & Berkman, 2001) and play a pivotal role in the life of a child with medical complexity.
According to Ann Gold Buscho (2023), approximately 22% of American households have a child with special health care needs, and the divorce rate among these families is as high as 87%. The time required to care for a medically complex child, coupled with financial strain and limited time to nurture the marital relationship, places significant stress on families. Parents often find it difficult to leave their child in the care of a babysitter or even trusted family members, as the child’s needs may require specialized training that others lack. Over time, parents become the primary experts in their child’s medical care and may be reluctant to trust others with complex routines, medication schedules, or medical equipment. As a result, opportunities for rest or time together as a couple are often overshadowed by anxiety, “what if” scenarios, and the inability to nurture intimacy and connectedness.
During prolonged hospitalizations or intensive treatment periods, siblings of medically complex children can feel overlooked or forgotten. The constant attention, planning, and conversations focused on the unwell child may interfere with siblings’ ability to have their own needs met, leading to feelings of sadness, jealousy, anger, or guilt. Some children may even feel responsible for their sibling’s illness—a reflection of the egocentric thinking typical of childhood development. Siblings may also exhibit developmental regression, behavioral issues, academic difficulties, social withdrawal, or increased clinginess.
Many hospitals employ child life specialists who help children process their emotions and experiences during these challenging times. Siblings can also benefit from being included, when appropriate, in their brother’s or sister’s care. This involvement offers a sense of contribution and helps normalize the situation. It is equally important that siblings are encouraged to ask questions and receive developmentally appropriate explanations. Collaboration with schools can also ensure that teachers and counselors are aware of the family’s situation and can offer additional support. Finally, creating opportunities for one-on-one time between parents and siblings—dedicated to play, relaxation, and undivided attention—is essential for emotional well-being and resilience.
3. EDUCATIONAL SUPPORT—ACCESS AND INCLUSION
School attendance represents a critical developmental milestone, fostering both cognitive growth and social engagement in children. All students are entitled to an education in the least restrictive environment, and this principle extends to children with complex medical needs. Educational plans for medically complex students are developed through an individualized process that considers the child’s unique medical, developmental, and educational requirements, as well as the resources available within the school setting. Instructional days may be modified or abbreviated to accommodate physical limitations, fatigue, and ongoing medical interventions. These students require the support of a one-to-one nurse or aide to monitor health status and provide care for needs such as enteral feeding, incontinence management, and mobility assistance.
School personnel must receive thorough training on each student’s individualized healthcare plan, including the proper operation of any specialized medical or adaptive equipment. Team meetings are held to develop and review the student’s Individualized Education Program (IEP) or 504 Plan, in alignment with the Americans with Disabilities Act (ADA). Continuous collaboration among educators, healthcare providers, and families is essential to ensure that the student’s complex needs are effectively supported, promoting both educational access and inclusion.
4. FINANCIAL SUPPORT—BALANCING CARE AND COST
One of the most immediate financial challenges is the cost of healthcare. Even with insurance, families often face high out-of-pocket costs, including copayments, deductibles, and uncovered procedures or medications. In many cases, families must also pay for transportation to distant medical centers or specialty clinics, adding both financial and logistical strain.
Additionally, many medically complex children require durable medical equipment (DME), such as wheelchairs, feeding pumps, oxygen tanks, or adaptive beds. These items are often expensive, require frequent maintenance or replacement, and may not always be fully covered by insurance. In addition, families often need to modify their homes to accommodate their child’s needs, such as installing ramps, widened doorways, accessible bathrooms, or Hoyer lifts. These modifications can cost thousands of dollars and are not usually fully reimbursed.
Caring for a medically complex child often requires a parent to reduce work hours, take unpaid leave, or even leave the workforce entirely. The need for constant supervision, hospital visits, and home care can make traditional full-time employment nearly impossible. This reduction in income, combined with high medical expenses, places families in a precarious financial situation.
Research highlights the significant financial impact on families. In a national sample of families of children with medical complexity, 46% reported spending more than $1,000 out-of-pocket for medical costs per year, and 54% reported that a family member stopped working as a result of their child’s health needs (J Pediatr. 2016 Feb 17;172:187–193). These statistics underscore the dual burden of high medical costs and lost income, which can strain household budgets and limit access to other essential resources.
Insurance coverage, while essential, is often complex and inconsistent. Navigating the bureaucracy of claims, prior authorizations, and appeals can be time-consuming and stressful. Families may encounter denials for necessary care, delays in coverage, or limited access to specialized providers. Private insurance may offer broader coverage but at higher premiums, while public programs such as Medicaid may limit provider options or have lengthy approval processes.
Beyond medical bills and equipment, families face numerous hidden costs. These can include specialized diets, medications not covered by insurance, in-home nursing care, transportation, childcare for siblings, and adaptive clothing or supplies. Even small recurring expenses can accumulate into a significant financial burden over time Despite these challenges, families can find support through a combination of strategies and community resources. Social workers and care coordinators can help navigate insurance, identify financial assistance programs, and connect families with nonprofit organizations that provide grants, equipment, or respite care. State and federal programs may offer support for home modifications, medical equipment, or caregiving needs. Families can also benefit from advocacy networks that help ensure access to needed care and financial protections.
Conclusion
Although Claire and Chloe are the same age, their experiences of childhood differ dramatically. Claire’s world is characterized by autonomy, exploration, and typical developmental milestones, whereas Chloe’s is shaped by medical dependency, environmental limitations, and constant adaptation. Understanding medically complex childhoods requires recognizing these differences not as deficits, but as variations in lived experience. Meaningful inclusion demands individualized educational planning, interdisciplinary collaboration, and family-centered care that acknowledge both the child’s medical needs and their right to participate fully in the experiences of childhood.
References
Antonelli, R., & Lind, C. (2012, October). Care mapping: An innovative tool and process to support family-centered, comprehensive care coordination [Poster session]. Annual Primary Care Innovation Conference, Harvard Medical School Primary Care Center, Boston, MA.
Buja, A., Francesconi, P., Bellini, I., Barletta, V., Girardi, G., Braga, M., Cosentino, M., Marvulli, M., Baldo, V., & Damiani, G. (2020). Health and health service usage outcomes of case management for patients with long-term conditions: A review of reviews. Primary Health Care Research & Development, 21(e26), 1–21. https://doi.org/10.1017/S1463423620000080
Chua, K.-P., & Gleeson, S. P. (2023). Pediatric care management programs: The evidence gap remains. Pediatrics, 152(6), e2023063241. https://doi.org/10.1542/peds.2023-063241
Kobussen, T. A., Hansen, G., Brockman, R. J., & Holt, T. R. (2020). Perspectives of pediatric providers on patients with complex chronic conditions: A mixed-methods sequential explanatory study. Critical Care Nurse, 40(5), e10–e17. https://doi.org/10.4037/ccn2020710
Leyenaar, J. K., Freyleue, S., Arakelyan, M., & Schaefer, A. P. (2025). Hospitalizations by children with medical complexity from 2009 to 2022. Pediatrics, 156(2), e2025071774. https://doi.org/10.1542/peds.2025-071774
Thomas, P. A., Liu, H., & Umberson, D. (2017). Family relationships and well-being. Innovation in Aging, 1(3), igx025. https://doi.org/10.1093/geroni/igx025
Thomson, J., Shah, S. S., Simmons, J. M., Sauers-Ford, H. S., Brunswick, S., Hall, D., Kahn, R. S., & Beck, A. F. (2016). Financial and social hardships in families of children with medical complexity. The Journal of Pediatrics, 172, 187–193.e1. https://doi.org/10.1016/j.jpeds.2016.01.049
Bonnie Boomsma, RN, BSN, BSW, CMSRN, CCM, Care Manager RN, Barbara Bush Children’s Hospital, MaineHealth Maine Medical Center, Portland Bonnie has spent her career advocating for children and their families, initially as a social worker and now as a nurse case manager. She is a member of the CMSNE and CMSA and serves on the CMSNE Pediatrics Committee.
Jennifer Boone, LCSW, Manager of Social Work and Complex Care Management MaineHealth Maine Medical Center Portland Jenny has been a Licensed Clinical Social Worker since 2013 with a majority of her career spent supporting pediatric patients and their families in the Neonatal Intensive Care Unit of the Barbara Bush Children’s Hospital. Jenny held this role for 10 years before transitioning to the role of Manager of Social Work and Complex Care where she oversees both pediatric and adult Social Work Care Managers. Jenny is a member of CMSA and is the Maine Board Extension Co-Chair for Case Management Society of New England.
