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Every 20 minutes a child with complex medical conditions dies in the U.S.

It's very rare that children die: 99.95% LIVE!  Sadly, some do.


Children with complicated, chronic, and/or life-limiting illness place heavy demands on family members. Despite becoming expert caretakers, parents are often taxed beyond their ability to cope well, balancing spousal demands, work schedules, and parenting duties of other children. In the U.S., less than 1% of all children are living with medical complexities (CMC) 1, and according to the CDC, 45,187 children under 21 years old died in 2020.

While the family home may be a suitable environment for these children, competing forces increase pressure on family caregivers and raise the critical need for supplementary out-of-home solutions. These challenges include pediatric home health nurse shortages 2, longer lives of CMC due to medical advances, and insufficient insurance reimbursement.

Infants are at 18 times greater risk of dying than children that survive beyond the age of 1 

  • 90% of all infant deaths <1 are from medical complexities 

  • 47% of infant deaths are from birth/perinatal related issues

  • Almost 1 in 5 of all infant deaths are considered abnormal or were undiagnosed - leaving unanswered questions for parents and caregivers


  • 1/4 of these deaths (Ages 1-20) are caused by Cancer related conditions - the #1 factor

  • Over half of deaths are from body system complications - combinations of many specific diseases not tracked to a centralized database

  • 1 in 8 of the deaths are from "abnormal or undiagnosed" reasons - leaving unanswered questions for parents.

Many children on life-limiting journeys are suffering from comorbidities, meaning there likely is a primary disease or condition in combination with potentially other challenging medical conditions. For instance, in the U.S., the prevalence of developmental disabilities in children such as autism spectrum or attention-deficit/hyperactivity disorders is quite high; nearly 1 in 5 U.S. children are recognized as having “special needs”. Those diagnosis are not typically life-shortening by themselves, however in combination with severe cerebral palsy or a rare genetic blood disorder for instance, a life span may not reach adulthood. What is valuable to remember is that every child is on a unique path, and they and their families need to be supported.

Recognizing children that have even more complexity to their health conditions is important because this overall group represents a disproportionate share of health spending and the interventions needed to support their care are often different than caring for the broader groups of children with special health care needs. 3 There are countless situations that create unmet needs for these families such as a lack of respite care, missing family mental healthcare, lack of insurance coverage, low service availability, high service costs, or other inability to access prescription medications or therapy services. 4 While children with medical complexities represent less than 1% of all children, they account for a significant 1/3 portion of the pediatric health care costs, as well as over 40% of all children hospital deaths. 5 3

Often located in the major U.S. cities, larger health systems anchored by a children’s hospital become a central resource for top medical specialists with expertise in CMC conditions. 6  But the array of community-based services for CMC care extends beyond outpatient and hospital services, and can include rehabilitation centers, durable medical equipment vendors, social work, home and school nursing, personal care attendants, and occupational, physical, and speech therapies, among others. 5 Parents are forced to “see across boundaries and silos” to assure their child receives the needed care and services because much of care is non-medical. 7

There is often an underappreciation for the proportion of CMC health service usage occurring in community-based settings, particularly home health, pharmaceutical, and mental health. 3 Since these services and providers can be spread across an expansive geography, and not equally distributed within communities, the access to care can be impacted and negatively fragmented. 7 Frequently CMC are involved with as many as 10 to 20 health care specialists and providers and are recognized to be highly likely to benefit from care coordination. 5

  • Which state the child and family lives in will impact their access to services, alter the level of Medicaid coverage eligibility, and skew the level of support. 8

  • In regions where services are sparse, it can often happen that needed care is just not available or wait lists are very long due to the system being overburdened or under resourced. 9 

  • Without high quality coordination, members of the expanded care team may incorrectly assume that another provider is addressing an element of the child’s comprehensive needs. 5


1. Staff N. National care coordination standards for children and youth with special health care needs – the national academy for state health policy. Accessed Mar 10, 2021.

2. Weaver MS, Wichman B, Bace S, et al. Measuring the impact of the home health nursing shortage on family caregivers of children receiving palliative care. J Hosp Palliat Nurs. 2018;20(3):260-265. doi: 10.1097/NJH.0000000000000436 [doi].

3. Cohen E, Berry JG, Sanders L, Schor EL, Wise PH. Status complexicus? the emergence of pediatric complex care. Pediatrics. 2018;141(Suppl 3):S202-S211. doi: 10.1542/peds.2017-1284E [doi].

4. Lindly OJ, Chavez AE, Zuckerman KE. Unmet health services needs among US children with developmental disabilities: Associations with family impact and child functioning. J Dev Behav Pediatr. 2016;37(9):712-723. doi: 00004703-201611000-00004 [pii].

5. Berry JG, Agrawal RK, Cohen E, Kuo DZ. The landscape of medical care for children with medical complexity. Children's Hospital Association. 2013:1-15.

6. Best children's hospitals 2020-21: Honor roll and overview. US News & World Report Web site. Accessed Dec 20, 2020.

7. Allshouse C, Comeau M, Rodgers R, Wells N. Families of children with medical complexity: A view from the front lines. Pediatrics. 2018;141(Suppl 3):S195-S201. doi: 10.1542/peds.2017-1284D [doi].

8. Abdi F, Seok D, Murphey D. Children with special health care needs face challenges accessing information, support, and services. Child Trends. 2020.

9. McNally Keehn R, Enneking B, Ramaker M, et al. Family-centered care coordination in an interdisciplinary neurodevelopmental evaluation clinic: Outcomes from care coordinator and caregiver reports. Front Pediatr. 2020;8:538633. doi: 10.3389/fped.2020.538633 [doi].

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