In March 2017, Ms. Coleman’s daughter Justice Hope, who was medically complex and had multiple disabilities, died at age 11. She was the sunshine in the lives of many and communicated using a thousand smiles.
Raising children is challenging. Your head, heart, and mind are always on swivel and your body is in constant motion. It can be hard to keep track of all the people, the activities, the devices, schoolwork, and all the other things.
Raising children with medical complexity includes all of that, and then some. There are lots of services, systems, people, providers, appointments, etc. to find, schedule, and follow up with. This is especially true when your child is diagnosed with complex medical conditions within the first few years of life just as you are trying to get to know them and to figure out how to be a parent.
What happens with military-connected families who may find themselves moving frequently between states (and thus to brand new systems and providers), with family members deployed, or in other situations that do not offer stability of a single place or community in which they can navigate life with a newly diagnosed child with medical complexity? As the number of children with medical complexity has increased, so has the attention on the types of care and policies they need to thrive. In this month’s Pediatrics, Leyenaar et al. put forth an article that shares results of a study of the Incidence of Medical Complexity in Military-Connected Children (10.1542/peds.2024-069653).
How did the authors study medical complexity in military-connected children?
The authors looked at a specific time for diagnosis that they called the “neo-natal period:” from birth to 60 months (5 years). They used claims data from an insurance for military families called TRICARE. The study wanted to see:
- how many military-connected children are diagnosed within the first 5 years of life
- the outcomes for these children if diagnosed during this time
What did the authors find and why is it important?
The study found that 12% of, or 1-in-9, military-connected children are diagnosed with medical complexity by age 5 years. Many studies before this one say that children with medical complexity are less than 1% of children overall; however, this study looks at a specific group of children and shows us that the rate of medical complexity could be higher. Information laying out how many military-connected children have medical complexity can help make sure doctors link families to the right services early and is critical to help policymakers make sure that the rights services and supports are funded and in place for the families of our service members.
Table 1 of the article gives a great picture about the numbers, as well as other biographic information, of children diagnosed with medical complexity, and Table 2 gives details about types of diagnoses.
What can you do with this study?
- If you are a military-connected family, share this within your community and with your child’s doctor. If someone you know or love is a military-connected family member, share this article with them.
- If you are a military-connected family member of a child with medical complexity, reach out to these two very important resources for connection, services, and advocacy opportunities:
- Exceptional Families of the Military—a family-led organization that provides direct support and federal advocacy.
- Exceptional Family Member Program—run by the Department of Defense, helps families manage care within the military system.
