For a parent, having a sick child is a heart-wrenching experience, even if they're just sniffling their way through a cold. But the pain and fear are far worse when you don't even understand what you're dealing with. Medical jargon can be tough to decipher, and if you don't know the meaning of a phrase like "medically fragile child," it makes it that much harder to hear it from a doctor when you're already worried sick.
"A medically fragile child, including newborns, may be a child who requires round-the-clock nursing care due to one or more complex medical conditions," Rahul Gupta, M.D., MPH, MBA, Chief Medical & Health Officer for the March of Dimes, tells Romper. "Without the necessary care, treatment, medications, and support, the condition(s) may worsen and be life-threatening."
About 3 million American children are considered medically fragile, according to statistics quoted by US News and World Report. They have conditions that range from premature birth and fetal alcohol syndrome to congenital or developmental disorders like cerebral palsy, spina bifida and certain heart conditions. Life-threatening illnesses such as cancer, and accidents or injuries that result in severe brain trauma, can also fall under this category. Dr. Gupta adds that "neglect and abuse" can cause physical damage severe enough to leave a child medically fragile.
Although serious conditions such as asthma and diabetes can make a child quite sick, they're usually manageable and don't require the intensive care that a medically fragile child needs. "The conditions [under the 'medically fragile' umbrella] are generally chronic and permanent, although improvement can sometimes be achieved," explains Dr. Gupta.
A medically fragile child relies on constant medical intervention, either as a hospital inpatient or through nursing care provided at home. Some of the common treatments they may need include tube feeding, a ventilator to breathe, suctioning of blocked airways, kidney dialysis, catheterization, and physical therapy. "These children also need supportive care for everyday needs such as bathing and feeding," Gupta adds.
Some children have round-the-clock caregivers; for those who receive less than 24-hour services, parents need to be ready at a moment's notice to call for emergency help. Seizures, breathing problems, cardiac arrest, and other crises are a constant threat.
Not surprisingly, all this care comes at a cost. Medicaid and CHIP cover about half of the expenses of children with special health care needs, according to the Kaiser Foundation, and most of these families come from low- or middle-income backgrounds. Depending on the state they live in, families may also be able to "buy into" Medicaid for their child, and higher-income families may also qualify for the "Katie Beckett pathway" that increases Medicaid eligibility regardless of family income.
The Trump administration's proposed Better Care Reconciliation Act, which contains large cuts to Medicaid, has created alarm among families of medically fragile children who rely on the system to help them afford the care they need. In 2017, the Fresno Bee profiled a family whose young son has a form of dwarfism that affects his airway. He has a tracheostomy to help him breathe, needs a ventilator at night, and receives tube feedings five times a day. “Every middle-class family is one medical issue away from bankruptcy,” mom Jennifer McLelland told the paper. “And the Affordable Care Act has made it possible for our lives to continue to function with a disabled, medically fragile child.”
Having a medically fragile child changes a family's life profoundly and permanently. As a moving and insightful essay previously published on Romper explains, parents spend a substantial portion of their lives seeing doctors, sitting at hospital bedsides, or caring for their child's daily needs. Events that other families take for granted — dinners out, date nights, family vacations, or even a relaxed night's sleep — are complicated and sometimes impossible for parents of a child with special health needs.
A "medically fragile" diagnosis is the start of a long and difficult journey for parents, but with skilled medical help and proper emotional and financial support, families learn to adjust to the new normal with the child they love.