There are certain health ailments most children go through: Ear infections. Chickenpox. The common cold. Strep throat.
But what happens when you notice your child has more health issues than others? What if you received a diagnosis that requires long-term observation of your infant’s well-being?
This blog’s purpose is to provide you with some of the answers to questions often posed by parents of medically fragile children.
Definition of Medically Fragile
A medically fragile child is defined as a child whose medical conditions or health problems require 24-hour supervision from a skilled nurse. Often, they are not able to care for themselves and need help with basic activities, such as bathing and feeding themselves, regardless of age.
Medically fragile children sometimes need medical equipment to keep them alive. Some may require a skilled nurse to monitor their heart rate or breathing constantly. Others need to be hooked to a ventilator or be fed intravenously. They may need continuous physical therapy, a urinary catheter, or orthotics.
Hospital visits and doctor appointments are common. They become part and parcel of everyday life for the child and the child’s family and will last for the entirety of the child’s life.
What Causes a Child to Be Medically Fragile?
Several things can cause a child to become medically fragile. Among the most common are the following:
Caring for a medically fragile child is physically and emotionally demanding. They need someone to constantly watch them in case of seizures or if the child stops breathing.
It requires multiple doctor appointments on a regular basis. It may require various hospitalizations or numerous surgeries. It means knowing when to administer medications, and often, it means needing assistance from a specially trained medical caregiver.
This not only affects the child, but the entire family. There are plenty of support groups to help parents navigate this difficult life change.
There are also several things to consider when living with a medically fragile child, such as:
Becoming familiarized with the child’s medical conditions
Becoming familiarized with how to care for the child
How to deal with side effects from medications
Figuring out health insurance coverage and how to financially care for the child
Modifications to the home to accommodate the child’s needs
Backup generators to keep life support machines working if there’s a power outage
How to schedule 24/7 care for the child
In addition to the logistics, parents also have to figure out a way to explain the illness to a child (whether the medically fragile one or siblings), and to field questions from people who mean well, but who don’t fully understand the emotional toll this lifestyle has on parents.