As a Mum or dad of a Medically Fragile Little one, How I’ve Discovered to Keep Calm in a Disaster – California Well being Report
I am the parent of a 10 year old child with complex and medically intensive disabilities. The disabled community has been incredibly friendly and I was fortunate enough to learn more about how adults with disabilities fit into the world and how I can raise my son to accept his body and how it works. My goal as a parent is to raise a child who feels comfortable and can live independently.
To do this, I need to be able to maintain his unstable airways and breathing. My son has a tracheostomy – a surgically made artificial airway that is held open by plastic tubing. He also uses a ventilator – a machine that breathes for him overnight because his body doesn’t always initiate breathing.
Parents of children with fragile, medically complex disabilities are expected to provide the same level of care that intensive care units provide, but are expected to do so in the home setting. When a child in the hospital stops breathing, the staff calls a “blue code” and experts from across the hospital come running to help. When a child stops breathing at home, seconds count and help is minutes away. We, parents of children with respiratory disabilities, have an obligation to provide the same care that the hospital provides – but without assistance. Much is at stake: if you make a mistake, your child may die. There is no comfort in telling a new parent about a fragile baby.
Before my life as a mother and a health and disability rights attorney, I worked as a police officer. Law enforcement officials expected me to stay calm in an emergency to get my job done. I was exposed to extreme stress and received special training in how to maintain my composure and perform critical tasks in emergency situations.
An important thing that I learned as a police officer is that in an emergency, people do not step up on this occasion, but rather reach their level of education by default. Doctors also know this, which is why they repeatedly drill tasks like CPR. This allows them to switch to autopilot in an emergency to complete procedures such as intubation and lung resuscitation that improve their fine motor skills.
The human body reacts to extreme stress by releasing cortisol. This hormone triggers a cascade of physical reactions that prepare the body for the fight or flight response. Your heart rate increases and your body shifts its energy towards major muscle groups and away from fine motor skills. Have you ever been so angry or scared that you couldn’t do a simple task like turning your keys in the door? That’s cortisol at work. The cortisol response is useful when you’re dealing with a dog who is trying to bite you. In such a situation, instead of arguing with the dog, you will have to fight or run away. However, the fight or flight response isn’t helpful when trying to figure out why a ventilator alarm is sounding or when you need to slide a three-millimeter tube into a four-millimeter hole in your child’s neck while they are blue and limp. This dire situation is all too common for parents of children with tracheostomies.
As a police officer, I was trained to do breathing exercises to keep cool in an emergency. These exercises consist of inhaling through your nose for four seconds, holding your breath for four seconds, exhaling through your mouth for four seconds, and then holding your breath again for four seconds. This counteracts the cortisol cascade and causes the heart to slow down. Once you’ve lowered your heart rate, you can control how your body reacts to the emergency and carry out the complex fine motor and cognitive tasks necessary to save your child’s life.
Hospitals give parents of medically ill children a list of things to do in an emergency. However, this training does not explain how a real emergency can affect how it works and what to do about it. Being able to remain calm in an emergency, make complex decisions, and perform complex fine motor skills is not a trait that humans are born with. It’s a learned skill. Hospitals are better at teaching it, and parents are better able to acquire these skills outside of the hospital as the need becomes apparent.
I keep seeing it in my online support groups. Parents leave the hospital thinking they know what to do in a crisis to freeze in an emergency. Freezing in a critical situation is a common response, especially for people who are not trained first responders and have never faced a real life and death emergency. It is incredibly traumatic to practice a skill and then watch your hands fail the task you ask them to do. We can prepare parents for success in critical situations by providing them with the tools to control their own emotional and physical responses while looking after their children.
I was fortunate enough to have a background as a first responder. When the hospital started the training process for my son’s tracheostomy, I remember thinking the wound was so much smaller and cleaner than a bullet hole. In some ways, managing your airway seemed easy compared to the things I’d done in the past. But most parents of medically ill children do not share my background as a first responder.
I wanted to tell my story to help other caregivers of medically ill children. I am passionate about helping these families that are often overlooked by the wider community. I look forward to being a regular columnist for the California Health Report, where I write about the challenges facing families of children with medically severe disabilities, as well as larger topics related to disability rights. We’d love to hear your ideas or thoughts – send them to firstname.lastname@example.org.
Thank you for participating in this conversation. If you are the parent of a medically ill child, I see you. If you’re a broader community member, thank you for listening. I look forward to helping other families work together to make the programs we rely on run more smoothly.
Jennifer McLelland holds a bachelor’s degree in politics and management from the University of Southern California and a master’s degree in criminology from California State University at Fresno. She worked on patrol for the Fresno Police Department for eight years. She is currently a home mom and is paid as a caregiver under the In Home Supportive Services program. She is an active advocate for disability rights as well as domestic and community services.