What is a heart warrior?
Shortly after my baby was diagnosed with a Congenital Heart Defect (CHD), I was thrust into a new world with all different terminology, like, heart warrior. If your child is diagnosed with CHD, you start to look at hearts differently and notice them everywhere.
Everything heart takes on a whole new meaning. Add heart to various everyday words and it takes on a special significance in the CHD space. Let’s get into what is a heart warrior.
What is a heart warrior?
A heart warrior is a person living with a Congenital Heart Defect or Congenital Heart Disease (CHD). Congenital means present since birth. They are born with their heart defects and heart disease. You might see the abbreviation HW for heart warrior in a CHD context.
CHD warrior and CHD heart warrior are, likewise, someone living with congenital heart disease, just alternative names.
Why are heart warriors called warriors?
Merriam-Webster dictionary defines a warrior as “a person engaged or experienced in warfare” and “broadly: a person engaged in some struggle or conflict.”
While heart warriors are not engaged in war in the traditional sense. Nevertheless, they are called warriors because they battle their whole life fighting and managing their Congenital Heart Disease (CHD).
Those with CHD go through countless doctor’s appointments, tests, and procedures. They might take medication, attend therapies, and be restricted in their activities. Many also face open-heart surgery or other surgeries.
Is anyone with CHD not a heart warrior?
Yes, not because certain Congenital Heart Defects or Disease or experiences qualify one or not for the title. But because it depends on what the individual wants, and not all those with CHD consider themselves a heart warrior.
It’s just another label. Every individual’s journey with CHD is different. Ultimately only they can decide what is or is not a label they want to identify with.
Is everyone with heart disease a heart warrior?
No, everyone with heart disease is not considered a HW. It is a special designation for those living with congenital heart disease rather than acquired heart disease.
Heart warriors are individuals born with atypical hearts. While certain congenital heart defects (CHDs) can be repaired, CHD remains a lifelong condition without a cure.
Those with CHD live with it and are affected by it, in varying capacities, for life. Acquired heart disease is not present at birth. It happens to a typical healthy heart over time.
There are select cases where a baby or child was not born with CHD but had a significant heart event (e.g. heart attack, severe illness that affected their heart) early in their life. They may have gone through major heart procedures and surgeries and need ongoing cardiac support their entire lives. I would call these kids heart warriors too. Once again, it’s only a label, there are no hard and fast rules.
What makes a heart warrior so special?
Heart warriors face lifelong battles against their disease. They have to be brave, often right away within the first few seconds after birth. CHD warriors might face major obstacles, such as open-heart surgery, heart failure, and atypical heart anatomy and functioning, that most heart-healthy people will never experience in life.
Unfortunately, those living with CHD have no choice over these matters. They are born and live with Congenital Heart Disease their entire lives, and therefore, have to manage it and all the ups and downs.
Even when they don’t want to, they’re pushed to be brave and face many challenges most people never experience.
What is heart healthy?
In the CHD world, a heart healthy person is considered someone who was born with a typical (structurally and functionally), healthy heart. You might see the abbreviation HH for heart healthy in a CHD environment.
What is an invisible illness?
An invisible illness is an ongoing (chronic) illness or disease that is not outwardly visible or easily detected by only looking at someone.
Many heart warriors look “healthy” or “normal” with no outward signs of their disease. This is considered an invisible illness.
Those with CHD commonly have visible and invisible scars due to the physical and mental burdens of CHD.
What is a heart angel?
A heart angel was a heart warrior who lost their battle with Congenital Heart Disease and passed away due to CHD. Tragically, 25% of CHD warriors born with a complex CHD will not make it to one year of age.
How many people are heart warriors?
No cohesive surveys or studies are tracking Congenital Heart Disease across the entire population, but it is estimated that 2-3 million people in the United States, children and adults, are living with CHD.
Approximately 1 heart warrior baby is born every 15 minutes in the United States which is about 40,000 per year.
What is a heart mom?
A heart mom is a mom of a heart warrior. Likewise, a heart dad is the dad of a CHD warrior. A heart sibling is the sibling of a CHD warrior. A heart grandmother is the grandmother of someone with CHD, etc.
I am a heart mom to an incredible heart warrior. I’ve watched her go through more than anyone, especially any baby, should ever have to go through. Warrior seems like a fitting title to me.
Do you know someone with Congenital Heart Disease? What do you think of the term heart warrior?
Don’t miss!
- CHD books for your heart warrior and heart family
- Understanding open heart surgery scars
- Introducing a CHD medical team – part 1
- What questions to ask about your baby’s heart surgery
- Becoming a heart mom: Pregnancy edition
- Becoming a heart mom: Birth edition
