CoHD Condition Types
Find trusted information on the spectrum of childhood-onset heart disease (CoHD) condition types, including congenital heart diseases and acquired heart diseases.
Congenital Heart Diseases (CHD)
Congenital heart disease (CHD) (also known as congenital heart defects) refers to problems with the heart’s structure that are present from birth. CHD is the most common congenital disorder in newborns, impacting approximately 8-10 in 1000 live births.
Acquired Childhood Heart Disease
Acquired Childhood Heart Disease refers to heart defects that develop during childhood, often after an illness or an infection. Acquired childhood heart disease may also be the result of chronic disease or medications.
CoHD Resources for Families and Caregivers
HeartKids has an extensive library of resources designed to support people impacted by CoHD, at all stages of life.
Our resources include factsheets, videos, animations and podcasts and more, all of which aim to help you better understand managing your health and wellbeing while living with CoHD.
Resources for parents/carers navigating a new diagnosis
CHD Real Talk on New Diagnosis | Video
Navigating a new diagnosis | Factsheet
One of my twins was born with a heart condition | Podcast
Resources for parents/carers of school-aged children
Starting School: A guide for parents
Starting School and CHD: What do we need to know?
Resources for teens and young people
CoHD Explained: transitioning to adult healthcare
Growing up with a heart condition
Resources for Aboriginal and Torres Strait Islander people
Resources for heart adults
CoHD Explained: Contraception, Parenthood, and Pregnancy
Adulthood with your heart condition
Resources for bereaved families
HeartKid Sibling and Health Care Advocate: Syeda’s Story
My Family’s Journey Of Congenital Heart Disease, Grief, and Hope… Dominic’s Story
Frequently Asked Questions About CoHD
What is the condition CoHD?
Childhood-onset heart disease (CoHD) is an umbrella term that encompasses any and all heart conditions that impact children.
CoHD includes:
- Congenital heart defects, which are heart problems that a child is born with, and
- Childhood-acquired heart conditions, which are heart problems a child develops after birth
There are many conditions that fall under the banner of CoHD, all of which will impact people differently.
What are the symptoms of CoHD?
The symptoms of congenital heart conditions can vary depending on the type and severity of the condition. Some people with congenital heart conditions do not experience any symptoms.
In serious cases of congenital heart conditions, symptoms will be noticeable early in life, often immediately after birth. Symptoms can include, but are not limited to:
- a blue tinge to the skin, lips or fingernails (also known as cyanosis)
- irregular or rapid breathing
- swelling in the legs, hands, belly or around the eyes
- shortness of breath during feeding leading to poor weight gain.
Sometimes, congenital heart conditions may not be diagnosed until later in life. Symptoms may include:
- extreme fatigue and shortness of breath during exercise
- fainting during exercise
- swelling in the hands, ankles or feet.
Where can I get mental health support for CoHD?
HeartKids offers a confidential mental health and wellbeing counselling service — a safe space to talk about everyday challenges, stress, grief and loss, loneliness, relationships, and coping strategies for difficult times.
- Children and young people impacted by CoHD
- Siblings of children with CoHD
- Adults living with CoHD
- Parents and carers
To access this service, call the HeartKids Helpline on 1800 432 785.
You can also find plenty of resources on mental health and CoHD in our Resource Library.
How CoHD impacts adults
The ways in which CoHD will impact you in adulthood will vary depending on your condition and the severity of it.
Some types of childhood-onset heart disease may be mild, and managing your health as you grow may involve little more than regular checkups with your cardiologist. Other conditions may cause life-threatening complications, and may require medication or surgery.
Advances in diagnosis and treatment have improved outcomes for those with CoHD, and most people with CoHD are able to live normal, happy and healthy lives.
The HeartKids podcast From The Heart has dozens of episodes where heart adults share their stories. Listen to episodes here.
You can also additional resources for heart adults in our Resource Library.
