My Heart Condition
Most likely you already know you have Congenital Heart Disease as many cases are now detected before birth during an ultra sound scan. However, CHD may not diagnosed until after a baby is born with some conditions not being discovered until adulthood.
As you get older you may become more curious about your condition and might want to know more. As you move to adulthood and start to take control and manage your heart condition with your medical team, it is good to know as much as possible so you can make informed choices. So, let’s start with the basics.
What is Congenital Heart Disease?
Congenital Heart Disease (CHD) is the name for a heart condition or defect that occurs during the development before birth. The word ‘congenital’ means existing at birth. In adults, it is known as Adult Congenital Heart Disease (ACHD).
Congenital Heart Disease is one of the most common types of congenital disorder, affecting around 1 in every 100 births according to the NHS. It is estimated there are over 250,000 people who have survived into adulthood, with now more than twice the number of adults with the condition than children as around 85% now survive as opposed to 15% during the 1950s and 1960s.
Many adults living with CHD require life-long follow up by clinicians and Specialist ACHD Hospitals. Other needs greatly differ, depending on their experiences, struggles, achievements, and the psychological effects of the condition.
What are the types of Congenital Heart Disease?
There are many different types of Congenital Heart Disease. Sometimes it is possible to have more than one type at a time. You can also ask your medical team or one of our CHD Health Youth Workers to explain your condition.
Common congenital heart conditions
(the following information has been taken from the Somerville Heart Foundation)
Aortic stenosis. A narrowing of the aortic valve opening
Atrial septal defect. A hole in the wall that separates the two atria (upper pumping chambers)
Ventricular septal defect. A hole in the wall that separates the two ventricles (lower pumping chambers)
Coarctation of the aorta. Where the main large artery is narrower than normal
Common arterial trunk. Where part of the heart failed to divide properly
Complete and partial atrioventricular septal defect. A hole between the atria (upper pumping chambers) and between the ventricles (lower pumping chambers)
Double inlet ventricle. Where both atriums (upper pumping chambers) feed into the left ventricle (lower pumping chamber)
Hypoplastic left heart syndrome. Where the left ventricle (lower pumping chamber) does not develop properly
Patent ductus arteriosus. Where a particular vessel does not close and remains open after birth
Pulmonary atresia with intact ventricular septum. Where the valve which allows blood to flow from the heart to the lungs is completely blocked, and the ventricle on the right side (lower pumping chamber) has often not developed normally
Pulmonary stenosis. Where the valve which controls the flow of blood out of the heart into the lungs is narrower than normal
Supraventricular tachycardia. A condition when a heart suddenly beats much faster than usual due to improper electrical activity above the ventricles (lower pumping chambers)
Tetralogy of Fallot. A condition with four different heart problems. A hole in the wall between the heart’s ventricles (lower pumping chambers), an overly narrow valve between the heart and lungs (pulmonary stenosis), an enlarged and mispositioned aortic valve, and a right ventricle (lower pumping chamber) with walls that are too thick
Transposition of the great arteries. Where the pulmonary and aortic valves and the arteries they are connected to have swapped positions
Tricuspid atresia. A complete absence of the tricuspid valve
How is Congenital Heart Disease treated?
Treatment for Congenital Heart Disease depends on the type and severity of the condition. For minor problems, treatment may never be needed, while others may require medication, a procedure or intervention, or heart surgery.
Many people with CHD will need life-long expert medical care, usually attending follow-up appointments, at a hospital specialising in CHD.
It is important for all adults with congenital heart disease to be seen by an expert from a Specialist ACHD Hospital at least once to receive a written care plan.
What causes Congenital Heart Disease?
In most cases, there is no apparent cause of congenital heart defects. We just don’t know why a heart hasn’t developed normally.
However, some things do increase the risk of CHD. These include:
- Infections during pregnancy e.g. Rubella
- Where the mother has experienced diabetes during pregnancy
- Inherited chromosome/gene defects e.g. Down Syndrome
- Maternal drugs e.g. anti-epileptics, lithium, alcohol
Links
NHS – Congenital Heart Disease
British Heart Foundation – Congenital Heart Disease
Somerville Heart Foundation – What is Congenital Heart Disease?
Explore Youth at Heart
Youth at Heart are a charity committed to young people aged 13-24, and their families, who are living with Congenital Heart Disease (CHD) in South West England and South Wales.
We empower, inform and support them to live their best life.
For young people
We are committed to supporting you as you start your Transition Journey aged 13 and leading up to your Transfer from Paediatrics to Adult Services and beyond, until your 25th birthday.
For the whole family
Youth at Heart recognise that congenital heart disease affects the whole family, which is why our Youth Workers are there for families too.
For professionals
Youth at Heart is a charity independent from the NHS that works in partnership with health professionals across the South Wales & South West Congenital Heart Disease Network.
Get involved
Youth at Heart rely on funds being raised through donations, grants, events and activities and for people to get involved to help us carry on our important work.