Managing your heart condition.

If you are an adult living with a heart defect, you should have regular access to a cardiologist. This is vital to ensure you talk about about treatments, medicines, and the ongoing and long-term care for your specific CHD condition.

Armed with this knowledge you can make the best possible choices for your health.

When seeing a CHD Specialist, Cardiologist or GP it helps to know your medical history. This  includes:

  • Type of heart defect you have
  • Procedures or surgeries you have had performed
  • Medications that are currently prescribed for you and were prescribed in the past
  • Type(s) of care you need.

The right, ongoing medical care will help children and adults with a congenital heart defect to live as healthy a life as possible.

Check out our Frequently Asked Questions on living with and managing a heart condition.

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Different kinds of Congenital Heart Defects

Congenital heart defect (CHD) describes a heart condition or defect that developed in the womb. The term “congenital” means the condition is present from birth. The Somerville Foundation is the UK’s only charity that supports Adult Congenital Heart Patients (ACHD).

CHD is one of the most common types of congenital disability, affecting up to eight in every 1,000 babies. Today, there are over 250,000 adults who were born with such a condition living in the UK. And there are now more adults than children living with the condition.
These patients all have different experiences, struggles and achievements. We provide Adult Congenital Heart Support in a number of ways such mental health and well being, assistance in applying for grants, providing relevant information and access to resources and hosting events.
And, with many distinct types of CHD, we aim to ensure they all receive the medical care, support and advice they need to lead happy, healthy lives.

But we can’t do it alone. In order to ensure they enjoy access to every opportunity, are free from discrimination, and are fully supported throughout their lives, we need your help.

What causes congenital heart defects?

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:

  • Down’s syndrome
  • Infections (of the mother) during pregnancy (e.g. rubella)
  • Where the mother has taken certain medications while pregnant (e.g. anticoagulants or antiepileptics)
  • Where the mother has experienced diabetes during pregnancy
  • Inherited chromosome/gene defects
  • The mother smoking or drinking alcohol during pregnancy

CHD is sometimes picked up during an ultrasound scan before a baby is born. However, in many cases CHD is not diagnosed until after the baby is born. Some conditions may not be discovered until the child becomes an adult.

What are the types of CHD?

There are many different types of CHD. Sometimes it is possible to suffer from more than one defect.

List of Conditions

  • Aortic stenosis. A narrowing of the aortic valve opening.
    Atrial septal defect. A hole in the wall that separates the top two chambers of the heart.
  • Large ventricular septal defect. A hole in the wall that separates the heart’s lower 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 and between the ventricles.
  • Double inlet ventricle. Where both atriums feed into the left ventricle.
  • Hypoplastic left heart. Where the left lower pumping chamber (ventricle) 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 main pumping chamber on the right side 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 where your heart suddenly beats much faster than usual due to improper electrical activity in the upper part of the heart.
  • Tetralogy of Fallot. A condition with four different heart problems. A hole in the wall between the heart’s main pumping chambers, an overly narrow valve between the heart and lungs, a right heart chamber with walls that are too thick and a mispositioned major blood vessel.
  • Transposition of the great arteries. Where the pulmonary and aortic valves and the arteries they’re connected to have swapped positions.
  • Tricuspid atresia. A complete absence of the tricuspid valve.

Treating Congenital Heart Defects

Treatment for CHD depends on the type and severity of the condition. For minor problems, treatment may never be needed, while others may require medication or heart surgery; often throughout adulthood. Just 60 years ago, the majority of babies born with a congenital heart defect did not survive to see their first birthday.

Today, eight out of ten survive to adulthood -.The BHF

But there is much more that can be done. Help us make a difference.

Living with Ebstein’s Anomaly.

What is Ebstein’s Anomaly

Ebstein’s Anomaly is a rare condition that is present at birth (congenital). With Ebstein’s Anomaly, your tricuspid valve — the valve between the two right heart chambers — is not positioned inside the heart as it should be.

As a result, blood may leak back through the valve. This can make your heart work less efficiently. Ebstein’s anomaly can also lead to enlargement of the heart and even heart failure.

Ebstein’s anomaly is not just a valve disease because it can also involve the heart muscle.

How common is Ebstein’s Anomaly?

Ebstein’s Anomaly occurs in 0.5% of people born with congenital heart disease and is frequently associated with other congenital heart problems, such as atrial septal defect (ASD), ventricular septal defect (VSD), pulmonary stenosis and pulmonary atresia.

What are the common symptoms associated with Ebstein’s Anomaly?

Ebstein’s can be mild, and people may have no symptoms for many decades until they are diagnosed.

On the other hand, it can be very apparent in newborn babies, or later on in life, and can be so severe that surgery is necessary.

Where signs and symptoms are present they can include:

  • Shortness of breath
  • Poor exercise tolerance
  • Chest pain
  • Fatigue
  • Heart palpitations or abnormal heart rhythms (e.g. atrial flutter, fibrillation and arrhythmias)
  • A bluish discolouration of the lips and skin caused by low oxygen (cyanosis)
  • A bluish discolouration of the finger and toenails.

How is Ebstein’s Anomaly treated?

In mild cases of Ebstein’s Anomaly, careful monitoring of your heart may be all that’s necessary. However, if the symptoms are bothering you, and/or if the heart is enlarging or becoming weaker, treatment may be necessary. Treatment options include medications and surgery.

If you have Ebstein’s, it is vital that you are seen and assessed in a specialist CHD centre where CHD cardiologists agree on the necessary investigations and treatment that are right for you.

The usual indications for surgery are the appearance of heart failure, cyanosis, arrhythmia and deteriorating exercise capacity.
Surgery aims to repair the valve. If this is not possible, a valve replacement will be performed. Surgery to treat the arrhythmia may also be required at the same time.

With the right, ongoing medical care people with Ebstein’s’ Anomaly can have a good quality of life.


Living with Pulmonary Hypertension

What is Pulmonary Hypertension?
Pulmonary hypertension (PH) can be a serious medical condition.

During exercise, the heart beats quicker to get more oxygen to the muscles. At the same time, the blood vessels (the pulmonary arteries) carrying blood to the lungs expand to allow more blood through.  With PH, the walls of the pulmonary arteries are thicker, and are less able to stretch. So, the heart has to work harder to pump blood to the lungs.

Over a long period (months or years), this can put a strain on the heart, and it can start to work less effectively.

How common is Pulmonary Hypertension?

Pulmonary hypertension is a rare condition affecting one to two people in every one million. Older women are at higher risk of the condition, but it can affect men and women of all ages.

In the vast majority of cases, PH is associated with another medical condition including:

  • Portal hypertension
  • Connective tissue disease (e.g. systemic sclerosis)
  • HIV infection
  • Congenital heart disease
  • Sickle cell anaemia.

PH should not be confused with hypertension (high blood pressure).

What are the common symptoms associated with Pulmonary Hypertension?

PH might not be noticeable for months or even years. As the disease progresses, symptoms become worse. Where symptoms are present they can include:

  • Shortness of breath while exercising (and eventually while at rest)
  • Racing pulse or heart palpitations
  • Fatigue
  • Dizziness or fainting spells
  • Chest pressure or pain
  • Swelling in your ankles, legs, and eventually in your abdomen
  • A bluish discolouration of the lips and skin caused by low oxygen (cyanosis).

PH can lead to complications, including heart enlargement and heart failure, blood clots, arrhythmia and bleeding into the lungs. On occasion, PH can be fatal.

How is Pulmonary Hypertension treated?

If you have PH, it is essential to find out which type of PH you have. Not all forms are serious.

Treatment options will depend on the type and severity of PH you have. Some treatments relieve the symptoms of PH, and therefore improve quality of life. Others slow the progression of PH and can also help to reverse damage to the heart and lungs.

Treatment for PH includes:

  • Conventional therapy
  • Targeted therapy
  • Surgery.

Many PH patients are treated with both conventional and targeted therapies.

With the right, ongoing medical care people with Pulmonary hypertension can have a good quality of life.

Helping you make healthy decisions

Get your Personal Health Passport and manage your heart condition more effectively.


With your help, we’ve helped fund new and improved treatments for congenital heart disease. we opened the UK’s first dedicated Congenital Heart Research Centre. we’ve organised receptions at the House of Lords and House of Commons, a film première, concerts, parachute jumps, marathon runs, annual sponsored walks and masquerade balls. we ensure that adult CHD patients enjoy access to every opportunity, are free from discrimination, and are fully supported throughout their lives. we’ve staged annual conferences, regional patient information days and workshops throughout the UK. we’ve published a range of leaflets for CHD patients on a wide-range of topics. we’ve launched a Freephone patient helpline to provide practical advice, a listening ear, and emotional reassurance at times of stress. we’ve created online networks where congenital heart patients can connect with each other. we successfully applied for a Comic Relief grant to help develop mental health support services. we’ve contributed to adult congenital heart disease nurse training days and taken part in various study days and conferences for medical and health professionals. we’ve established a benevolent fund for members who are in financial hardship. we’ve organised residential weekends and outward bound holidays for teenagers and adults, providing congenital heart patients with the opportunity to meet and gain support from each other.

Just think what else we could do if you donate, fundraise or volunteer for us.