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.

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