Supporting Young People and Adults born with a Heart Condition

Current Surveys

Congenital Cardiac Disease Review - Patient Experience - Scotland

Our research panel is calling on members to complete a questionnaire to support the review of specialist congenital cardiac services in Scotland.

Please complete the questionnaire if you have had contact with the paediatric and / or adult service within the last two years. The deadline for completion is 31 January 2021 and can be completed online here.

Can you help us improve the quality of services for congenital heart disease?

The Somerville Foundation are involved in a study called CHAMPION to try to improve how the quality of services for congenital heart disease (CHD) is measured and reported in England. We want to hear your views on what makes services good quality, which includes understanding how COVID-19 has affected your experience of health care.

Click here to find out more and for information on how to join the private Facebook discussion group.


The Somerville Foundation are the only UK charity dedicated to supporting adults born with a heart condition (ACHD). There are over 250,000 adults who were born with a heart condition living in the UK. The Somerville Foundation further provides support for young people transitioning into adult heart services. The charity exists to create a world where they receive excellent medical care, and lead longer, happier, healthier lives.

What is CHD?

More About CHD

What is CHD? 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 Congenital Heart Defects?

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.


We have some great new products in our hand crafted section, we’re talking unique, one of a kind, limited edition kinda stuff!  And, raise money for The Somerville Foundation while you buy!

All proceeds go towards supporting young people and adults born with a heart condition. That’s what we call a win-win.

The helpline will be answered Monday-Thurs, 9-5. Please note that this is not an emergency helpline. If you are feeling in despair and really need to talk to someone immediately you should call the Samaritans on 116 123. For medical emergencies go to A&E or dial 999.

We are not able to provide medical advice; please contact your GP or ACHD specialist team in this regard, full contact details can be found on our specialist centres page.

How can you help us?


A special thanks to Chicane for keeping us connected particularly during Covid-19