The Somerville Foundation is the only UK wide charity dedicated to supporting adults born with all types of heart conditions (Congenital Heart Disease). We also support young people transferring into adult heart services. As a charity, we are reliant on donations to support those adults affected by Congenital Heart Disease. Help us make a difference.


19 July 2021 – NHS SAFETY Alert – Important Alert for those with Mechanical Heart Valves. Please read our blog post to read the full alert.

Who We Are

There are over 250,000 adults who were born with a heart condition living in the UK. The charity exists to create a world where adults and young people receive excellent medical care, and lead happy, healthy lives.

Our Charity relies on donations from the public, CHD Communities and businesses to carry out the work that we do as well as their involvement in fundraising and running campaigns to improve services.

Read more about how we are making a difference.

What is Congenital Heart Disease (CHD)?

Congenital heart disease (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.

Our New Membership Scheme

Last October we made the exciting announcement about our new membership scheme which is set to launch in February 2021; along with a dedicated area on our website. This is an opportunity to become a member of a patient organisation dedicated to those with Congenital Heart Disease (CHD). Our primary focus is to deliver tailored services, work more closely with partners and identify gaps that need to be filled.

You don’t have to have CHD to join, the scheme is open to anyone with an interest or role in CHD, whether family, friend or healthcare professional.

Membership Options

With 3 levels of membership available, all members will have access to the dedicated members’ section of our website and our wide range of existing services. View More detailed information on Membership and sign up here! You can also read our FAQ’s if you have any specific questions.

How COVID-19 Has Impacted Us

We urgently need your help in order to support adult heart patients who are at increased risk from COVID-19 to get the right medical attention they need, to see their specific NHS clinics – which have changed to COVID centres.  People born with a serious heart condition are potentially at high risk from coronavirus.  Those with CHD are also suffering terribly with loneliness and isolation and are in desperate need of mental health and wellness services.

We know that the vital support we offer is needed now more than ever, and we hope that with your help we can remain sustainable and available to help more adults with ACHD now and in the years to come. Together, we can beat this!

In this difficult time of crisis, our team are working tirelessly to provide the much needed services the ACHD community needs.

We continue to offer:

  • Services of our Mental Health & Wellbeing Counsellor
  • Confidential Helpline
  • Employment law specialist help
  • Life insurance
  • All our social media channels up-dated regularly with interesting and engaging posts
  • Website constantly up-dated with new resources added including Coronavirus guidance of our own, written by Dr Fiona Walker, our medical adviser as well as information from various specialist centres and the British Congenital Cardiac Association (BCCA) and links to nhs and sites.

Thank you for your continued support and understanding at this difficult time. We continue our fundraising efforts via online channels and campaigns. A huge thank you to all those who work behind the scenes supporting our team.

Help Us Make A Difference

Now, more than ever, our community needs us. With many adults shielding as they are at high or extremely high risk, they are completely cut off from their support systems and usual avenues of receiving help. Often, anxiety is at the forefront of someone with a heart condition. Being part of a community of like minded individuals like our private facebook group, they can find the peer support and social interaction they need. Right now, our online communities and mental health counselling are essential to adults with congenital hearts to keep them positive, as healthy as they can be and to not feel alone. We had also initiated three other social groups aimed at young people and parents as well as loved ones of those who have ACHD that have been suspended due to a lack of resources and staff capacity due to COVID19. There is a huge need for these groups to proceed in order to provide the support and network those in these communities need.

We support the ACHD community in so many ways, read more here. Our  biggest objective for all our patients is to empower them to advocate for themselves. Your donation will help us continue our vital work in the ACHD community.

A massive thank you to all, our ACHD patients and supporters for bearing with us, supporting us with the various fundraising campaigns as well as our volunteers and moderators. We can’t do what we do without you.


Watch a special video message from Professor Jane Somerville to the ACHD community.


Become a Friend, Supporter or Patron of The Somerville Foundation and help us with our vision to create a society where those born with a heart condition receive the support and medical care they need to lead longer, happier and healthier lives.

Latest News & Events

Read our latest News, Events & Surveys

New membership scheme set for 2021

The Somerville's new membership scheme is set to go live in February 2021. Insert letter here.

Run the Royal Parks Half 2021 for #TeamTheSF

Join our team and raise awareness for people born with a heart condition! The Royal Parks Half Marathon takes place on the 10th of October 2021; with routes through four of central London’s most beautiful parks; all on closed roads. Join…

Funding Announcement

Announcement Date: 29 October 2020 We were absolutely thrilled to hear that we have been awarded over £43,000 of Government funding from the Department for Digital, Culture, Media & Sport (DCMS) as part of the Coronavirus Community Support…

Big Six Research

DONATE TO THE BIG SIX CAMPAIGN Thank you for joining our fight against congenital heart disease. The Somerville Foundation (TSF) has always worked hard to improve the lives of people who were born with a heart condition. We have a vision…
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Scarred for life

Scarred FOR Life Scarred FOR Life is a special photo exhibition sharing the problems and heartache that accompany living with a heart condition, both mental and physical. The first Scarred FOR Life exhibition was held in 2015 at the Kelvingrove…

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Patient Quotes

Message of Support

“Looking at the last messages we got from you, keep up the good work and talk to us anytime.

During these straightened times your presence and your activity is pretty crucial.” – Tom & Tony Davis, Feb 2021

Lockdown & CHD

“Lockdown and coronavirus have brought me something that I never knew existed, and I only stumbled upon it after trying to call hospitals to see if I was one of the ‘vulnerable’ ones. These people, teamed with my fast-approaching 40th birthday, has inspired me to tell my ‘story’ which, to be honest, I never thought of as a story at all.” – Sarah Richmond

Join our membership scheme for the full story.


“These scars are real. They are battle scars. They bear witness to the greatest battle any of us will ever face, the fight for life itself.”

Special Hearts

“This was tough to deal with as I felt quite guilty, that this was my fault! My son has had three operations already. We speak about our special hearts and our scars that are in the same place.  Life with a child and one that holds much uncertainty for both of us is difficult. Even though we both have limitations I hope that I am able to inspire my son.” – Steven Bradley

Anxiety & CHD

“I still suffer from anxiety and a lack of self-confidence which are rooted in my childhood of being and feeling ‘different’ and unable to do things that other children could do. I think I still want to be ‘normal’, even though I know there’s not really any such thing.” – Claire Choong

Join our membership scheme for full patient stories.

How can you help us?

Make a Donation

Your donation no matter the size or frequency, helps us to continue our vital work for adults and young people born with CHD. Our charity relies on your donations to do all the things that we do!

Join Us

Join our family and get access to fantastic information and guidance through online support and counselling on lifestyle issues, travel, keeping a healthy body and mind and much more!

Get Involved

Do something remarkable and help us make a difference. Just think what else we could do if you (or your company) campaignfundraise or volunteer for us. You can even play our lottery and raise money at the same time!

With your help, we’ve organised receptions at the House of Lords and House of Commons, a film première, concerts, 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 held annual patient events, 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 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’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 COVID support fund for members who are in financial hardship.

© Copyright 2021 – The Somerville Foundation 2021. The Somerville Foundation is a registered charity in England and Wales No. 1138088 and a registered charity in Scotland No. SC049673. The Somerville Foundation is a Company Limited by Guarantee registered in England and Wales No. 07285409. Registered office at 7 Friars Courtyard, 30-32, Princes Street, Ipswich, Suffolk IP1 1RJ. Privacy Policy | Terms & Conditions