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

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.

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.

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 gov.uk 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.

MESSAGE FROM PROFESSOR SOMERVILLE

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