A dedicated congenital heart research centre – the first of its kind in the UK – officially opened at University Campus Suffolk (UCS) in Ipswich today.
The pioneering research centre, which comprises five laboratories costing tens of millions of pounds, aims to discover more effective ways to treat and support people living with congenital heart conditions.
The centre will utilise UCS’s expertise in cardiovascular science, exercise physiology and psychology and will be screening members of the public and elite athletes for heart conditions, such as those affecting former footballer Fabrice Muamba and England cricketer James Taylor.
“This is one of only a handful of institutes around the world that is actually dedicated to doing congenital heart research. It really is something special for the region,” said world-renowned cardiovascular biologist Dr Christopher Turner, a lecturer in biosciences at UCS.
“There are no heart centres in Suffolk so we are hoping that eventually this will be a centre for the whole region. It will hopefully be a one-stop shop for giving screening, diagnosis and support.
“But there is a long way to go and we are looking for more funding to push that.”
Congenital heart disease means a heart condition or defect that develops in the womb, before a baby is born. For example, a baby’s heart valves may not be formed properly or there may be holes between the heart’s chambers.
Survival rates have significantly increased from 20% in the 1950s to 90% currently.
Dr Turner, who previously worked at the Massachusetts Institute of Technology (MIT), said: “As more and more children survive, we have got a growing adult population that have these congenital heart defects and their needs are really being missed by the NHS.
“In general, (that is because) of funding. The more funding we have, the more we can do. We hope to have better screening and better support for individuals here.”
The research centre is based across three floors in the UCS James Hehir Building. Existing laboratories, such as the stem cell research and exercise research labs, have been refitted.
Work to help patients manage their heart condition has already started. For example, researchers are looking into the mechanisms of exercise behaviour for the betterment of cardiac function.
Dr Turner said: “The research centre consists of three main themes: we have three floors of research and one area is dedicated to looking at better ways of diagnosing and screening individuals with heart conditions.
“We another area purely looking at the treatment of conditions, which a lot of our stem cell research is pushing. And the third area is finding better ways to support adults who have the condition.
“General heart defects are a massive issue in the country at the moment. One in 100 children are born with congenital heart defects, so that means that we have got around 500,000 individuals with these conditions.”
The research centre has been established in partnership with Ipswich-based national charity The Somerville Foundation, which helps people living with the condition. It was only first conceived one year ago.
Dr Turner said: “From my research into cardiovascular defects, it became clear that adults surviving the conditions were having not only physical problems but psychological problems later in life. They had come to see us on numerous occasions to discuss this and we felt really the time was right to try and change this.”
A recruitment drive to attract more leading specialists and researchers has now begun, as the centre now starts to grow.
Congenital Heart Defects (CHD)
- CHD is a general term for a range of birth defects that affect the normal workings of the heart. They are the most common type of birth defect and the leading cause of infant death in the UK
- Around 15,000 patients are ‘ticking time bombs’ and do not receive the specialist support they need
- Recent advances in medicine have improved survival rates, but many patients face physical limitations and an uncertain lifespan into their adulthood
- What causes congenital heart disease? In most cases, something has gone wrong in the early development of the foetus. Some heart conditions are due to faulty genes or chromosomes. But often it is not understood why the baby’s heart hasn’t developed normally.
- How is congenital heart disease detected? Some congenital heart problems are now picked up when the mother has an ultrasound scan during pregnancy, but sometimes they are not found until after the baby has been born. Some conditions may not be discovered until the child is older or even an adult.
- What treatment is available? Treatment depends on the type and severity of the condition. Some children won’t require any treatment while others may need medication or heart surgery. There are also other new techniques and procedures that, in some cases, can be done instead of surgery.
Meanwhile, a ‘Scarred FOR Life’ public exhibition, in the UCS Waterfront Building, provides case studies of people who have survived congenital heart conditions.
John Richardson, national director of The Somerville Foundation, wrote for the gallery: “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.
“Without their scars, those featured in the exhibition would not be alive today. They have been Scarred FOR Life literally in that the scars themselves were a necessary part of life-saving cardiac surgery.
“Their condition wasn’t caused by lifestyle, smoking, diet, lack of exercise of any factor that they could possibly have controlled themselves. Congenital heart patients were simply born with their condition.”
One of the case studies, Julie Scanes, 56, of London, was diagnosed with a heart murmur at the age of 13 during a routine school examination. She did not undergo lifesaving surgery until she was 26 years old.
The mother-of-one said: “I was told that I would die by the age of 30 and was warned never to have children.
“So I am really grateful to be alive and it is really exciting to have a research centre like this to find new ways of helping those living with the condition.”
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