Congenital heart disease covers a number of heart conditions or defects which develop before a baby is born. Conditions can include:
aortic stenosis - a narrowing of the aorta
small ventricular septal defect - a hole in the wall between the ventricles
pulmonary vein stenosis (PVS) - a blood vessel blockage which causes blood to flow back from the lungs to the heart
tricuspid atresia - a missing or underdeveloped tricuspid heart valve
Our congenital heart disease (CHD) centre is one of the largest in the country. We care for patients from pre-birth (in our fetal cardiology unit), through childhood, to adults in our adult congenital heart disease (ACHD) unit.
This video is by Lynda Shaughnessy, a clinical nurse specialist in adult congenital heart disease (ACHD) and transition. She explores how a normal heart develops. She also looks at some of the conditions which can occur if development is damaged or stopped and how they can be treated.
Tricuspid atresia is a type of congenital heart disease. In this short video, a patient shares her experience of growing up with this condition and the care she's received at Royal Brompton Hospital.
Find out more about congenital heart disease and how it has been treated at Royal Brompton and Harefield hospitals, by some of our patients.
These stories come from patients or parents of patients who have been treated for some form of congenital heart disease (CHD) at the Trust.
At the Trust, we treat over 12,500 CHD patients. The stories below are just a very small number of the many patients who have received excellent care at the Trust.
- Alexander Ellis - Alexander Ellis was diagnosed with a serious form of congenital heart disease when his mother had a routine 20-week scan at St George’s hospital in Tooting. Consultant fetal cardiologist Dr Julene Carvalho from Royal Brompton picked up an abnormality called double outlet right ventricle where the heart’s two great arteries both arise from the right ventricle.
- Sophie Lyons - Sophie Lyons was born at Princess Alexandra Hospital in Harlow and although she was quite blue in colour, her heart condition wasn’t picked up. Sophie says: “A friend of my mum’s, who is a midwife, saw me at home a couple of days later and thought that something was wrong, so I was taken to see my GP who identified a heart murmur.”
- Lucy Hijmans - When Lucy Hijmans was born, her heart was only able to deliver half the oxygen she needed and she could only just breathe for herself. Following an early pregnancy scan, her mother’s obstetricians referred her to Dr Julene Carvalho, a consultant cardiac foetologist at Royal Brompton, who diagnosed her heart problem as transposition of the greater arteries, which is a type of congenital heart disease.
- Sarah Howell - Sarah Howell, 34, has been under the care of Royal Brompton since birth. She was born with tetralogy of Fallot, a congenital condition causing a number of structural abnormalities in the heart. These defects mean that oxygenated and non-oxygenated blood mixes, causing the overall amount of oxygen in the blood to be lower than normal.
- Alexander McPhee - The birth of Alexander McPhee, a beautiful baby boy weighing a healthy 8lbs 13oz, was a cause for much celebration. Until his mother Libby received the type of news that every parent dreads.
- Tracie Giddy - Now aged 35, Tracie Giddy has been treated at Royal Brompton for her heart condition since she was two days old. Tracie was diagnosed with left atrial isomerism and double-outlet right ventricle, an extremely complex heart condition.
- Samuel Liu - Samuel’s mother Wai discovered that her son had a complex heart condition when she had her 20-week scan during pregnancy. Wai was immediately referred to Royal Brompton where she was seen by fetal cardiac nurse specialist Susanna de Sousa and consultant fetal cardiologist Dr Julene Carvalho.
Patient information leaflets
Below are patient information leaflets that will be useful for patients with congenital heart disease and their parents.
Cardiac catheterisation (for children) - July 2015 (1.33MB)
Paediatric critical care - information for parents and carers - Royal Brompton Hospital - September 2014 (pdf, 506KB)
When your child goes home after heart surgery - Royal Brompton Hospital - July 2016 (pdf, 487KB)
After your heart operation - Royal Brompton Hospital - January 2018 (pdf, 2.17MB)
Innocent heart murmur - July 2014 (pdf, 370KB)
Adult congenital heart disease centre and centre for pulmonary arterial hypertension
Royal Brompton Hospital, Sydney Street, London, SW3 6NP
Telephone: 020 7351 8600/8602 or 020 7349 7748
PAH office: 020 7351 8362
Out of hours emergency: 020 7352 8121 and ask for the on-call ACHD team