Children who have had heart surgery at the Evelina Hospital released 145 heart-shaped balloons on the riverside outside St Thomas' on Tuesday.
The balloons were released by members of Echo, a support group for families of children who have had heart surgery at the Evelina Children's Hospital. Later Echo members will meet MPs at a House of Commons reception on Valentine's Day organised by the national umbrella charity, the Children's Heart Federation (CHF).
Jo Wilson – whose 6-old daughter Cecilia was born with a heart problem – says: "When you say ‘heart disease', most people think of an overweight middle-aged man, not a new-born baby. Yet every year 5,000 children in the UK are born with a heart problem. These children and their families have to face the battle of coping with a heart defect – which can sometimes include years of surgery. I will be going to the House of Commons to tell MPs what it's like to live with heart disease and I hope that they'll remember our stories in the future, so heart children get the best care and support."
The Every Heart Child Matters reception – during Children's Heart Week – will raise awareness of the needs of heart children and their families at every stage, from pregnancy to young adulthood.
One in 145 children has a heart condition, either from birth or brought on by childhood illness. Many congenital heart conditions are incurable, surgery may relieve problems but treatment is long-term palliative care. Heart children can face major operations, frequent hospital visits, daily blood tests, large amounts of medication, extreme tiredness and serious disruption to their childhood. They and their families also live with the knowledge that their lives may be cut short, sometimes very abruptly.