May 18th 2022 - New study on the benefits of exercise for children with single-ventricle heart conditions
A new study in Australia and New Zealand is investigating the benefits of exercise for children with single-ventricle heart conditions. The research is being conducted by cardiologist Associate Professor Rachael Cordina. “Emerging research is now suggesting that exercising is even more important than in the general population for people with the most complex types of […]
May 17th 2012 - Think HEART Campaign
The Children’s Heart Federation launched a new national information campaign directed towards parents and medical professionals. The Think HEART campaign aims to empower and inform parents, as well as better educate medical professionals about the key early signs of a possible heart problem in children. There are five easy to spot signs to help parents […]
Oct 05th 2021 - SHARE Study – Impact of COVID19 on the lives of children with heart conditions
How has COVID19 impacted the lives of children with heart conditions and their families? The SHARE study is looking at the impact COVID19 has had on participants lives regarding physical (exercise, eating, sleeping) and emotional (anxiety and mood) wellbeing as well as distress experienced. The survey includes two open ended questions on reflections on positive […]
21/12/20 - Impact of COVID-19 on patients with congenital heart disease
A summary of international papers researching the impact of COVID-19 on patients with congenital heart disease. Download here. If your child is unfortunate enough to text positive for COVID-19 please inform their cardiac team so their data can be added to the UK study.
Aug 13rd 2020 - Can you help us improve the quality of services for congenital heart disease?
The Children’s Heart Federation are involved in a new study called CHAMPION to try to improve how the quality of services for congenital heart disease (CHD) is measured and reported in England. We want to hear your views on what makes services good quality, which includes understanding how COVID-19 has affected your experience of health […]
Jun 15th 2020 - Riley’s story
Told by her mother Chloe. Riley’s condition wasn’t picked up at ante-natal scans or after birth. When she was six and a half weeks old we took her to hospital for the first time because we were concerned about her being sleepy and refusing feeds. It was the end of January 2020. The doctor on […]
Jun 15th 2020 - Sebastian’s story
Told by his mother Julie. My son Sebastian was three months old when doctors discovered he had two holes in his heart. In December 2016 Sebastian had became very ill and after collapsing at home was rushed by ambulance to our local hospital. He was being treated for bronchiolitis that had developed from a bad […]
Jun 12nd 2020 - COVID-19 advice: practical guidance for patients, parents, charities and support groups from the BCCA
The BCCA (British Congenital Cardiac Association) has updated its guidance on COVID-19 for people with heart conditions. The guidance includes information for people with congenital heart disease, topics covered include COVID-19 advice for vulnerable and extremely vulnerable groups, returning to school and hospital care. Dated 11 June 2020. A pdf version of the guidance can […]
Feb 20th 2020 - Rico’s story
My name is Kirsty, I am a mum to a handsome little boy who was born with congenital heart block. In my 28th week of pregnancy I was told that my baby had a serious heart condition and would possibly not survive; he would need surgery the minute he was born. When Rico was born, […]
