21 Dec 2020

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, […]