Jun 22nd 2022 - NCHDA summary report
This important publication is of interest to anyone concerned about children with congenital heart disease. The National Congenital Heart Disease Audit collects and analyses data from all congenital cardiac centres that undertook surgery, interventional procedures (including electrophysiology) and antenatal detection in the UK and Republic of Ireland between 2018 to 2021. The complete summary report […]
May 25th 2022 - Dominic’s story – told by Dominic
Dominic Davies aged 21 tells the story of his heart condition, his heart transplant and why he supports the law change relating to organ donation Hearing that there’s something very wrong with your baby’s heart must be terrifying. That’s what my mum was told at her routine scan when she was 20 weeks pregnant with […]
May 19th 2022 - Lilly’s story
Lilly’s story told by her mother Kirsty Lilly’s heart was stable when she was born so was born in September 2020 and she was discharged by the Friday of that same week. Lilly has a very rare heart condition called dextrocardia where the heart is on the right hand side of the chest rather than […]
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 […]
Jun 23rd 2021 - Heart siblings impact study
Lizzie Bichard a cardiac nurse and one of the speakers at a recent CHF Coffee and Questions evening is conducting a study on the impact having a child with a heart condition can have on their siblings. This is part of her Phd, Lizzie interviewed some heart siblings last year, this is a continuation of […]
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 […]
