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 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 […]
Feb 22nd 2021 - World-first paediatric heart transplant technique boosts number of life-saving operations for children in the UK
Using a technique that ‘reanimates’ the heart outside of the body, Great Ormond Street Hospital, Royal Papworth Hospital and NHS Blood & Transplant expand the donor pool and perform six paediatric heart transplants in 2020 Great Ormond Street Hospital (GOSH) and Royal Papworth Hospital (RPH) have collaborated to introduce a world-first paediatric heart transplant technique […]
Aug 26th 2020 - Hope’s story
Told by her mother Caroline Hope was born on the 24th January 2020 with Trisomy 21. This brings with it a list of possible medical issues, including heart defects and so she was given many scans at a just a day old. The scans revealed that Hope had a partial ASD and it was left to hopefully […]
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 […]
Jul 21st 2020 - Miley’s story
Told by her mother Natalie We had been waiting for the birth of our daughter Miley for years. We had fertility treatment to help conceive her and we were so excited to meet her. I had no complications in my pregnancy and we were told at the scans that the baby was healthy. However, at […]
