Feb 05th 2024 - Charlie’s Story
told by Charlie Hi! I’m Charlie and I have Focal Atrial Tachycardia, a defect in my heart’s electrical system causing an irregular heartbeat. Untreated, my heart goes out of rhythm multiple times a day. It’s a very annoying (benign) condition. Having a quirky heart meant I learnt to work with my body. Professionally, I’ve […]
Feb 04th 2024 - Kodi’s Story
told by mum Lynsay At 12 weeks of pregnancy I was told that the baby was very poorly and the fluid around the baby was too much and was pressing down on the baby’s chest and head, the hospital was advising me to terminate the pregnancy as by the time I got to the […]
Feb 03rd 2024 - Mary’s Story
told by mum Elizabeth Before having a child with a hole in the heart, I never imagined the knock-on effects. Who would have thought that it would result in feeding her through a naso-gastric tube or that it might cause extreme reflux and, as a result, it took two people over an hour to […]
Feb 02nd 2024 - Jaxon’s Story
told by his mum Amanda Jaxon is about to turn 7 next month on the 2nd of February, he was born with Ebsteins anomaly, we didn’t know until he was 6 hours old. At 4 days old Jaxon went into multi organ failure and he was given 24 hours to live. We were lucky […]
Feb 01st 2024 - Lilygrace’s Story
told by mum At my 20 week scan, I was told by the sonographer that there was something wrong with my baby’s heart and we had to go back for further scans by cardiology and fetal medicine. They confirmed that my baby has the very rare Heterotaxy syndrome right atrial isomerism (two right atria, […]
Aug 05th 2023 - Fundraise for CHF with the Inflatable 5K
Take part in an Inflatable 5K event to raise money for CHF’s new Exercise Programme The Inflatable 5K events are just the first steps you can take toward supporting and fundraising for the new CHF Exercise Programme. The world’s largest and best fun run obstacle course the ‘Inflatable 5K’ has got even bigger and bouncier […]
Mar 28th 2023 - Family day at Whitemoor Lakes May 20th 2023
Do you know a child with a heart condition who loves adventure and challenges? Then they are invited to attend the CHF activity day on May 20th at Whitemoor Lakes, near Lichfield and can bring along the whole family, (two adult parent or carers plus siblings). There will be a range of […]
Feb 08th 2023 - CHF are recruiting for three new steering groups
Help CHF and children with heart conditions nationwide by sharing your experience in one of our steering groups. CHF are aiming to recruit for three new steering groups that will advise on issues relating to children with congenital or acquired heart conditions through lived and professional experience. We want to hear from: Young people with […]
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 […]
