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, […]
Oct 05th 2023 - Lacie’s story
Lacie’s story told by her mother Kayleigh At my twenty-week pregnancy scan I was told that Lacie’s heart hadn’t formed properly, this was a terrible shock but it gave me time to prepare for her arrival with the knowledge that she would probably need surgery in order to survive. Lacie was born early after exactly […]
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 […]
Jul 11st 2023 - Activity days in the North East and North Cumbria
Are you a family living in the North East and North Cumbria? Do you know a child or young person living with congenital heart disease? Join CHF for some interactive day of fun and learning! Scan the QR code or click on the image to find out more
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 28th 2023 - What we go through every day
Teenager signs a powerful message to other young people with heart conditions As heart month draws to a close a teenager from Crewe has sent out a powerful message in British Sign Language (BSL) to other young people with heart conditions. Robert Allen gives an expressive and emotional performance signing the words of Fight Song […]
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 […]
Feb 02nd 2023 - On His Majesty’s Congenital Heart Service
As part of CHF’s mission to ensure that those affected by congenital heart conditions, and childhood acquired heart conditions, are recognised, supported and have the same opportunities as everyone else, CHF’s Chair and Vice-Chair of Trustees have engaged with the British Cardiovascular Society for many years. Working with other patients, and ably supported by others […]
