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 […]

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 […]

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 […]

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 […]

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 […]

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, […]