Your Stories

  Welcome to the Children’s Heart Federation Personal Stories page.  Here you can keep up to date with stories involving the stars who support CHF and the families that use our services. Please be advised that some case studies may touch on very sensitive issues and express views that may not necessarily be shared by other parents or by CHF, nevertheless we value comments and thank everyone willing to share for their honesty. If you'd like to tell us your story contact 

Feb 27th 2024 - Freya’s Story

told by mum   Our little girl Freya was born on 27 Feb 2021 with pulmonary atresia/Ventricular Septal Defect (VSD). She is our absolute hero. When Freya was first born things looked quite bleak, she had no central pulmonary artery and the branch arteries to her lungs were so small. We were told there might […]

Feb 26th 2024 - Nesta’s Story

told by mum Olivia   The CHF Think Heart campaign really hit home because we had no idea of our son’s critical heart condition. I had a completely healthy pregnancy; I attended my midwife appointments and the anatomy scan. We were told his heart was healthy and nothing in the scans raised any concerns. I […]

Feb 25th 2024 - Phineas’s Story

told by mum.   Phineas (Phin) was born with an incredibly complex heart, among his defects he had several holes, his left lung was only connected via a tiny conduit and his pulmonary artery was missing. If the sonographer hadn’t picked up on his defects at our 20 week scan there is a chance he […]

Feb 24th 2024 - Daniel’s Story

told by mum At 17 I found out I was pregnant, on the 3rd March 2016 myself and my mum went to my 20 week scan, I was so excited for my mum to see her first grandchild. The sonographer was doing all the usual checks then kept going back to his heart. That’s when […]

Feb 23rd 2024 - Kieran’s story

told by mum   Kieran was born on the 28th of January 2011 as a healthy baby boy, was discharged from hospital at 2 days old. A couple of days after being home we noticed Kieran spent most off his time asleep, he was struggling with his feeding taking over an hour to get a […]

Feb 22nd 2024 - Pippa’s Story

told by mum   Pippa was always our miracle baby. We needed IVF treatment to conceive our Son Rex, so when we found out I was pregnant just before his first birthday, it was the best surprise. I had a relatively straightforward pregnancy and was told everything was fine at my two 20-week anomaly scans. […]

Feb 21st 2024 - Aaliyah’s Story

told by herself   I have always been interested in supporting young people since I was a teenager and received my Dilated Cardiomyopathy and Hypertrophic Cardiomyopathy diagnosis. I was 12 when I started to become ill with a virus that looked like tonsilitis, which turned into pericarditis and myocarditis – inflammation of the heart lining […]

Feb 20th 2024 - Ezra’s Story

told by mum   After discovering our first born son had Supraventricular Tachycardia (SVT) at just 10 days old, we never imagined our third child, also a boy, would be delivered 3 weeks early by an emergency caesarean section requiring general aesthetic with the exact same condition. Not that going through any scenario with a […]

Feb 19th 2024 - Emily’s Story

told by mum   Emily Falcon was born in 1982 and at seven weeks old, she had a heart attack that destroyed forty percent of the left side of her heart and was diagnosed with the cardiac condition, ALCAPA. This was her entry into a world of multiple cardiac procedures, surgeries, and hospitalizations, and a […]

Feb 18th 2024 - Sebastian’s story

told by mum Julie   Sebastian was three months old when doctors discovered he had two holes in his heart. In December 2016 Sebastian had became very ill and after collapsing at home was rushed by ambulance to our local hospital. He was being treated for bronchiolitis that had developed from a bad cold, but […]

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