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 info@chfed.org.uk 

Feb 17th 2024 - Hannah’s Story

told by herself   My first month of high school, I was diagnosed with hypertrophic cardiomyopathy. The doctor didn’t know how I was still alive and said no more sports or dance. So I had lots of free time to watch TV and movies. It was my therapy and became my passion. I’ve earned my […]

Feb 16th 2024 - Richard’s Story

told by mum Chris   Our journey into the heart world started on 28th October 1985. Richard arrived at 5.45am. We hadn’t realised that the chaos he caused being born would follow him through his life! Brow presentation, which is undeliverable, but an absolutely super Senior registrar managed to turn his head allowing him to be […]

Feb 15th 2024 - Mercie’s Story

told by mum   In early pregnancy, I found out I was diabetic, I was put on insulin with regular 4 weekly check and scans with the diabetic nurses and consultants. At my 20 weeks scan the consultant saw something in the heart and asked me to go back 2 weeks later. Shortly after birth […]

Feb 14th 2024 - Ethan’s Story

told by Dad   Ethan was born 24/07/2007 and because I (Dad) was bourn with clicky hip we was expecting an appointment for a hip checkup which did come back as all clear when it took place, in the background what we didn’t know was the midwife that came to the house weekly found something […]

Feb 13rd 2024 - Sophia’s Story

told by mum Taz   Sophia was born on the 22 February 2016 I was absolutely delighted to hold her in my arms for the first time. Apart from slight jaundice and not feeding much and being very sleepy, she was perfect. The first week at home was intense, Sophia would cry all the time, […]

Feb 12nd 2024 - Kailer’s Story

told by mum   We found out about Kailer’s heart condition when I was 20 weeks pregnant with him, we were sent to Glasgow fetal medicine unit where we went under more intensive scans on his heart where he was diagnosed with transposition of the great arteries we were told to he would have to […]

Feb 11st 2024 - Bethany’s Story

told by herself   My entire life I prepared for a dance career and just entered a prestigious pre-professional program when I was diagnosed with hypertrophic cardiomyopathy at 17. At first, my heart thickness wasn’t concerning; over time, it’s significantly worsened. I’m on my second implanted defibrillator. I no longer dance. It’s tough seeing others […]

Feb 10th 2024 - Paul’s Story

told by Paul   I am not a role model! I am: A husband An employee A disabled network leader A good cook and baker Chaotic and untidy Loved by some, despaired of by others, disliked by some A scientist with an Arts degree An Entomologist with published poetry A patient with ultramarathons under my […]

Feb 09th 2024 - Cara’s story

told by mum Vicky Cara was born with Pulmonary Atresia in Sept 2018 and at her 20 week scan we were told there was something wrong with her heart because the pulmonary valve hadn’t formed properly. We were told Cara was eligible for fetal balloon valvuloplasty at 28 weeks pregnant. This involved a needle being […]

Feb 08th 2024 - Adam’s Story

told by Adam   I was born in 1986 at Scunthorpe General Hospital and was diagnosed with Aortic Stenosis at birth. Throughout childhood, I was under the care of Dr Parsons and Dr Evans for all my cardiac appointments. At aged 10, I had a balloon procedure and continued with yearly outpatient appointments at Scunthorpe […]

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