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 click here to find out more.

May 14th 2013 - Layla’s Story

When Layla was born we thought we had a healthy baby girl, but as months passed she became very poorly and after months of doctors and hospital visits she was finally diagnosed with a very rare heart condition called Cor Triatriatum.   Our world was turned upside-down and inside-out; she was only one,  just a […]

Mar 11st 2013 - Our Brave Son Lloyd’s Journey

Our son Lloyd is 15 and has always been a healthy child apart from suffering from ADHD, ODD & some Autistic tendencies. On the 20th January 2013 Lloyd complained of a headache so we gave him paracetamol and he went to bed during the night he started vomiting and the next day got diarrhoea.  I rang our […]

Nov 01st 2012 - My Two Heart Boys

By Joe & Jamie’s mum Catherine Joe was born by natural delivery and all though premature by 5 weeks he weighed in at a healthy 6lb and was completely fine, we were sent home a couple of days later. Joe was well for the first few weeks then developed a cold which didn’t clear up so I […]

Oct 02nd 2012 - Hamish’s Journey

By Lorraine; Hamish’s mother. Hamish was born on 28/11/06 after a normal pregnancy, a typical blue baby.   He was diagnosed at Bristol children’s hospital when he was 2 days old.  He underwent a valve repair via balloon at 2 days and thrived! When he was 10 months old I ran the Bristol half marathon in recognition of […]

Sep 20th 2012 - Jack’s Story

By Jack’s Mother Wendy “My pregnancy was normal, nothing came up at the scans. The birth was normal and all checks carried out to Jack when he was born came out fine. In hindsight there were early warning signs that if known about could have raised the alarm, such as at day 5 when he […]

Aug 28th 2012 - Alfie The Brave

By Jo James Alfie is my third child and we found out at our 20 week anomaly scan that Alfie was going to be poorly.   Nothing prepares you for that and the journey that follows. I developed pre-eclampsia which added to his complications and he needed to be delivered by Cesarean-Section.  He was born on the 11th […]

May 22nd 2012 - Georgina’s Story

Alex Smith’s daughter Georgina was born with a heart problem which went undetected until she was almost two and a half. Georgina’s condition was missed at the 20-week scan during Alex’s pregnancy as well as on other occasions where Alex took Georgina to see medical professionals due to her concerns about Georgina’s health. Georgina was […]

Aug 22nd 2011 - Harry’s Story

  Harry’s birth and treatment in France By Julian Spurling (Harry’s father)   We first found out about Harry’s heart condition when he was five days old whilst Lulu was still in hospital. He was diagnosed by a paediatrician at the hospital in France where we were living at the time. The paediatrician referred us […]

Aug 22nd 2011 - Neil’s Story

My heart defect (a Ventricular Septal Defect or VSD for short) was detected very soon after I was born, just before Christmas 1975. My first memory of my heart condition is actually of the operation itself, which happened in the summer of 1977 – I have two clear memories: the first is being woken by […]

Aug 22nd 2011 - Katherine’s Story

by Rachel Perkins (Katherine’s mum) Katherine was born by emergency caesarean two days before her due date, scoring 10s all the way on the Apgar scale (a test done soon after birth to check the health of the baby). It wasn’t until 21 hours later that a midwife asked if she could just hold her […]

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