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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 Smith’s Story
Georgina was diagnosed with Ebstein’s anomaly in 2009 and will need a valve repair at some point. Georgina is affected by her heart condition everyday and gets breathless, tired, blue and puffy around her eyes and mouth. She needs to be reminded to take breaks as she doesn’t understand her limits yet. Her family heard [...]
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 [...]
Aug 22nd 2011 - Freddie’s Story
Soon after he was born, I noticed that Freddie’s fingers and toes looked a bit blue. I mentioned it to the midwife, but she was quick to dismiss it and so I thought nothing more of it and took Freddie home. However, Freddie started to lose weight quickly and he wasn’t breast feeding properly. Alarm [...]
Aug 22nd 2011 - Laura’s Story
Laura loves to read Rosie & Violet Our daughter Laura, aged six, had open heart surgery last December to repair a narrowed valve and a hole in the heart. We received a call from the hospital one Friday to say that Laura’s operation was due the following Tuesday – just four days notice! Luckily, we [...]
Aug 22nd 2011 - Lola’s Story
Lola was born on Christmas day last year. Ross and I were absolutely over the moon and so excited to be first time parents. It wasn’t long though before I began to worry that there might be something wrong with Lola because she wasn’t feeding very well. By the time she was three weeks old, [...]
Aug 16th 2011 - Maia’s Story
By Maia One day in October I was at school in the yard playing with my friends when I bumped into a boy and banged my head on the ground. I had to go to the medical room and I was sick once in there. My Mum was at the door to take me to [...]
Aug 03rd 2011 - Grace’s Story
The day after Grace was born, I began to notice that she was breathing quite rapidly and that something generally didn’t seem right. When she was four days old, she was still panting, couldn’t feed properly and kept falling asleep when I tried to breastfeed her. After some persuasion, I finally managed to get a [...]
Apr 13rd 2011 - Cameron’s Story
It seemed such an appalling defect to have that we simply didn’t expect Cameron to grow up at all. We didn’t find out until after he was born – it was difficult to persuade our GP that there was a problem, and I had to ask my sister, who works for the NHS, to come [...]
Jun 13rd 2010 - Daisy’s Story
We lost our little girl when she was just over a year old. When we discovered she had a heart problem, we thought it was the end of the world. Through our support group we met two other families whose children had been born with Truncus Arteriosus and are now fine. So when Daisy had [...]
Jun 13rd 2010 - Ryan’s Story
Getting Ryan into nursery was really hard. He was born with Truncus Arteriosus, and had to have two valves put in his heart. We all got over it alright – of course we were upset to start with, but once he’d had his second operation to put a valve in to replace the leaking one [...]
May 13rd 2010 - Emma’s Story
Fifteen years ago, I was expecting my second child and went along for a scan at about 22 weeks. I remember that the echo machine was new, and being demonstrated to some pupil midwives – I was quite happy to show off my unborn infant, but it was irritating that I couldn’t see the screen. [...]
Apr 18th 2010 - Hugo’s Diary
by Claire Reece. Claire Reece documents her experiences of caring for her son Hugo James, who was born with Tetralogy of Fallot. 18/04/2010 Hugo was awake at his usual time of 5.20am, he has been in a very chatty mood but John and I are knackered!! He has been really good today and a [...]
