Your Stories
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 […]
