Connor’s Story

My name is Connor and I have lived with a heart condition all my life, I was diagnosed with Hyperplastic Left Heart Syndrome (HLHS) a condition in which the normal blood flow to the heart is affected, the left side of my heart was never formed properly and was unable to pump blood through my heart as a normal person would.

Hyperplastic Left Heart is a congenital heart defect this simply means that the left ventricle did not form properly and was too small to allow blood flow through it, a baby with a fully working heart will have unoxygenated blood (blue) pumped from the right side to the lungs then the left side will pump oxygenated (red) around the body.

I was born on the 11th September, 1997, at 09.45am weighing 8lb 16oz at Watford General Hospital.

After my birth all seemed to be well apart from a slight blue tinge to my lips, mum was kept in due to high blood pressure, I apparently could not settle through the night and did not feed well, the only way I could settle was to be perched up on mum’s shoulders.

The next morning dad was at the hospital bright and early to take me home as he laid me out on the bed to change me a midwife just happened to walk passed and noticed I was breathing deeply through my stomach she then asked a doctor to check me.

My parents were taken off to a side room after a few hours of waiting they were told that I would need surgery and it would need to be done as soon as possible, the race to find a hospital that was able to do the surgery was on, a bed became available at the Royal Brompton I was taken by ambulance blue lights and a police escort to London.

On arrival my parents were taken into a side room and told I would be going to theatre first thing Saturday morning, so at 48 hours old I was having my first open heart surgery, this would allow my good pump to be used to pump blood around my body.

I was home within two weeks but still unable to feed myself so I was being feed via a Ng tube which I learnt very quickly how to pull it out in the middle of the night to the despair of my dad who would then have to take me up to Watford General Hospital to have a new one fitted, in the end they showed him how to replace it himself.

Three months later in December 1997 I had my second operation, this was to place a shunt between my pulmonary artery and the main vein in my neck and this is to enable unoxygenated (blue) blood to flow to my lungs.

At this time it was my fifteen minutes of fame sky news with my uncles dressed as tele tabby’s and I’ve still got the video as blackmail..


My third and final operation was the Fontan procedure this was in August 2002 at the age of 4 years and 11 months; the surgeon connected my pulmonary artery to the lower vain in my body returning unoxygenated blood (blue) from the lower part of the body to my lungs.

I am happy to say that all three of my open heart operations were a success,  I am not saying they were plain sailing as the 3 months I spent in hospital after my second would show I spent too long on the ventilator and a brought on septicaemia for good measure.

However, through all my trips and stays at the hospital I always had my family around me to make me feel safe and sound even this date, I have amazing support from my friends and family and I always have someone to talk to, if ever I am unsure about things myself.

During my operations, my family were introduced to Left Hearts Matter later to become Little Hearts Matter, they were an amazing support to my family and still are today.  I am still part of LHM and they are still offering the same amazing support and guidance as they did when we first meet them.

Every year they hold amazing workshop days where we all meet up and I get to see other children and young adults who have grown up with the same condition as me.  It is great because I get to talk to them and share the different challenges we face and how we have grown up to be different to the other children we grew up with.

Growing up was difficult for me at times but I was always treated the same and that is what was important. The teachers at my school were always very helpful and understanding if there were some things I just could not do, such as large laps around a football pitch or rugby.  I never felt different at school I did have a good life at school, both primary and secondary.

I also have an amazing group of friends who are always looking out for me when we are out they are very supporting we have an amazing time together and always make sure that what they do I can do as well.

The way I feel today is happy, healthy and proud to be able to say, I do have a heart problem but I don’t let it affect me, I live my life the same way as everyone else my story is just like the other people with heart problems I’m a little bit tweaked and changed, re-plumbed as I like to say but I don’t see any difference I’m just happy to have the people and the support around me, as we know: it’s half a heart not half a life.