Eoin’s Story

Eoin is one of our amazing young adults and this is his story

My name is Eoin Bogue, I’m a 17 year old heart warrior and this is my story…

On the 10th of November 2000 I was born in The Royal Jubilee Hospital, Belfast weighing 10lb 6oz, I was the picture of health but that mattered nonetheless.  I was diagnosed with a rare form of complex congenital heart disease in the form of a Uni-ventrical Heart with Pulmonary Stenosis and pulmonary hypertension by Dr. Brian Craig.  To put this into a language most people understand means that I have one ventricle missing in my heart and my pulmonary artery and vein are back to front.  I have also high blood pressure.   This meant that my blood could not be oxygenated properly therefore causing me to have exercise intolerance, to tire easily and to experience breathlessness a lot of the time. This was the start of having to take various medications to stabilise my condition.

I had my first major heart surgery (half fontan) at the Royal Belfast Hospital for Sick Children when I was 5 and a half months old.  Mr Gladstone was the surgeon who I believe was a very experienced and skilled man.  I don’t remember him as he retired a couple of years after my surgery.   I was a very ill baby at that time and I was an inpatient in Clark Clinic for almost 5 weeks. My mum and dad stayed that whole time with me too. Following this surgery I was reviewed regularly and I had several investigative surgery procedures to see how my heart health was.

I went to playgroup when I was three and I was supported with an assistant.  I started primary school at 4 and again I had a classroom support to make sure I was ok.  It was at Primary School that I first realised that I was perhaps a bit different from other children. I could not keep up with my classmates out in the playground as I became breathless easy.  I had poor co-ordination and therefore I was not good at physical activity.  This excluded me from taking part in competitive games at school and with my local GAA club.  Winning is important and therefore only the best are chosen when in competition.   I struggled with this initially but over time I accepted my limitations.

Academically I struggled at primary school as I lacked concentration and tired easily. I moved to Secondary school and somehow ended up in the top band to my surprise.  I have since obtained 9 GCSE’s with good pass grades and I am now going to South West College to undertake a level 3 extended diploma in computing.

When I was thirteen Dr. Craig decided that I should undertake a stress test to ascertain how I really was.  Results were not great so it was decided that I should have full Fontan Surgery.  At this point, children’s heart surgery was no longer taking place in the Royal Belfast Hospital for Sick Children so Dr. Craig decided that my case should be discussed with the surgeons in Our Ladies Children’s Hospital in Dublin with a view to carry out the Surgery there.   They declined to carry out my surgery as they felt my condition was too complex.  It was decided to approach the Surgeons at Birmingham Children’s Hospital.  They agreed to perform it.   So on a cold February day we packed our bags, said goodbye to family and friends and headed off to Birmingham …for how long we didn’t know.  Luckily my Surgery happened within a week of arrival February 24th and for what was to be a 4-6 hour surgery ended up almost 12 hours.  The full Fontan had to be done from the start. A scary time for my parents and wider family ….. thank goodness I was unaware! Thanks to Mr Stumper I am about to tell the tale!   I spent one long month in Birmingham Children’s … visitors from home and get well cards kept me and my parents going and then at last I got the green light to go home. I remember being welcomed home by family and friends and it was all going good for a day or two until I woke up very early in the morning pale as milk and feeling sick as a dog, I remember dad woke up and got me a drink which didn’t stay down and it was alarm bells from there so it was a early morning trip to the Royal Belfast Hospital for Sick Children to see what was wrong where I spent another long month going through a couple of more procedures before recovering. Once medication was sorted and my health stabilised, life began to return to normal and has went pretty smooth since.  Being able to go outside without discomfort and even kick a football around was pretty amazing. I am Warfarin dependent now which does cause difficulty some of the time however overall am managing OK.   I will have to take medication for the rest of my life but I will not let it hamper what I do.

Around 2013 I started to get involved with Children’s Heartbeat Trust and it was exactly what I needed.  I have attended many family days out with other heart families and I have taken part in activities that I normally wouldn’t dream of doing.  The Summer Blast residential have been fantastic – each year better than the previous and I have made great lifelong friends.  It is good to see the human side of the consultants and Clark Clinic staff in non medical settings. Children’s Heartbeat Trust, hats off to what you’ve done for us heart kids – your foresight has made our lives much better.  I am now moving to the 17 plus group called Tribe and I really look forward to new challenges and opportunities that this will bring.  So now that the new family support worker for young people has joined the team – get planning…we are a daring bunch!

I am so excited about life and my future.  My heart condition is part of me but does not define me or prohibit me. I can be whatever I want to be. Don’t stand in my way – I am formidable. I am not strange, I am UNIQUE !