Me (Catherine) and My CHD (Truncus Arteriosus)

England

Hi! My name is Catherine d’Alquen I was born near the end of February 1984. It wasn’t until my mum, Carol Coates took me to see the G.P for my 6 week check-up that he found something not quite right with me. A few days later my G.P at the time Dr. Garnet of Filey surgery referred me to a specialist team at Scarborough Hospital where my mum and dad (William Coates) took me to see the Cardiologists Dr. Stanton and Dr. Dickinson. While I was there they did some further tests on me and these tests showerd that I had a congenital heart defect known as Truncus Arteriosus. They quite simply told my parents part of my heart was under developed, of course my mum and dad had been devastated and had never heard of any of this before, and they wanted to know: how it would affect me? What would happen? I am not sure what they must have been thinking of as they had never heard of a Congenital Heart Defect/Disease (CHD) or even the name of it.

The question my parents asked was: “What is it? Truncus Arteriosus is characterised by a large Ventricular Septal Defect (VSD) over which a large, single great vessel (Truncus) arises. It occurs when the two large arteries carrying blood away from the heart doesn’t form properly and one large artery is present instead. This single great vessel carries blood both to the body and to the lungs. This artery (the Truncus) sits over a large opening or hole in the wall between the two pumping chambers known as Ventricular Septal Defect (VSD). As you can imagine this was rather a lot for my parents to take in let alone understand.

A few weeks later I was taken to a hospital in Leeds called Killingbeck Hospital (famous for its heart surgery, was located in the area until it closed in 1998, when services were transferred to the new Jubilee Wing at Leeds General Infirmary) and saw a surgeon there called Dr. Duncan Walker who would perform my first open heart surgery. I was now going on for 7 months old. Duncan Walker explained that the operation had only been done in America before and some were not successful but despite all this my parents took the chance.

My first open heart surgery was on the 21st November 1984 it took 8 hours. I was the first baby in England to survive open heart micro-surgery operation at the age of just eight and a half months old. I am known as the miracle baby and went down in medical history.

When I reached the age of 8 years old, I needed another open heart operation as the conduit had started to fur up and needed to be replaced, at the time it was quite a straight forward operation. We went back to Killingbeck where Duncan Walker who was now a Mr. Duncan Walker did my second operation. All was fine and I left 10 days later. However, there was a problem and I had to be rushed back to Killingbeck – I needed to have a cist removed that had grown above my operation scar, I went back into theatre to have it sorted out. There was a lot more to come and nothing could of predicted what would of happened. I started to get infections and was put in a side room, just a little bigger than a box bedroom, where I spent the next three and a half months in that one room with just a TV! I was not allowed out of the room as my immune system had shut down and I would pick up the slightest bug or infection. I do remember FOUR doctors all sitting on my chest as I began to haemorrhage very badly from my scar which had been left open due to the infection. The only way I can describe it is like rice krispys popping. My weight had plummetted and I now only weighed four stone, I was given ensure to build me up. I was also put on morphine and other antibiotics to try and kill off the infection. I was now recieving medication which was being slowly put through my body for twenty-two hours a day.

On my 9th birthday so all the nurses and doctors got me a cake, and I was allowed out of the room just for an hour. I had now been in hospital for three and a half months when I was transferred back onto ward 7, which I still remember, and I started to help look after a two year old boy called Nathan Dobson. Nathan was a very sweet little boy and was only allowed two biscuits a day but he could never pronounce it used to call them ‘the spice’ and if he wanted a lolly it was loll.

I had been in hospital for four and a half months when I was well enough to go home.

My mum and dad wanted me to have a normal school life, so I went to mainstream school instead of attending a specialised school. I hated a lot of my time there due to bullying which started to get worse by year 10. I was bullied not just because of my heart condition but also by the way I looked. I did the only thing I could do and that was to hid my self away. When I was in year 10 I started to say I didn’t feel well enough to go to school so that I could avoid the bullies, I would try anything so that I wouldn’t have to go to school. I did go back for my parents, as I did not want to get them into trouble. I could never tell the teachers as they would never have believed it. I needed witnesses and no one would stand up for me, I then started to make myself ill by throwing up and eventually I got very bad depression. I was sixteen when took my exams and left school. I only went to for my exams.

Now in 2010 I am happily married to an amazing guy call Terry, who is my best friend, lover, husband and enemy all in one but I love him. Terry loves me for who I am and that is one of the most important things I have learnt through bullying. I have my dogs, Sandy and Sheppy and also a cat called Alfie and they are all I need, well of course my husband and friends. Terry looks after me the best he can and has been there for me since my mum died three years ago. My mum and grandma were the ones who stayed with me in hospital as my dad looked after my two sisters. My biggest supporters have both gone and I am very thankful for Terry.

I left Filey, where I grew up, with terry to live in Gloucester so that he would be near to his dad Charlie and it’s the best move I have ever made.

At the moment I am waiting for a third operation; a repeat of the second one, fingers crossed that it will not be four and a half months like last time. I will be keeping people undated about it as and when I can via my group on facebook (I have my own discussion box for it). My motto and group is ‘CHD and Proud To Be – Who knew we would be special‘. Please join if you wish too.

I run and part own a online radio called Crazy Radio and support CHD-UK. I hope to spread awareness via my radio station if I can.

Wrote by Catherine D’Alquen
February 2010

Catherine has kindly given permission to CHD-UK to use the photographs on this page.