The Stories My Parents Tell Me About The Whole Experience Scare Me – Thomas Messer
Thomas Messer is a 19 year old musician from Scotland with half a heart, or Hypoplastic Left Heart Syndrome (HLHS).
Over the last 19 years Tom has learnt to live with HLHS and all the challenges it has presented to him. His mum, Carole, said: “He copes really well and never complains. Transition has not been easy for Thomas as there does not seem to be a great deal of support for his condition where we live in Scotland near Aberdeen. “
At only 16, Tom passed his driving test after reading an article about the Motability scheme in the Little Hearts Matter magazine. The Motability scheme has helped Tom with his independence and enabled him to follow his ambitions, including owning a number of VW Beetles. VW Beetles have been a great love of Tom’s since seeing a Herbie film when he was nine years old. His collection has grown to three, one which he can now drive.
Tom is very fond of playing the guitar, and has been doing so since the age of eight and for two years he has played in his band ‘Ferus Cane’. The band started at the end of June 2013 by Thomas Messer and Ryan Thain.
Classic rock and blues covers have been the bands main focus but more recently they have started writing their own material. In October they plan to go in to the studio and record their first EP.
Ferus Cane’s biggest achievement to date is when they supported Big Country in February 2015. In November they will be supporting The Blockheads. You can find out more information about Ferus Cane by searching for them on Facebook, Twitter, Soundcloud, Instagram, Pinterest, and YouTube or by visiting www.feruscane.com.
The crack of dawn on June the 12th 1996 was when I was born. My mum and dad were completely unaware of the trouble that I, small and helpless, was about to cause. All the scans which my mum had throughout her pregnancy had shown no abnormalities. Everyone thought I was going to be perfectly healthy. That was the furthest thing from the truth.
Hypoplastic left heart syndrome (HLHS) is a life threatening condition which means the left ventricle of the heart is only partially developed and does not work at all. If a new born baby is not operated on it will die within days, even hours, of birth. I suffer from Hypoplastic left heart syndrome.
I was born early in the morning in Aberdeen Hospital. My birth was like any other: there were tears and screaming but I came out wailing, right on queue. Mum and dad were overjoyed. Their son was here safe and sound. The Messer family was complete. It was about five hours after the birth that things started to take a turn for the worse. I started to have erratic breathing, my chest was lurching like a rough sea, my tiny fingers and toes started to turn blue.
My mum and dad were given the choice to turn off the life support machine and stay with me until I died or put me through a series of three operations to temporarily fix the defect and give me a chance at life. My mum was always certain about putting me through the operations; she didn’t consider leaving me to die. The life expectancy after the first procedure was 50/50; it was a relatively new operation in 1996. I had my first operation after being flown down to Birmingham at two days old and my second op at six months. Being so young it is impossible for me to remember what happened. In a way I’m glad because the stories my parents tell me about the whole experience scare me. They remember the deafening screams; and repetitive ‘beeps’ from the hospital machines. I would hate to be in my parents’ situation. Having to watch a love one so close to me just lie there. Completely isolated from the world. I couldn’t look at their body spilling with wires and lying in the metallic mercy of the machines keeping them alive. My mum’s most poignant memory is the noise from the ambulances. They haunt her to this day. If she hears one it sends a shiver down her spine.
My third operation was again, at Birmingham Children’s hospital. This is the earliest I can remember. The smell is the thing I remember most, so clinical and artificial. It hurt my nose. The air was warm and dry, which made it such an unpleasant place to be caged for weeks on end. The whole hospital experience made me feel isolated, as though I had been taken from my friends and forbidden to see them. I felt like a prisoner.
I had to have a cannula fitted on my hand. I had a fear of needles and as soon as the doctor came near me I screamed the place down. He hadn’t even attempted to put it in my hand yet. I screamed so loudly and for such a long time he told my parents that he would have another go at fitting the cannula after I had calmed down. There was a sense of achievement because I thought that I had scared off the doctor. I had won this battle. This is all I remember before the operation. I was on the ward for about four weeks. It became my second home and all the nurses and play leaders had come to know me really well. Play leaders entertained the patients and kept us occupied. They brought colouring books and puppets for us; it really helped lighten the mood. My favourite activity was colouring in, because it took up the most time and I forgot where I was for a little while. It was my ticket out of the hospital whenever I wanted to leave.
When I was 11 my cardiologist, Dr Stummper, asked for me to have an MRI scan. The scan took place at Stracathro Hospital. It was close so there wasn’t far to travel. I’d never seen an MRI machine before, but I wasn’t particularly nervous. I am never nervous. For the scan you have to wear a highly revealing gown. That’s the thing I was most worried about. It was so embarrassing. My dad just laughed. The room where the machine was had large windows on one wall so that the nurses and any prying eyes could see in. I felt like I was being used for a medical experiment. The room had the same hospital smell that is really unpleasant to me. The memories of hospital came rushing back like a wave. I was struggling to keep them from flooding my brain. The machine is a glorified toilet tube, with giant magnets around the outside. It took up the whole room, a big room. There was a bed that slid out one end of the machine. The nurse asked me to lie on it. It was surprisingly comfortable, but then she strapped me in. I had two straps and a pad placed on my chest. My arms were tied too. I couldn’t move at all. It was like being one of the chronics from the film ‘One Flew over the Cuckoos’ Nest’. The nurse pushed a button on her universal remote and I slid into the abyss of the toilet tube. It was really dark and my nose was nearly rubbing against the top of the tube. It was claustrophobic. I had a pair of headphones on which the nurse could talk to me through. She was giving me instructions on when to breathe. It felt extremely strange being told when to breathe, like a robot being given commands.
The scan lasted about forty five minutes. The nurse slid me out of the tube and undid the straps; I was finally able to move. The MRI had created a video of my heart working away. At the top of the heart there was a bean sized lump, an aortic aneurism. It had to be operated on as soon as possible before it ruptured. I was in shock and my heart sunk. I’d had luck on my side so often; would it really be with me again? There were no symptoms or signs of such a serious problem. I was given a few weeks warning before I had to go to hospital again. This was going to be my fourth surgery. I tried to block out the fact. I just made the most of the time I had before leaving everything behind.
We drove down to Birmingham for my operation, a four hundred mile journey. We were shown to the same, haunting ward where the screams from six years ago still echoed in my head. I felt deeply insecure. We arrived on a Tuesday and I was home by the following Monday. Six days is pretty good for open heart surgery. I was enormously glad to be home.
My life has been traumatic but I always try and look on the bright side. I have a great family who I love to bits and who love and care about me. If I hadn’t had the operations I wouldn’t be who I am today. I wouldn’t even be here. The future is uncertain for people with Hypoplastic left heart syndrome. There is no complete cure for the disease. I’m just living for today and try and take the challenges that life throws at me in my stride.
Carole praises the support her and Thomas have received from Little Hearts Matter over the years. She said:
“Little Hearts Matters has always been at the end of the phone for us and helped us with our journey with Thomas. Thank you so much for all of your support, from the first time I went to the open day at Birmingham Children’s Hospital in 1996 whilst tom was in ITU till the present day. We will always be indebted to the whole cardiology team especially Mr Brawn and Dr Stumper who were there for all four of Toms operations.”
The following essay, called Broken Heart, was written by Tom Messer, when he was 15. The essay, which was written as a school project, offers an insight into how he viewed his HLHS.