BIG ISSUE: How I live wih a congenital heart defect and set up a charity so you could learn about it

I WAS not expected to live to the age of three.

When I was born my parents were told that I had a congenital heart defect known as Transposition of the Great Arteries.

This is where the heart is transposed – which means the aorta arises from the right ventricle and the pulmonary artery arises from the left ventricle – the exact opposite of a normal heart.

Doctors told them that if I did not have life-saving open heart surgery I would not live to the age of three. But here I am, four decades later, and it's thanks partly to my fighting spirit but mainly to the surgeons at Bristol Children's Hospital.

Now, I am one of the older adult congenital heart defectors (ACHDs) who are known as modern miracles. There was no one older than 15 with my condition when I was born.

My parents couldn't reach out via the internet because it did not exist.

But in 2007, through the internet, I set up CHD-UK to raise awareness of congenital heart defects and I have met many other adult congenital heart survivors with different types of defects.

You get to know them and then suddenly they are not here anymore.

Not every person with a congenital heart defect will die young. Some will go on to lead full lives. For example, I have met several women who are in their 60s who were born with Tetralogy of Fallots – four malformations which include a hole between the two chambers known as the ventricles of the heart.

We are here to give parents hope and that hope is that their child will be able to live a normal life (albeit with hospital visits) and to help spread awareness which is thoroughly lacking.

If I say CHD, you are more than likely to think of Coronary Heart Disease but this is not what I have, I was born with my defect.

Imagine growing up knowing that you may need a new heart.

Some may need that heart transplant when they are still young.

On Wednesday, I heard about a friend, who I will just call Phillip, who had the same defect as me but died after complications from a heart transplant.

That came as a shock to me.

He had had the same operation as me when he was a child and his heart had deteriorated so badly that he needed a new one.

However, I also know of another fellow with Transposition of Great Arteries who did receive a new heart four years ago and is back to living life to the full.

He will be eternally grateful to the donor's family for allowing their lost child to donate their organs.

For people like him, and me, after years of being told you are fine, you suddenly find that it is not.

You panic because you find you need a new heart but there is a shortage.

Imagine, having a life sentence on your head and waiting for that important call.

Donating an organ is one of the most selfless acts anyone could give. You can help up to 10 people have a new lease of life.

My fellow adult CHDs and I do not know our future. Why? Because there are no statistics available yet – we are the statistics.

Our hearts aren't deteriorating due to age or unhealthy lifestyle. It can be due to the repair of the heart performed when we were babies. So I urge everyone to sign up to the organ donor register. CHD-UK also promotes the use of pulse oximetry on newborns, this is a non-invasive machine which reads the amount of oxygen in the body and can be a symptom of a congenital heart defect.

We also support research into congenital heart defects.

CHD-UK have for the last year been fundraising for a multi-function patient monitor and we are now just over £1,000 from meeting out target (www.justgiving.com/CHD-UK) which we hope to have hit by the end of May.

We were helped towards are target during Congenital Heart Defect Awareness Week back in February where people wore red on February 10 to highlight CHD and to help raise money for the multi-function patient monitor.

In Gloucester, Rich Church-Keen waxed his legs for us.

Everyone can help in spreading the awareness of congenital heart defects and organ donation by speaking about it or by getting involved in fundraising.