You Don't Look Sick: 'I was born with half a heart but it won't hold me back'

There are 13.9 million disabled people in the UK – and many of them have an invisible illness.

When you look at someone with a hidden condition, you would have no idea they are ill, but they suffer debilitating symptoms and can face judgement for using disabled facilities because they ‘don’t look sick’.

Our weekly series talks to different people with different conditions to discuss what it’s like.

Will Goodenough, 25, from Sheffield, has a congenital heart defect called hypoplastic left heart syndrome (HLHS), which effectively means he lives with half a functioning heart.

The condition means that part of the heart did not develop properly in the womb and most babies are now diagnosed through ultrasounds before they are born but 25 years ago, when Will was born, the tests did not exist.

His parents found out about his condition the day after he was born when it became apparent that his heart was not functioning properly.

The next day, he had to have the first of his life saving operations and was given a 20% chance of survival.

Throughout his life, Will has had to live with the impact of reduced heart function and he also developed angina at the age of 20, which means he gets tight chest pains just doing light exercise.

But to people he doesn’t know, he looks healthy. He’s a dad to baby Ezra, living with his partner Emily and working as a pension administrator.

He tells Metro.co.uk: ‘I have just had to live and cope with throughout my life. Being a parent now I can’t imagine how my parents must have felt when being told I only had half a heart.

‘I feel that my condition is somewhat overlooked sometimes due to looking well on the outside.

‘When I was at school, my parents had to fight really hard for me to get the extra help I needed, such as free periods for me to do homework in due to not having the energy when I got home.

‘Teachers knew about my condition but really didn’t fully understand the effects that it had on my energy levels.

What is hypoplastic left heart syndrome?

Often the pumping chamber (left ventricle) is small (hypoplastic) and the mitral and/or the aortic valve may be narrow, blocked or not formed at all.

The body artery (aorta) is often small (hypoplastic) and there is a hole (atrial septal defect) between the two collecting chambers.

This means the blood’s journey through the heart is very different from normal. The blue (deoxygenated) blood flows into the right collecting chamber (right atrium), through the valve (tricuspid valve) into the right pumping chamber (right ventricle).

From there it is pumped up to the lungs where the blood receives oxygen. The red oxygen-filled blood then flows from the lungs into the collecting chamber (left atrium) in the left side of the heart, but it will be unable to then pass into the left pumping chamber (left ventricle).

As the valve will be blocked, it therefore passes through the hole between the two collecting chambers into the right side, where it mixes with the blue blood and follows the normal path to the lungs.

Whilst the ductus arteriosus is still open (patent), the blood will pass from the lung artery into the body artery and then around the body.

When the duct closes, the baby will no longer have oxygen flowing to their body. Gradually, without medical intervention, the baby would become sicker and die.

Little Hearts Matter

‘I often don’t use disabled facilities for fear of being judged or having to explain myself. When I had my blue badge I would rarely use it. I would be more likely to struggle to walk up three flights of stairs to use the gents toilet than to use the disabled toilet.

‘I know I am more than entitled to use disabled facilities but I do sometimes feel that other people may need it more than me.’

Will takes three different types of medication to manage his heart condition and says that with these, he can often function normally.

He says: ‘If I wasn’t to take these everyday tasks would become a struggle – for example, if I didn’t have my beta blockers I would experience chest pains when in the shower and just walking up the stairs would leave me breathless.

‘On a good day I can be tempted to do more than I usually would in one day; I might do a full day at work, then go to the driving range with a friend and then come home and help my partner with looking after our little boy Ezra.’

But Will knows even maximising the good days can take its toll and doing too much can mean he has to spend the following day in bed due to the exhaustion.

He adds: ‘On a really bad day I have not been able to go to work due to the exhaustion and can find it difficult to explain this to people so that they understand that I’m ‘not just tired’.

‘Luckily I am now working for a very understanding company that are very accommodating. They have allowed me to have a set shift rather than shifts that change work times as I am more productive in the morning.’

Now a dad to Ezra, looking after a baby can also take its toll on his energy levels after a full week at work but he is trying to strike a balance.

‘I have days, often on the weekend, where I don’t want to do anything other than just relax and sleep,’ he says.

‘However, when you have a baby, there’s not much time to do this, as I have found out since my little boy was born.

‘My partner, Emily, understands the need for me to relax and sleep and is more than happy for me to take this time, but as a new dad I am conflicted between wanting to spend time with my family but also listening to what my body needs.’

Not getting enough rest can lead to hospitalisation, which is something he finds difficult, particularly as HLHS is not always understood as it is rare – just 1 in 5,000 babies are born with it.

He says: ‘In January 2018, I spent five days in hospital due to both chest pain and the exhaustion that living with my condition brings.

‘In the morning I felt unwell I went to the walk in centre and was told to go straight to A&E. I was kept in overnight so that I could see a consultant and also so they could contact my consultant in Birmingham to get advice on how to proceed.

‘I often find that unless I am in Birmingham, hospitals are unsure of how to deal with me due to the complexity and rarity of my HLHS.

‘Since I was 17, I have had to stay on cardiac wards in an adult hospital. This can be challenging as I tend to spend a few days there and will always be a lot younger than the other patients on the ward.’

Throughout his life, Will has been supported by his family but he also has a close connection to the charity Little Hearts Matter, who support people with HLHS.

He says: ‘I have been really lucky that I’ve grown up with a strong family and friend network that have supported me throughout the number of challenges I have faced over the years.

‘This has included gaining support whilst I’ve been at school as well as university and throughout the periods of time I have spent in hospital. My parents have always worked hard for me to get the help I have needed.

‘Little Hearts Matter (LHM) has also been very influential for me growing up, They have supported both myself and my family. It has been really good to be part of the charity as it has allowed me to meet and become friends with other people with the same condition and discuss the problems we face.

‘I think this is really important as due to the rarity of my condition it is unlikely that I would come across anyone with the same health problems. It can become lonely as you feel that you are the only one facing these challenges but the charity has made me realise that other people share my fears and difficulties. I have made lifelong friends through the charity.

‘Even though my condition can be frustrating at times it helps me to have a positive outlook. If I hadn’t been born with half a heart I wouldn’t have had the opportunity to do lots of the things I have done due to being part go LHM, for example, I got to talk at the House of Lords etc.

‘I really try not to let it hold me back or stop me achieving what I want in life. It’s important for me to strive to live as much of a normal life as possible; I am living independently, holding down a full time job and now have my own family.’

How to get involved with You Don’t Look Sick

You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.

If you have an invisible illness or disability and fancy taking part, please email youdon[email protected]

You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.

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