About Me

In case you wanted to know.

Hey, I’m Noah Evans.

I love all technology and love sharing things with others. I have a heart condition called Hypoplastic Left Heart Syndrome, where I basically have only half of my heart. Technically it’s called a single-ventricle heart condition, but that’s a bit of a tongue twister! One half never formed correctly. You can find more about this below. If you’d like more info, then simply send me an email or contact me through Twitter or Instagram - I’m @ThisIsNoahEvans on both.

Hypoplastic Left Heart Syndrome

I have lived my entire life with half a heart, and sometimes even I forget.

Birth

I was born two weeks and one day late on a very hot June day. More specifically, the 22nd. But wait. This is me. It can’t be that simple. And it wasn’t. It was found that I had a rare heart condition. Only 1 in 5,000 babies are born with this condition. The condition found was Hypoplastic Left Heart Syndrome, or HLHS for short. My left ventricle didn’t develop fully; so it is too small to do anything. Having only one side of a working heart means that my working side has to do all of the work a normal whole heart would have to do (so it does double the work) as well as stressful tasks like running, walking, and more.I also have a kinked aorta, if that’s interesting to anyone. The concept of HLHS is simple, but living with this condition can be strange and confusing.

Before School

Before I started school, I had three open heart surgeries to ‘re-plumb’ my heart to ensure I could live as much of a standard life as possible. Life during that time was tricky for myself and my family - which was down to them having to learn about and adapt to me having this rare condition. School I started school in Foundation at my local school, just like any other child. This time was extremely hard for both myself and my parents, who had trouble handing over not just the responsibility of their only son (like all other parents) but also the added responsibility of my complex heart condition. Foundation was not easy from a health standpoint, however I always did well academically and that trend has (thankfully, albeit somehow) continued throughout the entire of my education, to this day. Although I have extra absences due to tiredness, I continually do well at school - I am so, so lucky for this as I know other people with similar conditions who are not as fortunate as myself. I went through primary school as any child, with a few exceptions such as being unable to do some PE lessons, having plans put into place to save me having to walk up flights of stairs, etc. I had troubles along the way - many of them, I will not lie - however, many years on, it is clear to me that they were very small in the grand scheme of things. If there’s one thing I’ve learnt from living with this condition, it’s that nothing lasts forever: I will get more energy tomorrow if I rest, I will find a way to safely do what I want to do, and I have to stay positive. Now, in secondary school, I am enjoying school, personal projects, and managing my energy levels day by day. I manage my energy well, I am extremely busy (something I like) and I am doing amazing things - such as speaking at conferences, going on a school trip to London, and running a coding club.

HLHS Explained

Hypoplastic Left Heart Syndrome is a congenital heart condition (a problem that a baby is born with). Below is a description of the heart condition and possible treatments offered. It is made up of a collection of problems on the left side of the heart. Usually, 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. 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. Source: Little Hearts Matter Website