It is February, which is Heart Month in the UK and the US. Although I have good reason to support this occasion, having been born with heart defects (AKA congenital heart disease or a congenital heart condition), I’ve been pretty unsupportive of it and anything really to do with charity fundraising for people with heart defects, apart from becoming a paid member of The Somerville Heart Foundation. Most of the campaigns delivered by heart charities make me feel a bit ‘ick’ as the young people say. It all tends to be a bit sickly sweet and cloying - I suppose because most people tend to mainly associate hearts with love, romance, Valentine’s Day, etc, and it’s an easier sell that way. Using survival stories is another obvious tactic, but it’s often (if not always) framed within the hero narrative, which I have issues with.
But here we are, and I’m turning over a new leaf. So this year, not only do you get information about Heart Month (click on links above or below), but I am also going to tell you a bit about my own experience with congenital heart disease. Don’t worry, this is the condensed version. I find it quite hard to write about my medical history without becoming inappropriately comic or (at the other end of the spectrum) overly miserable, in tone. I don’t know what people want, I suppose. I don’t know how interesting it is, really, for other people to read about someone’s medical conditions, especially if it’s someone they don’t know, and they don’t have any vested/personal interest in it.
Also, in real life, having a medical condition (or several), is mainly boring and/or stressful. It’s just not that interesting, either as the person experiencing the illness or someone who has to engage with that person on a day-to-day basis. A lot of it is just routine appointments, at vaguely the same times every year. Some of them include unpleasant tests/procedures and some of them are just ten minute chats with a doctor you’ve never met before. There is a lot of waiting - sometimes in actual waiting rooms, other times at home; for letters, emails, phone calls, texts, which may, in some way determine your life course. It’s not usually that dramatic, just annoying. Also, chasing medical professionals for information is A Thing.
There are dramas and scary times for all concerned, of course. Just to throw you off-guard and remind you that you are not actually a normal person. Examples: (a) 12-hour open heart surgery, (b) urgent and unexpected pacemaker battery replacement, (c) the cardiac catheterization investigation where you come out looking like you’ve been attacked by four vampires, (d) the MRI scan where you realise you are claustrophbic and literally run away to the church over the road. In case you are new to this, recovery always takes longer than you think it will.
My particular congenital heart disease is really three separate defects: transposition of the great arteries (TGA), ventricular septal defect (VSD) (commonly known as ‘hole in the heart’), and pulmonary stenosis. The quotations below are all from the British Heart Foundation webpages.
TGA
TGA is where the two main arteries in your heart are swapped around. This means:
Your pulmonary artery, which takes blood to the lungs to pick up oxygen, is where your aorta should be.
Your aorta, which takes blood high in oxygen from your heart to your body, is where your pulmonary artery should be.
Your pulmonary artery may also be narrowed (stenosis).
The swapping of the pulmonary artery and aorta causes a few problems, like:
The blood that’s pumped from your heart to your lungs to get oxygen goes around in a circle instead of into your body to deliver oxygen.
Blood that’s pumped from your heart to the rest of your body to deliver oxygen goes around in a circle instead of back to the lungs to get more oxygen.
If your pulmonary artery is narrowed, blood does not flow as well as it should.
Because of these issues, only a small amount of blood high in oxygen is moving around your body. Oxygen is only able to move into the body by:
A blood vessel (called the ductus arteriosus, or ‘duct’) that closes shortly after you’re born.
If you have another congenital heart defect that lets oxygen move around the heart like an atrial septal defect (ASD) or VSD.
VSD
The lower chambers of your heart (the right and left ventricles) are separated by a wall of muscle, called the ventricular septum.
If you have a VSD you have a hole in this wall. This means when your heart beats blood can flow through the hole.
Blood from the left ventricle (high in oxygen from the lungs) can flow into the right ventricle.
Blood from the right ventricle (low in oxygen) can flow into the left ventricle
Pulmonary stenosis (a type of heart valve disease)
Valve stenosis or narrowing means the valve does not open fully, it can block or restrict the flow of blood.
Approximately 1% of people are born with heart defects, making CHD the most common birth defect worldwide.
The physical effects of CHD vary from person to person - even people with the same types of CHD can have very different experiences. Many people with CHD need life-long medication, and/or may have a number of surgeries (major and minor) during their lives, but some people don’t. Each person has different limitations in terms of what they can do physically. Some people with CHD can run marathons; some people can’t walk more than a few metres, if that.
In an ideal world, everyone born with a heart defect should receive expert follow-up care throughout their lives, but this does not always happen in practice. People fall through cracks in the system, or live in denial and don’t want to engage with the medical profession. This latter can happen because people with CHD can feel ‘well’ for long periods of time and don’t feel that their condition is bad enough to do anything about. Plus, many people with CHD have had poor, if not traumatic, experiences of medicalisation in the past, particularly in childhood, and, understandably, don’t want to experience this again.
In my experience, the psychological effects of CHD are probably more pronounced than the physical, at least on a day to day basis - although that may change as I get older and less physically able. The two are quite closely intertwined, though. Being physically unable to do things you want to do tends to have a detrimental effect on people’s mental health. It is also hard to separate what is medical trauma or the effects of other problematic aspects of my (or anyone’s) life, but I think there are definite links between my early childhood experiences and my ongoing struggles with mental health, especially with anger and anxiety.
This post is already way too long and didn’t turn out how I thought it would. However, I hope it has been informative and encouraged people to at least think more about people with CHDs, and hopefully look at the links above and below for more information and ways to contribute to Heart Month, if that’s something you’re able to do.
Useful links:
British Heart Foundation - the UK’s main charity supporting people with all types of heart disease.
The Somerville Heart Foundation - a small charity doing great work supporting young people and adults with CHDs, including providing psychogical support.
Children’s Heart Federation - UK charity specifically focused on supporting children with CHD and their families.
Adult Congenital Heart Association - American charity for adults with CHDs.
The Children’s Heart Foundation - American charity for children with CHDs.
