Flesh and Blood Page 19

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  HEART PROBLEMS

  Heart n.

  1. A muscular chambered organ that pumps blood through the human circulatory system.

  2. The symbolic seat of human love; the essential essence of something.

  MEDICINE

  The human heart has a unique place in our medicine, history, language and culture. That fist-sized, metronomic lump of muscle, blood and valves has preoccupied surgeons, lovers, artists, executioners, priests and poets for centuries. So ubiquitous is the word ‘heart’ in our vocabulary that it’s almost surprising to remember it describes a discrete physical organ – one with a specific role to play in the maintenance of human life, and one whose maladies can profoundly affect the lives and families of those afflicted by them.

  The heart is the central driver of our cardiovascular system – a coordinated set of processes that circulate blood through the body and transport the nutrients, blood cells, hormones, oxygen and carbon dioxide necessary to maintain life. At its most basic, the heart is a system of two pumps – left side and right side – working in close harmony. Each side has two blood chambers – a small atrium at the top to receive the blood, and a larger ventricle below it to pump it back out again. When our blood has finished delivering oxygen and nutrients to our tissues and organs, it returns to the heart carrying the waste carbon dioxide. It enters the right atrium, and is then pumped towards the lungs by the right ventricle to be replenished. As we breathe, our lungs take the carbon dioxide and deliver fresh oxygen to the depleted blood. The newly oxygenated blood now re-enters the heart via the left atrium, and is pumped back out to the rest of the body by the left ventricle.

  This continuous cycle is regulated by specialist cells in the right atrium called the sinoatrial node. It’s the heart’s natural pacemaker, firing an electrical impulse that causes sensitive muscle cells in the atria to compress, pushing blood into the adjacent ventricle. An associated impulse in the ventricle then squeezes the blood back out to the system, and the sinoatrial node fires again. A human heartbeat. This cycle repeats between fifty and a hundred times every minute for a resting heart. Every hour of every day, every day of every week, every week of every year: from the first bright pulse in a five-week-old foetus to the terminal monotone of the geriatric’s electrocardiograph.

  To keep blood moving smoothly through the four chambers of the heart, each has a valve to prevent blood from flowing backwards once pumped out. The valve linking the left atrium and the left ventricle is called the mitral valve. This seals the path to the left ventricle when new oxygen-rich blood arrives in the atrium from the lungs, and then opens again to allow this blood to flow to the ventricle for pumping onwards to the body. In healthy circumstances we’ll never be aware of the church-organ symmetry of opening and closing valves taking place in our chest. Yet if our valves become defective, we soon notice it.

  One serious defect is called mitral valve stenosis, or MVS. This is a condition where the mitral valve fails to open fully due to damage such as stiffening or scarring. The constricted passageway prevents the blood in the left atrium from being pumped efficiently through to the ventricle and so the body gets a reduced supply of oxygen-rich blood. This leads to fatigue and breathlessness in the patient. The backed-up blood also increases pressure in the atrium, which can result in a build-up of fluid in the lungs. In severe cases, the restricted flow can cause heart failure.

  A common cause of MVS has its roots far away from the ailing heart itself. It’s often a consequence of rheumatic fever as a child – a disease that starts as a simple streptococcal infection like a sore throat, but develops into nasty fever, rash and joint inflammation. An insidious side-effect of rheumatic fever can be the undetected scarring of the mitral valve, leading eventually to MVS. The early treatment of streptococcal infection by antibiotics is now routine in developed nations, but this wasn’t always the case. A pre-war child of deprived means in the years before public medicine might easily have fallen victim to rheumatic fever. Then, many years later, long after the childhood malady was forgotten, their adult heart would begin to fail.

  The cause of some heart problems can even predate childhood. Congenital heart disease is a medical term that embraces a range of structural heart problems present at a child’s birth; like a hole between the heart’s chambers or a constriction to the arteries that supply it. The genes we inherit play a part in our heart’s fortunes. One genetic condition that can have a devastating effect on the structure of a baby’s heart is Down’s syndrome. This is a genetic anomaly that results in an extra copy of a chromosome being produced in the baby’s cells – something that affects more than 750 infants in Britain every year. The anomaly has well-known effects on appearance and learning ability – but less well known is the damage it can inflict inside the body. Down’s children are prone to congenital heart defects, and a particularly unfortunate manifestation of this is Fallot’s Tetralogy.

  Fallot’s Tetralogy is a cluster of four interrelated heart problems that lead to leaks in the chamber walls, constricted valves and a depleted level of oxygen in the blood. The deoxygenated blood supply can give the lips, tongue and flesh a telltale blue tinge, and the sufferer is prone to frightening bouts of breathlessness, choking and infection. Major corrective heart surgery is needed to repair Fallot’s Tetralogy if an affected child is to have any length or quality of life. Short-term surgical procedures may ease the worst effects of it for a while, but unless the underlying abnormalities are tackled, the child is likely to die of heart failure. The damaged organ then ceases to be the beleaguered supporter of a child’s life, and reverts to an inanimate lump of muscle, blood and valves, its value now gone.

  Or is it?

  The human heart has always had an emotional and metaphorical value greater to us than the sum of its medical properties. The ancient Egyptians believed it to be the seat of human morality. Aristotle thought it was the location of our intelligence. Catholic symbolism presents the suffering of a divine heart as the ultimate expression of virtue and devotion. Even in our secular age, the heart remains a potent symbol of romantic love and human emotion. The language we use endows the heart with a powerful transactional value – one that motivates the most profound feelings, actions and choices. For instance, we choose to ‘give’ our heart to someone, or it can be ‘broken’ by the actions of others. In some cases, it can even be ‘stolen’. We don’t have to delve too far into the metaphorical life of the human heart before we’re confronted by ideas of ownership and the choices it gives us. Yet do all these flights of metaphorical fancy have any relation to the value and custody of a real heart?

  More than we might think, perhaps.

  A deceased child’s heart with complex abnormalities such as Fallot’s Tetralogy could provide a valuable specimen in medical research. If medics were quickly able to remove the organ and preserve it for study, then some good might come from the problems that affected it. After all, the poor child doesn’t need it any more. Medically speaking, it seems logical and practical to allow medics the freedom to remove such an organ whenever they feel it’s appropriate.

  Yet legally speaking, things are not so simple. In England and Wales, the Human Tissue Act of 2004 sets out the rights and permissions governing the use of organs after a person’s death. Enshrined in this act is the principle that organs can only be used for medical research if specific consent is sought from the family of the deceased. If medics want it, they have to ask permission. And that means permission can be refused. Regardless of any value to science, the ultimate custody of that dead child’s heart lies with the family whose love helped to nurture it.

  Why? Why does a rational society, as reflected in its laws, choose to empower the emotional symbolism of a grieving family over the imperatives of medical science when it comes to possession of a dead organ? Does that serve the greater good?

  I think it does. The key word in law is not ‘possession’, but ‘consent’. The state doesn’t wish to preclude organ do
nation – in fact, it strongly encourages it. Yet it recognises that there is choice involved in the value placed on a human heart by society – a choice that goes far beyond matters of medical utility or genetics. By giving a grieving family the choice to gift their cherished heart to someone else, society acknowledges a wider healing function in the love that was poured into it. Love becomes most powerful in healing when it’s freely given, and not just when it’s assumed. The unseen families helped by that donated organ become bonded by love to the family that freely chose to donate it. They are joined to a wider family of collective care. A greater good.

  In matters of the heart, choice is the way that love best reveals itself.

  HISTORY

  Sacred Hearts: The McGann family, 1983–1990

  When we talk about family history we often define it in terms of shared ‘blood’ – a metaphor for the genetic inheritance passed on by our forebears over time. We might speak of similarities in appearance, character traits, or common susceptibility to certain ailments. It’s a seductive idea. The twisting chromosomes in our cells imply an infallible certificate of authenticity for clan membership. They’re the product of our parents’ contribution to our construction, and a breadcrumb trail to the contributions of their parents, and theirs, and theirs – backwards through time in a single straight line to the beginnings of life itself. In this metaphor, inheritance is something given to us by others. It’s assigned, established before our birth, and transferred to our children without their consent. If a family is defined by common blood, and blood means genetics, then DNA must be the heart of it all – the single beating source of identity flowing through our passive veins.

  But is that really all a family is? A shared code passed on to us by others? A passive inheritance?

  When we look at our family trees, a different truth jumps out. The branches aren’t just populated by people to whom we’re related genetically. There are also many people who have no direct DNA link to us – people like our in-laws, or the spouses of our siblings. Yet most of us would still refer to those people as our family, and include those people in our bonds of shared ‘blood’. Take my uncle Billy, for instance, starving in that Japanese prisoner-of-war camp. Just seeing his name written there on my family tree gives me a sting of sympathetic pain – a keen jolt of shared kinship. He’s my uncle Billy. My childhood clown, speaker of profanities, eater of flowers. Yet Billy was only related to me by marriage to my mother’s sister. If a scientist made a DNA comparison of that man’s blood and my own he’d find no link. In biological terms we’re strangers. Similarly, I have bonds of love and affection with my in-laws stretching back decades. My brother-in-law Johnny is one of my closest relatives; our fraternal bond is more than a quarter-century old. His brother David’s life and heart form a central part of this chapter, and my own family’s story. Yet he doesn’t share my genetics. The blood in our veins is medically incompatible.

  A family isn’t simply a passive inheritance. It’s defined by the bonds its members choose, and not just the bonds assigned by genetics. Each time a family member joins their life to a biological stranger in marriage, adoption or through having children, a new clan joins itself to our family tree at the junction point of the union. New ancestors are fused with ours. New descendants are sired by the mingling of separate genetic codes. Without this chosen love our gene pool would stagnate. Without this new family, an assigned inheritance couldn’t continue. Genes might specify the way we’re put together, but without our human will to love beyond those specifications, a family can’t be all the things it might be.

  Family blood is a versatile thing, capable of inhabiting many different vessels. It’s capable of choosing the arteries in which it flows. Capable of self-replenishment. Capable of transfusion into the hearts of strangers who share its vitality. Capable of new love. New family. New identity.

  *

  January 1983.

  My dad was wonderful on that opening night of Yakety Yak at the Astoria. Full of glowing pride and dry humour. He’d watched his four sons on a West End stage. He’d spent the after-show party swapping stories with members of Spandau Ballet and chatting gamely with punk pop star Hazel O’Connor. We watched him soak it in, and it helped us to stop for a moment in our own frenetic lives to soak it in too.

  Dad’s years of melancholy and inflexible duty had delivered an unexpected consolation prize. A clinching retort in his bitter dispute with life. He found himself the father of a family of celebrity acting brothers. We were appearing on chat shows and in tabloid articles. Dad took the torn-out press clippings to his local church club to show his fellow snooker players. We were ‘Joe McGann’s lads’. Local boys made good. His surname was now pasted across headlines and glowed in theatrical neon. It meant something to him. A new lease of life – or perhaps simply a balance paid on the old one.

  As he progressed through his fifties, Dad’s heart had begun to give him trouble. He’d not been a smoker since his navy years, and was fit for his age. Yet he became short of breath and found it difficult to walk any distance. The doctors diagnosed a heart valve problem, and asked him about his childhood rheumatic fever. Dad denied he’d ever had it, but it was likely to have been forgotten in the wider maladies of his tough pre-NHS childhood. The evidence was written on his scarred mitral valve. He was given valve replacement surgery, but after a few years it failed. The cloud of grey that had always attended him began to darken. He looked weary. Isolated by his infirmity from the new energies that surrounded him.

  It was a bitter shame, because at the same time his wider isolation had finally begun to thaw. In a touching postscript to my parents’ divorce, my mum had invited Dad to move back in with her. He and Mum had re-established polite relations after the kids had moved to London, and although he never swallowed quite enough pride to concede he’d been wrong, the regret he experienced in the years of separation had softened his stubbornness. The war was over. Mum had never wanted to divorce Dad in the first place, so when she saw his fading condition she was glad to assuage the quiet guilt that had clawed at her ever since the last solicitor’s bill had been paid. Divorce was still taboo in their shared faith, whatever the justification. Mum’s break for freedom had placed her outside of the church’s higher laws. So now she simply declared it void. No legal papers or ceremonies necessary. She invited my father back home one day, and he came. When the kids arrived back from London on a visit, Dad was sitting in his old chair like nothing had happened.

  We loved this arrangement. We loved its quiet compassion and compromise, its wise eccentricity. A state-divorced Catholic couple living ‘in sin’ together as unmarried singles was an amusing moral conundrum. If you asked Mum how she explained her unorthodox marital status to the world, she’d simply shrug. ‘The Catholic Church doesn’t recognise divorce,’ she’d say, ‘so we’re still married in the eyes of God.’ This showed a logical dexterity worthy of Sir Thomas More. What God has joined together let no lawyer put asunder. It was also a reminder of the other heartbeat that had propelled my family through the veins of time to the present day; something that had specified my family’s nature well before the potato fields of Roscommon had turned bad. There were bonds of loyalty beyond the family that we could see – a wounded heart more worthy of worship than our own. Religious faith.

  One of the first encounters that any Catholic child has with matters of the heart is the livid image that greets them in every relative’s household, and in every church they attend. The image of the Sacred Heart of Jesus. The Sacred Heart is one of the most popular and enduring of Catholic symbols – an ancient vision representing Christ’s humanity, and his suffering for the forgiveness of our sins. It’s quite an eyeful for an impressionable infant. Jesus is displayed facing us, arms open, revealing His exposed heart sitting in the middle of His chest or, better still, held out in one of His hands. The heart is a deep raw red and drips with blood from a gaping wound. Around the heart is a ring of thorns piercing the exposed muscle, while to
ngues of fire can be seen bursting from its top. It’s a gruesome and elaborate collection of heart problems symbolising Christ’s crucifixion. Despite the evident cardiac distress, Christ’s expression remains calm – wistful. His free hand indicates the bleeding heart held in the other. He stares at us as if to say, ‘Look what I did for you. For your sins. Don’t you care?’

  To a young mind it’s a powerful message. The sweetest, gentlest man who ever lived suffered for me. Suffered horribly – his heart lacerated and burned. All because of my faults. Because I was born in sin. Because I don’t love my mother and father, my brothers and sister, as much as I should. Because I haven’t learned the cost of what it means to be a full member of that wider family he’s specified for me. It’s love as debt. Compulsory love. Owed, not freely given. It’s a duty, like my father’s relentless work ethic. Faith as a deeper rhythm. It overrides any pleasures of the flesh, or the legal arguments of divorce courts.

  Yet the image of the Sacred Heart is regarded by many good, decent people as a comfort and strength, and I can understand that. A debt is also a bond. Those who owe a debt of kindness also feel the warmth of the kindness given. There’s fellowship in it. A tribal unity. A family connection. The assigned genetics of established faith.

  The McGann children had been steeped in the family rites of the Catholic Church since our earliest childhoods. We were educated in its schools, and had spent every Sunday fidgeting in the pews of its churches. Before we were old enough to construct arguments about the deeper nature of the world we inhabited, we were handed a prefabricated moral framework for it all. A system for living. We were hardly exceptional. Much of the planet’s population is born into a religious culture of some kind, and many into mine. Many stay in it for life. Some, like me, don’t. But I can still feel its cultural heartbeat in my chest.

  The moral framework of family faith suffused our home. It was there in my father’s patriarchal assumptions; in the pill-free multiple births; in the unshakeable guilt of divorce. Liverpool’s Catholicism was rooted in the gothic sufferings of the emigrant Irish. There was a ravishing, martyr-burned beauty to it all. A rough tribal faith born in the pestilent brotherhood of the slums, and fought for by our ancestors. It wasn’t simply a belief system, it was the compulsory bond of clan membership. The sacred heart of a shared family order.