How Doctors Betrayed My Downs syndrome Brother, By Heidi Thomas Last updated at 1:02 AM on 01st June 2008
In a heartbreaking account, Heidi Thomas, the screenwriter behind BBC drama Cranford, tells, for the first time, the shattering story of her beloved brother David, a Down’s syndrome boy who was repeatedly failed by the medical establishment during his short life – and then again after his death.
David Jeremy Thomas was born on March 2, 1970, in a private nursing home in Liverpool. I was seven, our brother Jonathan just four.
The weather was bright and spring-like, but confused. My mother recalls that snow fell as she laboured.
I remember vivid sunshine, a hail of blossom as I hurtled out of school. My father was waiting in his car outside the gate. ‘You’ve got a little brother. And he’s got ginger hair.’ We groaned; they were the two things we had said we didn’t want.
On being introduced to him, our love was instant and complete. His hair was not ginger but a fine red gold and his mouth turned up at the corners as he slept. Next day, as she changed his clothes, my mother tells me, she experienced a tremor of misgiving.
‘The sun was very bright, coming in through the window and on to the bed,’ she says.
'He blinked his eyes, and I thought, “He doesn’t look like the other two.” And then I stroked his head, and felt this gigantic gap at the back of his skull.
’My mother, then 32, did not know that an enlarged neonatal fontanel (the soft spot on a baby’s head) was a classic marker for Down’s syndrome – she knew only that there was something wrong. For five desperate days she wept and begged to see a specialist. The nuns who ran the nursing home dismissed her panic as a case of ‘baby blues’. In the end, she enlisted her best friend Shirley, a mother of six, who grasped the problem instantly. There was a three-month wait before they saw a paediatrician. My parents left the consultation reeling, having been given no advice beyond a brisk green booklet called ‘Your Child Is A Mongol’.
David had been diagnosed as having Down’s Syndrome but at the time children with the condition were cruelly labelled ‘Mongol’ because their eyes resemble those of people from Mongolia.
My mother, incensed, dropped the booklet down a drain outside the clinic. ‘I didn’t want you or Jonathan to see it.’ And she looked at my father and said: ‘What are we going to do?’ He tucked the shawl round David very tenderly, and said: ‘He is our baby. We are going to take him home.’
It was made clear to both Jonny and I that David was ‘different’ and ‘special’. No further details were furnished and when a girl came up to me at school and jeered: ‘Your brother’s a Mongol’, I scratched her on the neck, and knocked her down. She was the one who was punished, and I assumed it was because she’d told a lie.
The truth was simple: we all adored him. He was placid and full of smiles; he liked Dinky cars and Weebles and being in the bath. He had an entertaining repertoire of songs and counting games and was always thrilled to see us, flinging out his arms and bellowing with joy. In turn, his small achievements were met with wild applause. There was lots of approval in our house; we made each other feel fantastic. It was a happy, rumbustuous home, always full of people, as we had a large extended family and my parents liked to socialise. David and Jonny loved company, and thrived. I had a solitary streak, and sometimes hid.
My mother was young and gorgeous and fanatically house-proud. I once saw her hoovering in hot pants, singing along to Je T’Aime. She made amazing chips, and kept us all spotless, smelling of coal tar soap and Vosene. On Saturday mornings, she’d have her hair done and I’d go to ballet, while Jonny played the trumpet and Dad and David stayed in, watching Tiswas. I’d often come home to them spread-eagled on the carpet, arms and legs waving as they did the Dying Fly.
It wasn’t all plain sailing. In the early Seventies, attitudes towards children with special needs were not as enlightened as they are today. Disgracefully, when David started playgroup, the other mothers asked for him to be removed. (Mum found a play scheme in a much tougher area, where he was welcomed warmly.)
But on the whole, the Down’s syndrome was a doddle – it was David’s heart that ruled his life, and ours. Cardiac lesions are not uncommon in children who have Down’s, but David’s was at the severe end of the spectrum. He was born with Fallot’s Tetralogy, a devastating combination of anomalies. In addition to a hole in the ventricular septum (the divide between the two bottom chambers of the heart), Fallot’s features an obstructed pulmonary valve and a displaced aorta. The muscular wall of the heart is hypertrophic (thicker than usual) and malformed, giving the organ a distinctive boot-shaped outline.
Perpetually starved of oxygenated blood, David struggled to walk, was frighteningly blue and squatted for hours with his knees drawn to his chest, a posture typical of children who have Fallot’s. His breath rasped and his fingers and toes took on a swollen, ‘clubbed’ appearance. He suffered agonising attacks of croup, during which he would gulp and strain for air. My mother remarked: ‘I never knew if I’d wake to find him dead.’
At the age of six, David had a palliative operation, at the Myrtle Street Children’s Hospital in Liverpool. A Potts shunt (a tube) was fitted, connecting his pulmonary vein to his aorta, vastly improving the blood flow to his lungs. Afterwards, a foot-long scar curved round his ribs, but his skin was stunningly pink-and-white. I remember stroking his hand, turning it over and over in mine. It was the first time our fingers had been the same colour. David still required major corrective surgery, and went on the waiting list almost at once. For two or three years, he was relatively well. He could potter with golf clubs and walk as far as the local shops and back. One of us had to trail behind him with the pushchair because when he got tired he would sink to the pavement and sit there like a stone – but the progress felt immeasurable.
Freed from hospital appointments, we had several holidays. Most were in Devon, which we adored. One was in Anglesey, but it was beyond endurance. There was actually sleet – in June – and we came home early. But wherever we went, David did the same things. If the beach was shingle, he threw stones in the sea. If it was sandy, we would have to bury him. He could spot an ice-cream sign from 50 yards.
He thrived at his special school, learning basic arithmetic and how to read and write. His drawings were appalling – great swirling sheets of labyrinthine scribble, which we would scour for hours in search of meaning. Only one of them ever had a title – it was called Men Running Away.
David shared our father’s anarchic sense of humour. He loved wrestling and explosions and people falling down and was once caught with a saw, attempting to hack through the decorator’s ladder. I can still hear his bubbling, belly-chuckle laugh.
He was not a paragon. He had, for example, a fixed and rigid taste in telly. Showjumping and He-Man and The Masters Of The Universe were his favourites; there was no choice of viewing until he’d gone to bed.
He could also be extremely stubborn. He disliked zoos in general and monkeys in particular – a school trip to the safari park seemed ill-fated from the start. Within the hour, my mother was sent for. David had retired beneath a hedge and was lying down, head on a rolled-up anorak. He had resisted all entreaties to come out.
At about the age of nine, his health began to worsen. He needed piggybacks all the time, which Jonny gave without complaining. (Dad used to say, ‘He’s not heavy, he’s your brother’.) Soon, we couldn’t leave the house without a wheelchair, and David was frequently hospitalised.
Nevertheless, his operation seemed no nearer. Children not even born when he went on the waiting list were beating him to theatre. The reason was as obvious as it was distressing – they were normal – he had Down’s. My mother and father were magnificent. In those days it was not the norm for parents to sleep in hospital but David never spent a single night alone. Once, for several dismal weeks, they had him on oxygen in Ward 7 and Jonny in traction in Ward 1. (He had fallen off his skateboard, severely injuring his spine.) After school, I used to go to the hospital and sit and write my essays in the sluice room. It was pointless going home – there was nobody there.
Our father died, suddenly, in 1981. It was the most testing of times. There was a short and desperate chapter where David sat by the door, waiting for his Dad’s return, but by and large he adjusted faster than the rest of us. Blessed with a genuine simplicity of spirit, he did not dwell on the past or fear an unknown future but rather met each day on its own terms. He was a real inspiration to have in the house – and anyway, we had to get him out to the swings and back in time for Love Boat. In rallying around him, we pulled through.
My mother once said that having a disabled child taught her who her friends were. As we grew up, Jonny and I made much the same discovery. We were always bringing mates home, but were fiercely proud and protective of David. If they shied away from him, we didn’t ask them back. He was a brilliant litmus for judging human nature – if you liked him, you were in.
The person who liked David most was a tall, shy man called Arthur Hurst. He would eventually become my mother’s second husband but, from the beginning of their courtship, he put David centre stage. Between them, they devised a string of catchphrases, including ‘Guinness Is Good For You’. Endless repetition kept them both convulsed.
At the age of 14, David had a growth spurt. We were warned by doctors that he would top 6ft, most unusual for a person with Down’s Syndrome. His heart – already buckling – began to collapse beneath the extra strain. When he was confirmed into the Church of England, he was too frail to even kneel before the Bishop. He just about managed a sort of courtly bow, and the Bishop’s hand lingered as he marked him with the cross.
We were hugely relieved when surgery was scheduled for April, 1985. He had been on the waiting list for eight whole years. David talked, enthusiastically, of the things he would do once healing was complete – he was going to play football, ride a bike and climb a mountain. Given his leisurely disposition, I privately thought that none of this was likely – but his dreams functioned as a shorthand for us all. David was going to be cured.
I cannot write, even now, about the night before his operation. It makes me too sad; we were laughing so much. He died on the table. His heart had been stalled, to facilitate repair, and simply would not start again. Afterwards, the surgeon came and said the long spell on the waiting list had fatally damaged David’s tissues. At best, post-surgery, he might have lived two years. At worst ...
We did not need him to go on. The worst had happened.
We went home and cried, clinging to each other in the howling empty house. We said the same thing, over and over: ‘What are we going to do without him?’ He couldn’t have had a better epitaph. I just wish it was the conclusion of his story.
Late in 1999, disturbing reports began appearing in the media.
At Alder Hey children’s hospital in Liverpool, the organs of dead children had been removed, and stored, without their parents’ knowledge. A scandal was brewing and, though we felt instinctive sympathy, the story only touched us from a distance. David’s treatment had always been at Myrtle Street, closed and demolished a decade earlier. An inquiry took place and in January 2001, its findings were published. They made the 6 O’clock News and this time Myrtle Street was mentioned. Children who died there also had their organs taken for research. Mum and I were agreed – we needed to know. I offered to make the enquiries.
I was pushing 40 then, and in the intervening years she had lost Arthur to cancer. The roles had imperceptibly reversed; I was the one who was sheltering her. I rang the helpline that same night. Everything was dealt with by Alder Hey Trust, which had absorbed Myrtle Street after the latter was closed. The woman I spoke to seemed gentle and concerned and said she’d be in touch if there was any information.
We heard nothing further and the matter drifted from our minds. Then, in the November, I had a call from Alder Hey. It was a different woman this time, and she was crisp and businesslike. They had David’s heart. It had been removed from his body the day he died, and spent the intervening 16 years on display in a museum. One phrase still rings in my head: ‘It’s been kept in very respectful circumstances.’ Pause. ‘It had its own jar.’
I travelled up north, to tell my mother face to face. Her first reaction was to run out of the room, as though the news was an animal from which she must escape. By the time the Alder Hey representatives arrived, Mum’s dignity was icy. They had sheaves of paperwork, all of which needed to be signed and witnessed. Her hands were fists at her sides. ‘You didn’t ask me to sign when you took his heart away. Why should I sign anything before you’ll give it back?’ Her logic silenced them.
I signed several of the documents. I wanted to do everything I could. My overwhelming emotion at that time was one of guilt – reared to defend my brother in all things, I could not evade the feeling that I’d somehow let him down. As part of the process, we were told to decide – there and then – what we wanted done with David’s heart. Some families had opted for a second funeral, they said, but these were often painful and distressing. Would we perhaps like to formally donate it to the hospital, as a gesture of thanks to the doctors who had helped him? Remembering his eight years of waiting, we declined.
We organised a simple ceremony, at the side of the grave where he lay beside his father. There were just half a dozen of us present, including Shirley, my mother’s steadfast friend. The undertakers called – Alder Hey had offered to provide a floral tribute. We said no thank you, we’d arrange our own. The posy sat on top of the casket, which measured ten inches by 12. Jonny carried it, tenderly, as though its contents might be bruised, or break. The burial itself was oddly beautiful. The sun came out weakly as we spoke our prayers and there was a sense that we’d put something right. But the scar on the green turf lingered for a long time. For a while, I was clinically depressed. My mother still describes herself as ‘devastated’.
I didn’t reveal to many people what had happened. I was in shock that it meant so much, and those that I told were sometimes quite indifferent. They didn’t think it mattered – when you’re gone, you’re gone, and surely I carried a donor card? I do, and don’t intend to tear it up. I will gladly surrender any part of my dead body to someone who is ill and who might be helped by it. I might even give up my organs for medical research.
That is my right, my decision, my choice. And perhaps more importantly, my next of kin agrees. The pathologists at Alder Hey and Myrtle Street simply helped themselves, harvesting any organs that they fancied. I can accept their belief that this was good for science. I cannot accept their failure to request consent.
The rage and pain of the families could have been predicted. Almost without exception, the children whose organs were taken were stillborn or ill for the whole of their lives. Their relatives’ attachment to them was intense, and in the case of those who lived for months or years, this would have been coupled with acute protectiveness. As my mother observed, when mulling over what had happened, ‘It was the first time he’d ever been out of my sight.’
Since then, Alder Hey has established a whole new protocol. Bereaved parents are counselled and offered powers of veto, prior to any post-mortem taking place. Their grief is acknowledged as extreme and particular, and that is as it ought to be. Sometimes, things do change for the better. Time ticks by and if agonies don’t heal they somehow cease to bleed.
Now, if I cry when I remember David, it is not because of Alder Hey. It is not because his life was short and circumscribed. It is not because of the sleep he cost my parents, or the things his illness meant we could not do. It is because he is gone and we cannot bring him back, not for a day, not for a single hour. And yet, even as I weep, I refuse to say I miss him because he is with me everywhere I go.
If I am patient, it is because of him. If I don’t judge people by appearance, it is because of him. If I have a mordant sense of humour, if I love a daft joke or a singing dog, if I shout at people who abuse disabled car parks, it is not because I was born like that, it is because I became David’s sister, and loving him shaped me in a way loss can’t erase.
A year after we reclaimed David’s heart, we were phoned by our solicitors. We were to be offered financial compensation. I felt a spasm of dread – no amount of money could rub out what we’d been through. The Trust suggested an out-of-court payment of £5,000. If we did not wish to accept that, we could sue. My mother and I discussed it only briefly. Wanting no more dialogue with strangers, we agreed to settle out of court and draw a line beneath the whole affair.
She pressed a portion of the money on to me, with instructions to buy something in David’s memory. I was flummoxed for a time, unable to think of one material thing that could evoke his presence. Then, in my favourite antiques shop, I chanced upon a pair of silver candlesticks. They were perfect: shining, simple, strong and very dignified. Ever since, every Christmas, when we gather as a family, I polish them up and place them right in the middle of the table. My mother and I call them ‘David’s candlesticks’.
The room always rings with laughter of lads – I have a son now and Jonny has two. But as the light from the wax flames dances on their faces, I cannot help but think of the boy who is not there, and wonder at the way in which we’ll bear his mark forever.