Tuesday 23 July 2019
Left Field CHAPTER 9 - Salaam:
Renata had qualified as a dentist in Yugoslavia and, on arriving in London, she had to retake her exams to practice in the UK. Two years later, she started work. Like most young couples, we wanted children and after a miscarriage, our first son, Benjamin, was born at University College Hospital on April 7th, 1973.
Fathers were allowed to be present. I remember six hours after her waters had broken the midwife saying to the nurse, ‘Go get the Registrar.’ She sounded distressed as she turned to me and said, ‘You must leave the room.’
I left Renata crying and in pain and sat in the corridor of the maternity unit. I had no idea what was going on and was terrified.
After an hour, the nurse came over to me. ‘You can go in now and see your beautiful son.’
‘How is he? How is my wife?’
‘They’re both fine, but the doctor had problems and your wife was given an episiotomy. He had to use forceps.’
Over the coming years, I was going to think more and more about those forceps.
Ben vomited when given his first dose of powdered milk and our doctor said that when he was due for his immunisation for diphtheria, tetanus and whooping cough, he should only have the double injection, not the triple, omitting the whooping cough vaccine.
When he was three months old, I took him to the local health clinic to be immunised and reminded the receptionist about the doctor’s instruction. When the nurse gave him the injection, I didn’t think it was necessary to repeat myself.
A few hours after arriving home, Ben started fitting. We watched helplessly as our child writhed in pain, his body jack-knifing. We called for an ambulance and he was rushed to UCH where he was diagnosed with Salaam epilepsy, seizures that involve bowing backwards and forwards. The doctor told us that the severity of these fits kill, or leave an infant severely brain-damaged, so steroids would be used to stop them. After 24 hours, the drugs took effect and the fits stopped, but Ben was so weakened by them he contracted pneumococcal meningitis.
The consultant admitted that Ben had been given a higher dosage of steroids than they’d used with other infants. He said they’d been so pleased with the first results of the drug they had decided to increase the dosage.
When I looked down at him, Shakespeare’s words came to mind: ‘Misshapen chaos of well-seeming forms’.
Ben looked so beautiful and I remember a nurse telling me that he was ‘cute’.
But his eyes weren’t. They were two little windows into his chaos. He looked dazed and confused and, worst of all, in pain. I remember Renata and I sitting with him one weekend, desperately trying to get the nurses to check on his deteriorating condition. He had a high fever and the staff dealt with this by placing a fan at the end of his cot.
We asked to see the consultant when he did his ward round on Monday, but it proved unnecessary. When we arrived at the hospital that morning, we were told that Ben had developed hydrocephalus and was being moved to Great Ormond Street Children’s Hospital.
Ben needed an operation to fit a Spitz-Holter shunt inside his skull to drain cerebrospinal fluid from his brain to his heart.
The first operation was a failure and had to be repeated. Renata and I were then taught how to operate the pump. Set on the right side of his skull, we had to press it five or six times, twice a day.
We were both distressed when we got home from our hospital visits. We would sit and cry over dinner. Inside a get-well card I wrote words from William Blake and taped it to the head of Ben’s cot: It is right it should be so; Man was made for joy and woe; And when this we rightly know, Thro’ the world we safely go.
The card was for all three of us. It was going to be a long and hard search for that joy and, if I’d been this poor child and able to offer an opinion, I would have said to hell with Blake.
After six months, Ben’s consultant, Dr John Wilson – no relation – asked to meet us. ‘I’m afraid that your son will never lead a normal life. He will need special care and I think it unlikely that he’ll live beyond the age of three.’ We both started crying.
For the next year, the hospital would take Ben back once a month for a few days so that Renata and I could get some sleep because he would projectile vomit every night. It’s not called ‘projectile’ for nothing. This small infant would scream and cry as he hurled sick and bile across the bed and floor. The hospital supplied us with a large stock of disposable bed pads which we placed around him in the hope that they would contain the vomit. We took it in turns to spend the night with him.
After Ben came home from hospital, I started drinking. Heavily. At parties I would pass out in bedrooms, bathrooms, on summer lawns. My GP put me on anti-depressants which made me feel ill so I returned to the alcohol.
I was embarrassed to drink in front of Renata, who was also distressed, so I drank in the darkness of the cellar. It was not an easy place to get into. It was full of junk. Old bicycles, bits of chairs and tables, an old carpet, garden furniture from my parents’ home in Bromley. A large metal tool kit without the tools, damp books, Renata’s archived dental records. That Coronation Pye TV. Empty bottles. Dozens of them. And full ones. Whisky. I descended into this mess in the evenings. Renata never asked what I was doing.
I didn’t bother with mixers, although there was a tap somewhere in that gloom. I slurped the booze directly from bottle to mouth. I would then sit on the bottom step and cry.
When I came back up to the ground floor, I was drunk and ashamed. I’d mumble something about going out for milk and stumble through the streets. This sobered me up a bit, but did nothing to lessen my misery as I’d spent my walk peering into the front rooms of family homes in Muswell Hill. No nets and many people didn’t bother with drawing curtains or pulling down blinds. Families sitting watching TV together or eating around a table. A child playing the piano or violin with their parents staring adoringly at their little maestros. Why didn’t they have our pain? Where was their whisky? In cut-glass decanters brought out for special occasions. I have hated Muswell Hill ever since and when I am there – not often – I am back in that cellar gloom.
Many years later, Renata ran into Dr Wilson and she told him that Ben was still alive and making progress with his life. He told her that he was surprised we hadn’t sued. We thought he was hinting at the experimental steroid doses Ben had been given, but perhaps he was referring to the forceps delivery or the vaccination.
In June 2002 Anthony Barnett wrote an article in the Observer which said, ‘... Confidential records belonging to drug giant Glaxo Wellcome show three-month-old infants were potentially given faulty vaccines for preventing whooping cough, diphtheria and tetanus... Cholera vaccines are intended for adults and should not be given to children under six months ... There were hundreds, possibly thousands, of doses in each batch and these were injected into babies between 1972 and 1974. Doctors at the time reported that babies inoculated from these batches had suffered convulsions.’1
When I think of Ben, I start with the ‘what ifs’. What if he had not needed forceps delivery? What if I had been more careful in checking what they were doing at the health clinic when he was given the vaccine? What if we had reacted more strongly at UCH when Ben developed a fever? What if he had gone to a school that had been better able to help him with his disabilities? Renata had been keen for him to attend a normal school. What if we had known about the GlaxoSmithKline scandal earlier? What if we had sued? But who should we have sued? I know this is a destructive way to think because there are no ‘what ifs’. There are only what was, what is and what will be.
When Ben was four, Renata became pregnant again. Because of Ben’s illness, the Royal Free Hospital gave her regular checks and, after she was given an ultrasound, we knew she was carrying a boy.
We had a name for him. Elton John’s ‘Daniel’ had been at No. 1 when Ben was born and we had agreed that, if we had another son, we would give him that name.
A few days before her estimated delivery date, Renata was worried that there was little movement and we went to the hospital. They told us that everything was fine, but that if her waters hadn’t broken within the week, she would be induced.
Two days later, Renata was convinced the baby wasn’t moving. We returned to the hospital where she was rushed to surgery. They induced a dead infant.
Renata was still unconscious when I was visited by the health support officer. I was asked whether we’d like to see the baby and hold him. I said no. When Renata regained consciousness, she also didn’t want to.
Three years later, Renata gave birth to our third son at the Royal Free. He was a long time entering the world. Fifteen hours into labour, the midwife told me to go to the pub across the road. I had just downed my first pint when a nurse ran across the street and told me to hurry back. I was in time to see a boy dangling from the hands of the midwife, crying loudly. This was Jonny.
After Jonny’s birth, Renata and I agreed that we needed to acknowledge Daniel’s existence. We needed to forgive ourselves for not seeing his body, not giving him a burial. It had been difficult to listen to Elton John’s song on the radio or enter a pub and hear it on the juke box. Daniel, you’re a star in the face of the sky.
He had been buried in Finchley Cemetery. The hospital told us where he was and we found a metal stick with his number on it. It was spring so we placed daffodils on his grave, stood back and cried. Tears of sadness, regret, shame.
I was learning not to turn away from suffering, but to walk through the fire and hope to come out the other side.
Ben is now 42 and bravely faces his difficulties. He regularly picks up common illnesses and, in recent years, has had a recurrence of epilepsy. He lives in Cornwall, has many friends, a great knowledge of music and does occasional DJing. Jonny lives in Barcelona. He works under the banner of Eclectic Method and is a successful video and music remixer. U2, Snoop Dogg, Monty Python, Fatboy Slim and the BBC have all sought out Jonny’s services to create video remixes and he has played the after-parties at the Sundance and Cannes Film Festivals.
He and his Mexican-American wife have recently made me a grandfather with their son, Rhys Matteo.
1 ‘UK babies given toxic vaccines, admits Glaxo’, Anthony Barnett and Tracy McVeigh, the Observer, June 30th, 2002: ‘British drug giant GlaxoSmithKline has finally admitted that thousands of babies in this country were inoculated with a batch of toxic whooping cough vaccines in the 1970s. Some experts believe that these Trivax vaccines – which had not passed critical company safety tests – may have caused permanent brain damage and even fatalities in young children. In 1992, the family of an Irish boy, Kenneth Best, who suffered brain damage from one of these toxic vaccines, was awarded £2.7 million in compensation by the Irish Supreme Court. Despite a long and fierce battle with the drug giant, the boy’s family finally won this historic case after his mother Margaret made a startling find when sifting through tens of thousands of company documents. She discovered that the Trivax vaccine used on her son, from a batch numbered 3741, had been released by the company despite it having failed to pass a critical safety test. Documents revealed that the 60,000 individual doses within this batch were known to be 14 times more potent than normal. At the time the Irish judge accused GlaxoSmithKline – then known as Glaxo Wellcome – of negligence and attacked the company’s poor quality control at its Kent laboratory. Immunology experts condemned Glaxo in court for what one US scientist described as an “extraordinary event”. Last year an investigation by the Observer found evidence to suggest that vaccines from this faulty batch, which may have wrecked Kenneth Best’s life, had also been used in Britain. Liberal Democrat MP Norman Baker raised questions in the House of Commons, asking whether vaccines from this batch had been given to British babies. Then Health Minister Yvette Cooper wrote to the company asking for information. Now, almost a year later, GlaxoSmithKline has replied that it is “highly probable” the toxic batches had been used in Britain. The Department of Health is under pressure to make efforts to trace the children who received the suspect vaccines. Last week in the House of Commons, Health Minister Hazel Blears said: “Unfortunately they no longer have details of the quantities of vaccine or the places where the vaccine was supplied. Since vaccines were not centrally purchased and distributed at that time there are no central records either. Information on individuals who received these vaccines will only exist if the general practitioner at the time of the immunisation recorded the batch number and the patient’s notes are still available.” Baker will now write to the Minister to demand that she asks health authorities to check the records to find out who received the vaccine. It is believed that at least one boy from Wales died after receiving a jab from toxic batch 3741, although the parents have never been informed. A spokesman for GlaxoSmithKline told the Observer: “We do not accept that these batches were harmful.”’