Analysis: An unending battle for justice
IN the early ’70s, Vera Duffy and her husband Kevin looked like they had it all — a happy marriage, a two-year-old daughter called Tracy, a successful retail business, and a new baby on the way. Life was looking good.
And when their son Alan was born in 1973, he was the icing on the cake. His mother remembers her newborn infant being alert, content, and healthy, a boy who, as the months went by, did all the normal things babies were supposed to do. He cooed and gurgled, smiled at his family, and laughed when his mother played peek-a-boo — he was the apple of his parents’ eye and the results of his routine medical check ups showed him to be progressing at a normal rate.
But all this was about to change.
When Alan was five months old, Vera took him for his three-in-one vaccine (diphtheria, typhoid, and whooping cough). This was standard practice and all new parents were advised to have their children vaccinated.
Despite the fact that 89% of Irish children are vaccinated each year and only a fraction of those experience mild side-effects, the Duffy family believe their son was brain damaged as a result of a reaction to the whooping cough (or pertussis) part of the vaccine he received in 1974.
They have spent the past three decades trying to find some evidence to back up this theory and although they have failed to get any medical practitioner to support their claim, Vera and her husband Kevin are standing by their belief.
She has recently published a book entitled Justice for My Son about the battle which has taken them from the day he had his first vaccination to their current attempt to get the Department of Health to place a tax on childhood immunisation in order to pay compensation should it be warranted.
“Alan was born on 11th May, 1973. He was a gorgeous baby, was always extremely alert — my mother nicknamed him ‘Smiley’ because he always seemed so happy,” recalls the Dublin woman.
“My brother remembers him reaching out to grab his bottle when he was only a few weeks old and I have memories of him sitting on Kevin’s lap, the two of them looking so contented.
“He always seemed to be in great form and I would often play with him on a rug on the floor, I did hiding games and he would scream with laughter — he couldn’t have been healthier and both the public health nurse and the doctor at his six-week checkup said he was 100% perfect.”
But after Vera took him for his first vaccination to her local Eastern Health Board clinic she maintains Alan began to change.
“When Tracy was vaccinated, she had been ill and very upset afterwards, so when it was Alan’s turn I told the doctor on duty and he said if it happened to Alan I should just give him some junior aspirin.
“So he had his injection and later that day, he was off his food and was in bad form. I gave him a spoon of medicine and during the night, he woke up with a high pitched scream. I got an awful fright and when I looked at him in the cot, he was ashen, his eyes appeared to be rolling and his arms were jerking out at the side.
“I took him to the GP a couple of days later and said I didn’t like the way he was behaving but he said he was probably teething and prescribed something for the pain.”
So she heeded her doctor’s advice and took her baby for his second vaccination on Dec 12, 1973.
“I thought Alan was out of sorts after the first vaccine so I was dreading him having the second one — but purely for selfish reasons. I didn’t want to have to go through all the crying and sleepless nights again so I told the nurse at the clinic that he had a cold and couldn’t have the vaccine, she said he was fine and administered the injection to him.
“When I got home, he was very quiet and I thought all was well but the next day he began twitching and throwing up his food and seemed totally blank — there was no recognition when I called him or tried to play. And as the days wore on, the jerky movements got worse and I began to get frightened but again, my GP told me not to worry.”
And so a few weeks later, Vera took her baby for his third vaccination on Feb 6, 1974: “Alan started having really bad convulsions after the third vaccine. I began to put two and two together and realised that he had been perfect before the first injection so there was a possibility that the drug which was supposed to keep him from harm actually had the opposite effect.”
Devastated by what she believed had happened to her son, Vera wanted someone to take responsibility and admit that her healthy child had been damaged by a vaccine — but this was not to be easy.
“As soon as I realised what had happened I went public with my story and other people began to contact me with similar tales to tell.
“I started to do some research and discovered that children with a family history of epilepsy should not be given the pertussis vaccine as it has been known to cause brain damage. I have a family history of epilepsy, but no one ever asked me and I couldn’t have known that it was relevant.
“A year after his first vaccination Alan was labelled as mentally handicapped — an epileptic who would need medication for the rest of his life. We were devastated. Our beautiful baby was now having up to eight convulsions a day and we were constantly rushing him to and from Crumlin Hospital.”
As far as Vera and Kevin were concerned, their son had been perfectly healthy before receiving the whooping cough vaccine but doctors and the State argued he must have been born with abnormalities.
The Sunday Press ran a story about the Duffy’s claim that their son was brain damaged as a result of the pertussis vaccine and the same day, a man arrived at their door holding a copy of the paper — he believed the same thing had happened to his child. Many others soon followed suit.
“First, a man drove up from the country to tell us that his son was also brain damaged after receiving his vaccine and then letters started pouring in to the newspaper’s office. I realised we were not alone and was determined to do something about it.
“Kevin and I set up an association for parents of vaccine-damaged children. We wanted to ensure that no other children would be damaged by vaccines and that proper care and compensation would be given to those who already were. I have since learned never to trust doctors or believe in the Government but at the time, I still had faith and lobbied politicians and visited lots of different specialists but no one would admit the link.”
In 1977, Vera and Kevin’s second daughter, Renee was born and the family made a vow not to have her vaccinated.
“Renee was a lovely baby but she cried a lot,” says Vera. “I thought something wasn’t right with her but Kevin thought I was being over fussy because of Alan so persuaded me to leave her be. The doctors I spoke to said the same thing but after a couple of months, I insisted that there must be something wrong with her because she couldn’t hold her balance, even from a sitting position so I took her to Crumlin where she had an X-ray and a brain scan.
“When the doctor called both myself and Kevin back for the results, I knew there was something wrong, but nothing could have prepared me for the news I was going to get. My baby had a brain tumour — I was heartbroken.
“Despite years of medication and surgery, nothing could be done for my little girl and her life ended on 20th July, 1980, just six weeks after her third birthday. All these years later, I still can hardly bring myself to think about it.”
After her child passed away, Vera almost lost the will to live but then became pregnant with her daughter Olga.
“Throughout Renee’s illness, I had no energy or motivation to do anything with regard to my battle for justice for vaccine-damaged children, the association carried on without me.
“But other families were continuing to fight and going through the courts. We watched with increasing hope as other cases were heard, but when they lost, it was devastating for all of us with similar stories.”
However, during this time another mother, who had a brain-damaged son, managed to prove that he had been directly affected by the vaccination he was given.
“I was over the moon when the Cork mother [Margaret Best] won her case against the drug company Wellcome. I thought she was magnificent and it was amazing that she managed to unearth the physical evidence to prove that her son [Kenneth] had been damaged.
“But the court put a gagging order on her and she was forbidden from making the evidence public — I know if I had that evidence in my hands I would have given it to every paper in the world, no matter what the consequences... But we had very different circumstances and Margaret needed the compensation to help her to look after her son, so I don’t feel any negativity towards her decision to keep silent on the matter.
“I decided that if she could win her case, we might also get justice for Alan — I didn’t want any compensation, but just wanted someone to admit that my son was either given a toxic vaccine or that he had a bad reaction to it — and to say they were sorry.”
When Alan Duffy was vaccinated in 1974, there were no official regulations or controlling body overseeing the immunisation programme. This changed in 1987 and since then all clinical trials have to be approved by the Department of Health.
A spokesperson for the Irish Medicines Board (IMB) said: “The National Drugs Advisory Board [NDAB] was established in 1966 and between then and the introduction of the 1987 clinical trials legislation [the Control of Clinical Trials Act], there was no statutory scheme or legislative requirements governing clinical trials.”
However, a voluntary code of approval did exist at the time.
“Following the introduction of the 1987 legislation, clinical trials could only take place in Ireland with the approval of the minister for health. Such approval was based on a recommendation from the NDAB. Following its establishment as the competent authority for medicines in 1996, approval of clinical trial applications became a statutory function of the IMB.”
Vera and Kevin took Alan’s case to court on several occasions but lack of evidence and perhaps legislation during the time their son was vaccinated meant they lost the case every time.
“As the years rolled on, I lost Alan a little bit every day,” says Vera. “By the time he was 12 he had the mental age of two and was as helpless as a baby.
“Every day he had convulsions and his body was wasting away in front of me. I wouldn’t let anyone else take care of him and would carry him up and down the stairs myself — on more than one occasion, he had a seizure while I was lifting him — I broke my nose twice trying to stop him from falling.
“After I had my other two sons [Karl and Kevin], my husband Kevin realised that there was no way I could continue looking after Alan myself and had him moved to St Michael’s House [a residential home]. I was devastated but eventually I accepted that it was too much for me and I would be able to see Alan every day as he was only a short drive away.”
But as the young boy grew up, his condition worsened and he died on Dec 31, 1995, aged 22.
Since Vera took up her claim against the State, the Department of Health has remained adamant that the safety of the Irish vaccination programme should not be called into question.
“The department wishes to assure parents of the safety of vaccines used in Ireland and the importance of having their children immunised,” says a spokesperson.
“Immunisation is regarded as one of the safest and most cost-effective of healthcare interventions.
“It is acknowledged by all the major international health organisations, particularly the WHO — and the immunisation programme in Ireland is based on the advice of the National Immunisation Advisory Committee, which was established by the Royal College of Physicians to advise the minister and the department, at the request of the department.
“The advice of the committee is informed by sound public health advice and international best practice.”
But Vera is not convinced and despite having no evidence to prove her claim, still believes her son was brain damaged after his vaccination.
“I would love someone to tell me what happened to my Alan — there is no question in my mind that he was affected by the vaccination he received. And I’m not saying that immunising children against disease is a bad thing, but people need to be informed of the potential dangers and those in charge need to own up if something goes wrong.”
Dr Kevin Kelleher, HSE assistant national director, says: “The HSE is not aware of any concern identified in recent years either nationally or internationally and just 15%-20% of recipients experience minor side-effects such as local redness and swelling.
“Very rarely a major local reaction involving swelling and erythema of most of the diameter of a limb can occur. This resolves without long- term side-effects, and is not a contraindication to further vaccination. Fever and irritability can also occur, however a temperature over 40C is rare... Serious side-effects such as prolonged, inconsolable crying or hypotonic-hyporesponsive episodes are also very rare and have not been shown to cause long-term problems.”
And according to Dr Kelleher, the danger of not having your child immunised is greater than any risk from the vaccination itself.
“Children who are not vaccinated with tetanus, diphtheria and whooping cough are at risk of getting all these diseases. Prior to immunisation the number of deaths caused by pertussis was high, for example 204 deaths occurred in 1948 and 3343 cases were notified in the same year.
“Ireland, like other parts of the developed world, has seen a rise in cases of pertussis in recent years reinforcing the need for individuals and the community to be vaccinated. Pertussis is often very severe in babies under six months, who are not fully vaccinated at this stage in their lives. The best way to protect them is by ensuring that over 95% of children are vaccinated which provides protection for babies under six months by limiting the circulation of the disease.”
The Department of Health agrees and says the vaccination programme is a vital to keep children healthy. “All the recommended vaccines used to protect children in Ireland are licensed by the Irish Medicines Board or the European Medicines Agency. They are licensed for use only after they have been shown to be both effective and safe,” says a department spokesperson.
* Justice for my Son is published by Gill and Macmillan and costs €16.99
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