What happened to my son?
If your child catches measles, mumps or rubella the consequences can be devastating, which is why doctors describe the MMR vaccine as the most powerful weapon against childhood disease since antiseptic. But for a few tragic children, the vaccine is suspected to be the cause of autism, a serious mental disorder. Last week, Health Minister Micheal Martin met representatives of a group of several hundred families who believe the vaccine is responsible for their children's condition. More than fifty are preparing to take their cases to court. Gemma O'Doherty reports.
Mark Enright lies barefoot on the sitting room sofa eating sausages and chips with his hands. A robust nine-year-old, he has the physical appearance of any healthy, normal child of his age, but his behaviour is toddler-like. He plays with each piece of potato before pushing it into his mouth, his dark brown eyes staring straight ahead at the blank wall.
He makes sounds that make no sense to the untrained ear and screams in a deafening, high-pitched tone when he doesn't get his way. Every so often, he takes his hands from the plate and flaps them uncontrollably in the air. Sometimes, his body starts to violently jerk.
Mark's mental development ground to a halt at the age of 16 months several weeks after he had been given the MMR vaccine. He had been a happy, enthusiastic baby, interested in everything, highly alert. He had learned to walk and was slowly learning to talk.
``He was a normal baby doing all the normal baby things,'' says Bridget, his mother.
``There was nothing unusual about him. He was developing perfectly normally. It's hard to believe he had more words at the age of 16 months then he has now.''
When the time came for his appointment, Bridget didn't think twice about giving Mark the vaccine.
``We knew nothing about it, but we were told it was the best thing to do and we believed it was. Now we know differently. The only risk we were told about was a temperature or a mild rash. We were told to give him Calpol and he would be fine.''
Several weeks later, Mark was rushed to hospital with severe gastroenteritis. He was put into an isolation unit, his small body debilitated by the impact of continuous diarrhoea and vomiting. One week later, he was released, but the child who came home to Bridget and her husband Joe was very different to the cheerful baby boy they had known.
``From there on in, he was a changed child,'' says Bridget.
``You would call his name, but he wouldn't look at you. You'd get no reaction at all, as if he couldn't hear you. He didn't seem to recognise us. He just kept to himself, sitting in a corner on his own, staring coldly at the wall. He reminded us of the character in the film Rainman. All of a sudden, he just stopped and became a different person altogether.''
For almost two years Mark continued to regress as Bridget and Joe searched for answers. Desperate to find out what had happened to their bright baby boy, their life became a series of hospital visits, consultations with specialists and medical tests. They put all their savings into finding out what could possibly have gone wrong and whether it could be put right again. Finally, at the age of four, Mark was diagnosed with autism to the devastation of his parents.
It was only after he began attending school that the Enrights began to seriously consider the possibility of a link between Mark's condition and the MMR vaccine he had received as a baby.
``We got talking to other parents at the school. In many cases, there seemed to be a regular pattern to the timing of the children's regression. We were discovering that things started to go wrong in the days and weeks after the vaccine, that the kids began behaving strangely, lost their words, became withdrawn. That their mental development stopped. We knew it had to be more than a coincidence.''
Today, the Enrights are among a group of 50 Irish parents pursuing legal action against the manufacturers of the vaccine on the grounds that it contributed to their children's autism. A further 500 other Irish families of autistic children are believed to share their opinion while several thousand parents in the UK are also seeking compensation through the courts.
``We just want to know the truth about what happened to our son,'' says Joe. ``We want the medical profession to acknowledge that the vaccine caused Mark's problems, as we believe it did, and we want to know why we weren't shown this before he got his jab,'' he says, pointing to the patient information leaflet which comes with each vaccine but which parents rarely get to see.
The leaflet contains a list of the vaccine's side effects which can occur in ``rare'' cases. They include deafness, loss of function of muscles and co-ordination, inflammation of the nerves of the eye and the
brain, fits, and gradual mental deterioration.
``If we had been given the chance to read this, we would never have had him vaccinated. I would rather he got measles any day,'' says Joe.
Recent news that an Oireachtas health committee is to investigate the alleged link between the MMR vaccine and autism has come as profound relief to the Enrights, who see it as an acknowledgement that the State is finally listening to their concerns. Medical experts and parents of autistic children will be invited to make submissions before the committee, which is expected to be up and running by the end of the summer. When it concludes, a report will be sent to the Minister for Health, who has recently met with some of the parents involved.
In the meantime, raising Mark Enright gets more difficult by the day. The older he gets, the more attention he demands. He can be aggressive, lashing out at his parents and older sister, Michelle, aged 15. More often, he takes his frustration out on himself, biting his hands to the point where they bleed.
At the age of seven, Mark was eventually toilet trained but he still wets the bed most mornings. His bowel movement is unpredictable and painful. He has a raging thirst, numerous food allergies and irregular sleep patterns. When he is awake, he needs constant supervision.
``If he wanted to drink a bottle of bleach, he'd just take the top off and that would be it,'' says Joe. ``He doesn't fear anything. He'd walk straight onto a road without thinking. On a bad day, he screams non-stop. You try to ignore him. Then he'll just sob and sob for hours.
``It's not much of a life. If we want to go out, we have to organise it weeks in advance. You couldn't get a baby-sitter because they just wouldn't know what to expect. We keep being told we're looking for someone to blame. We're not anti-vaccine, we just think it should be 100% safe for every child.''
The MMR vaccine was introduced here in 1988. Given to babies at 15-18 months, it is designed to protect against measles, mumps and rubella and works by stimulating the immune system to produce antibodies against those viruses without causing harm. The vast majority of children who receive the vaccine do so without any side effects.
In recent months, public health officials have warned that a measles epidemic is likely if vaccine uptake rates do not improve. Currently, three in four children are immunised against the disease, well below the desired coverage of 97%.
According to the Irish College of General Practitioners, there is no causal link between the MMR vaccine and autism.
``If a parent asks me is there any risk attached to the MMR, I will tell them that all human activity involves risk,'' says Dr Brian Coffey, chairman of the Irish College of General Practitioners. ``We cannot give guarantees but I will tell them that they have a better chance of getting knocked down when they leave my surgery then their child being damaged by the vaccine.''
However, a new study which will be published in the coming weeks, has found that 24 out of 25 children who developed autism after an apparently healthy infancy had the measles virus in their gut. Researchers believe the virus could have come from the combined vaccine.
Professor John O'Leary, Director of Pathology at the Coombe Hospital, who conducted the research, describes it as compelling evidence of a link between autism and infection by the measles virus and has called on the Department of Health to carry out a full investigation with proper funding.
Small numbers of individual doctors are also beginning to express concerns about the vaccine. Dr Mary Grehan, spokesperson for the Association of General Practitioners, which represents 600 family doctors, believes parents are not being given the information they need to ask the right questions.
`As far as the AGP is concerned, the jury is out on the MMR vaccine, but parents shouldn't be asked to give the vaccine without knowing exactly what they are doing and judging what is best for their child individually. It shouldn't be left to somebody in a government department to decide that we vaccinate everybody with the MMR because it is cheaper and handier.
``This is where the biggest problem lies. In General Practice, you're dealing with the individual family and child. In Public Health, which is where the Department of Health is coming from, you're talking about the mass and herd immunity. If you get 97% vaccinated, then the diseases die out, and in that scenario, you're prepared to take one or two children who suffer as a result. But as a GP, you refuse to have anyone suffer from vaccination because you see them as individual people not numbers.``
The AGP is calling on the Department of Health to make a split vaccine available, which would be given at separate intervals during infancy and childhood.
``If we are going to give children vaccines, we should give them a single dose so that we know what they've had if anything develops from it. Maybe it's the measles that's causing the reaction, maybe it's the mumps, maybe it's the combination of all three. We don't know. But the health boards refuse point blank to give it separately because of cost. Then, they complain that vaccination rates are dropping. The reason is that a lot of parents would have got the vaccine if they could have got
``Babies are only developing an immune system when you're hitting them with three viruses at the one time and their systems are desperately trying to make antibodies to all three. I think we're going to have terrible problems later on when these children get into their teens or 20s or 30s. We just don't know what the outcome will be.''
Early findings from a study by the Autistic Society of Ireland, which will be published shortly, suggest that the number of children with autism has increased 100 fold in the last five years.
The Department of Health is in the process of establishing an autism register, which will for the first time record the numbers of Irish people with the condition.
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