'We should have been warned'

Siobhan O'Neill was told the new five-in-one jab might leave her daughter
irritable for a day or two. No one mentioned the possibility of serious
side-effects lasting up to a week
http://society.guardian.co.uk/health/story/0,7890,1555296,00.html

Wednesday August 24, 2005
The Guardian

When we had our little girl, we quickly realised that parenthood was all
about choices. Until she was old enough to make her own decisions, the
burden would fall on my partner and me to make the best choices for our
baby girl. When to start weaning, when to move her to sleep in her own
room, which nursery to opt for: a minefield of decision-making lay before
us, all of which would have an impact on her shiny new existence.So why
didn't we think twice about having her immunised? Our instinct was to
accept NHS recommendations, and that's what we blithely did. The
"five-in-one" injection (or DtaP/ IPV/HiB) was introduced to Britain in
October last year. It is meant to protect children against diphtheria,
tetanus, whooping cough, polio and Hib (haemophilus influenza b), and is
thought preferable to the jab it replaced because it avoids the need to
give a live polio vaccine orally, and eliminates the mercury-based
preservative that the other contained. Babies get the new jab at two, three
and four months, along with an injection against meningitis C.

The NHS is naturally pro-immunisation, reassuring parents that their babies
can easily cope with these jabs. Official literature insists that babies
barely react to them, but that if they do, they might be irritable and have
a slight temperature for up to 48 hours - that's all. Imagine our terror,
then, when our precious bundle was still unwell, and altered, six days
after her second jab. She was ill for seven days in total - and no one, it
seemed, could tell us why.

Health visitors suggested she had a concurrent cold. The practice nurse
echoed the cheering information on the NHS website that it is thought that
babies could handle 10,000 vaccines at once. All the books and leaflets
that we had accumulated insisted that babies suffer for two days at most.

So why did our baby continue to have a high temperature? Why was she
listless and pale? Why less interactive? Why did she have that odd glassy
stare and seem completely different to the way she was before we apparently
poisoned her?

And why, when I began asking around, did I find half a dozen other mothers
whose babies were also ill for about a week - in some cases mildly, but in
others with symptoms worse than ours, including severe vomiting and diarrhoea?

Though most people now accept that the suggested link between the MMR and
autism does not exist, this was inevitably what we thought of. Cool logic
can never entirely eradicate the feeling that it's unnatural to inject
serious diseases into tiny babies, and now those worries rose to the fore.
Had we been playing Russian roulette with the health of our baby?

Our GP used to work as a paediatrician at Guy's and St Thomas's. She is
strongly pro-immunisation, having treated children with the diseases that
immunisations aim to eliminate. We went to see her, and she told us that
she saw about one baby a month showing a reaction to the immunisation, and
one every six months with a reaction that could be classified as severe.
She felt our daughter's reaction was unusual compared to those normally
reported, but there was nothing much she could do other than recommend Calpol.

The whole episode left us upset, worried and confused, and it was only
later, while researching this article, that I got to read the patient
information leaflet for Pediacel - the immunisation our daughter had
received - as issued by the manufacturer Aventis Pasteur. Apparently the
symptoms she experienced are "rare", meaning that they are reported in
fewer than 1 in 1,000 cases, but more than 1 in 10,000.

Our baby's mysterious symptoms were all there in the leaflet. She suffered
what are described in clinical trials as hypotonic-hyporesponsive episodes
- but of course we were never offered this leaflet to read before or after
our daughter had the jabs. In fact, we were never offered any information
pertaining to the more severe side effects of the jabs. Our GP has since
said that the practice assumed this information was given to parents by our
health visitors - in fact it wasn't - and it is now looking into providing
more details to parents to help bridge the gap.

The Department of Health asserts that it "provides a wealth of resources
for parents and health professionals, [including] leaflets, fact sheets and
websites on all the vaccines used in the routine immunisation programme,
and including information on their safety, efficacy and possible side
effects", but the truth is that the information it offers is really rather
vague. Of course there are plenty of websites critical of immunisation
programmes that one could turn to. But you don't feel you can trust them
either. They're full of anecdotal evidence from parents convinced that
vaccines damaged their kids: they're very emotive, often verging on the
hysterical. What they're not is calmly factual and properly balanced.

Once our daughter had recovered, the next question was: should she have the
third jab as scheduled? You might think this would be straightforward, but
it wasn't. In fact, no one seemed to agree on it. Health visitors thought
we should continue as if nothing had happened and said she would probably
suffer less with the third jab. Our GP said she was as likely to suffer
just as much with the third, but said if we were worried we could always
opt to see another GP and pay to have separate injections, or not to have
them at all. The practice nurse said in her experience, babies generally
suffered less with the final jab, but there was no hard and fast rule
except that it was better to finish the course.

Eventually we waited until she was six months old and stronger before
subjecting her to the third jab - and she sailed through it. But another
local mother, whose baby's reaction was also severe, was told by her GP she
must have the third injection on schedule, or the first two were worthless.
That's untrue, as it happens - parents can wait until their child is 11
months old before completing the course, without needing to restart the
series.

So should we have been warned about the severe, if rare, side effects of
the jabs our daughter was given - and how long they might last for? Doctors
naturally worry that too much information can put patients at risk if it
deters them from taking medications that could benefit them. Interestingly,
though, the Pediacel leaflet, when I got to read it, didn't suggest a
time-frame within which to expect side effects after the immunisation. The
DoH may say that "experience in the use of a similar vaccine in Canada has
shown that the most common reactions seen are minor local reactions within
48 hours. We are not aware that this vaccine routinely causes a child to be
ill for long periods of time". But the leaflet does not give such limits,
and I think I would have found it helpful to know that it can be longer
than 48 hours.

It turns out that, since Pediacel was introduced to the UK, there have been
178 reports of adverse reactions sent to the authorities, although more
than two million doses of the vaccine have been given here - that's about
eight bad reactions per 100,000, less than was the case for the previous jab.

That's good news. But it doesn't really make up for the fact that we met
such a sea of ignorance when things went wrong for us. Health visitors and
GPs should surely know that side effects can last for up to seven days.

There are those who have a rather cynical take on this. GPs get bonus
payments for hitting immunisation targets, and the last thing they want is
people being scared off these jabs, as they were scared off MMR. One mother
I spoke to speculated that some medical practitioners adhere to the "party
line" that ill effects are experienced for only 48 hours because fewer
parents would opt for vaccinations if they knew their kids could be ill for
a week.

I'm not quite so cynical, but if parenthood is about making choices for our
children, the least we can do is make sure that they are informed choices.
Next time my child is about to have a jab, I will ask to see the patient
information leaflet first. That way, if things go awry, I'll at least have
had some idea of what to expect.