Vaccinations: More important than ever.

I found myself in a curious situation this week when I actually agreed with  Donald Trump:

"They have to get the shots. The vaccinations are so important. This is really going around now. They have to get their shots," Trump told CNN's Joe Johns on Friday when asked what his message is for parents

I'm staunchly pro-vaccination for many reasons and have constantly put my head above the parapet to explain why.  I wrote a blog post in 2013 explaining the reasons why I choose to vaccinate and expressing my frustration with those who choose not to.  At the time Daisy was still alive, Andy did not have cancer.  I was trolled online by the anti-vaxx community and whenever I reiterate my case I am trolled by them.  I don't care, really I don't, I stand by my beliefs and even more so.

So, to recap, for those who have never met me and don't know my blog and my story;

I am a measles survivor.  I was not vaccinated, when I was born the measles vaccination, while widely available, was not commonly given.  I developed measles at the age of 4, it's one of my strongest early childhood memories, of being terribly ill at home, in a darkened bedroom, unable to bear bright lights.  I was lucky, the only lasting damage is that I am now completely deaf in my right ear.  

It's a pain in the ass, and as my audiologist told me, it would have been easier if I had lost 50% hearing in both ears, they can do something about that rather than 100% hearing in one ear.  But it's a minor inconvenience compared to what might have been.

Just a few months after this picture was taken I developed measles

Roald Dahl wrote so movingly about the death of his daughter from an often fatal complication of measles, measles encaphalitis, swelling of the brain.  Measles can, and does kill.  Dahl's daughter was otherwise healthy, in a child or adult with an other health issues it's a potential death sentence.

Our memories are short.  Medical science has made us complacent. We expect to survive, we expect the medics to make things better, and when people do not get better there is almost a sense of shock and disbelief.

Just before Christmas, 2004 I gave birth to my fourth child.  A little girl called Daisy.  She was born two month's prematurely.  I had been very ill when I was pregnant with her.  Thanks to excellent ante-natal and neo-natal care both Daisy and I survived.  

Daisy had a very rare genetic disease which caused her entire gastro-intestinal system to fail.  Alongside multiple surgeries to remove most of her colon, she had to receive all her nutrition intravenously, via a catheter embedded into a vein.  She also spent most of her life on powerful immunosuppressants and steroids to control the severe inflammation in what remained of her gastro-intestinal system.

Medical science gave Daisy life and it gave us hope.  With her complex regimen of drugs and intravenous infusions Daisy was able to enjoy life.  Had she been born even ten years previously she would have died in her first year.  But this all came at a cost.  She was susceptible to infections, she had many hospital admissions for sepsis, caused by bacteria colonising her multiple catheters and indwelling lines.  This was a risk we were prepared to take because when Daisy was stable she had a good quality of life and was able to go to school and enjoy family time.

Daisy could not receive live vaccines however.  She had a compromised immune system which meant that vaccinations were contraindicated.  But this also meant that she was at risk of contracting infections.  She had shingles and chickenpox on multiple occasions.  In Daisy these were severe infections, landing her in high dependency,  If there was a chance she had come into contact with a child who was infectious with chickenpox then Daisy would have to have a preventative medication via a very large and painful intramuscular injection.  My biggest fear, however, was measles.  Remembering how I had felt and knowing how the virus had affected me, an otherwise healthy child, I knew that measles would kill the daughter I had fought so hard to keep alive.

I didn't worry too much however, I mean, we had eradicated the disease in the UK, you just did not hear of children having measles.  Measles, mumps, whooping cough...all diseases of another generation, a distant memory, we were safe.......medical science had solved the problem...

......Until slowly a movement began to grow, parents who decided that they did not want to vaccinate their child....and  cases of measles began to rise. Prompting my original blog post.  I just could not see why people would not want their children vaccinated, after all I lived with a child who could not be vaccinated and I knew the fear that it brings.

But the anti-vaccination movement has got bigger and bigger, and alongside that growth my life has my life changed dramatically.

Daisy died, at the age of 12, in January 2017.  She died of sepsis.  Years of antibiotic and anti-fungal treatment for infections had meant that she was colonised with multiple drug-resistant bugs, on top of that her cardiomyopathy was becoming worse and her heart failing.  The bottom line was that it was her time and I had to make the decision to stop life support and let her go.  I knew that medical science had kept her alive and I knew that we were lucky to have had twelve wonderful years with her.

Medical many ways the progress we have seen over the past decades has sanitised us to the realities of what life was like without the drugs and treatments that kept Daisy alive.  Daisy would have died within her first year, I potentially may not have survived her birth.  That's what medical science meant for my family.  Now children are surviving , people are surviving and it's easy to take for granted that what is survivable now was fatal a generation ago. 

The year before Daisy died, my husband, Andy died of cancer.  He had been diagnosed the year previously.  He was stage four on diagnosis.  There was no cure.  But immunotherapy treatment and brutal chemotherapy together with experimental radiotherapy gave us a year as a family.  It also wiped out Andy's immune system.  Suddenly I had two family members, both terminally ill but also at huge risk if dying before their time if they contracted measles.

Daisy and her daddy

I hear the arguments from the anti-vaxxers; there are still people who believe in the flawed and disproven Wakefield research that links autism and the combined MMR jab.  I understand the fear of parents of babies faced with multiple viewpoints.  Maybe I would have been one of those wavering parents, despite my deaf ear, as a parent you are overwhelmed with all the information and the burden of making decisions for your child that could massively change the course of their life.

I  do not believe that vaccines cause autism, 100%.  I am the parent of two boys on the autistic spectrum.  They were vaccinated, the vaccine did not cause their autism. I hear the cases, people write to me, but the reality is that there is absolutely no scientific evidence that there is a causative link between the MMR vaccine and autism. The causation that I have been presented with is tenuous and flawed.

However I also do not believe that vaccines are 100% safe.  What? I hear you cry! I thought she was pro-vaccination?  I am, but the reality is that nothing is 100% safe, when we make a decision on behalf of our child we are taking a calculated risk.  And I have had to make decisions that no parent should ever make for their child; decisions that make the vaccine decision pale into insignificance.

And yes there are cases of vaccine injury and side effects.  Like every single drug, from the contraceptive pill to aspirin you are taking a calculated risk when you decide to take it.

When Andy signed the forms for cancer treatment he knew that there were risks, not only that the treatment might not work but also that the side effects of the actual treatment could potential hasten his (inevitable) death.  Ultimately it was the rare side effect of the experimental radiotherapy treatment that set in train events that lead to his death.  Yet Andy still stood by his decision, at the end of his life he was glad he had given it a shot.

Andy was able to make that choice for himself but as parents we have to make choices for our children.  And the luxury to choose to vaccinate is an early choice and dilemma for all parents, so I would ask you to consider this:

What if you did not even have this choice? How lucky are we to live in a world where we can prevent these diseases rather than hope that our child is not one of the unlucky ones.

And then there is the question of the herd immunity to consider.  To ensure protection of the most vulnerable,  95% of people who are able to be vaccinated against a disease need it in order to ensure that those who can't are not placed at risk.  What if you were one of the ones who could not?  What if you had sat at your child's bedside waiting for a bone marrow match? A new set of lungs? A new heart? Knowing that the powerful anti-rejection drugs meant that although they would have the gift of life that life would be spent vulnerable to contracting fatal infections because they could not receive vaccinations?  What if you were the parent of the child who had died and you had made the decision to donate their organs?  What if you had been me, a few years ago, fighting tooth and nail to keep my child alive, knowing I was pouring toxic drugs into her just so that she could do the things she wanted to do, go to school, play with her siblings, but always living in fear as I heard about a new measles outbreak in my area.

And when you were pregnant with your child, what would have happened if you had been exposed to measles, mumps or rubella while your child was in the womb causing disabilities and issues they, and you, would have to live with for the rest of their lives?

Last time I wrote about this I was told that it was not about the wider community, or other children, parents messaged me that all they cared about was their child.  I was given information about children being diagnosed with autism,about immune systems being overloaded with toxins, about vaccines containing mercury......

Some of the drugs used to keep Daisy alive were so toxic they made her hair fall out.  I chose, as Daisy's mum, on her behalf, to put my faith in science, despite everything, the side effects, they gave Daisy time.  That decision did not come easily and I can empathise with every new parent who is now being bombarded by a powerful anti-vaxx lobby.  But remember, this is parenting, these decisions are tough but think about it another way, what if your child was diagnosed with leukaemia?  The survival rates for this blood cancer are now high, many years ago it was fatal, but the treatment is still not guaranteed and the side effects can last a life time.  Would you still agree to the treatment for your child?  As I see it that decision has far greater risks than the decision about whether or not to vaccinate.

Parents will find all sorts of pseudo-scientific reasons for why they choose not to vaccinate; overloading their child's immune system, heavy metals and toxins in the vaccines....again, just try and make life and death decisions about your child when they have a rare genetic disease and are not likely to live to adulthood.  Then you worry less about the pseudo-science and more about whether you will get a few more years of time with your child.

I know that for many anti-vaxxers whatever I write and say they will never be swayed, I will be bombarded by their evidence and papers to justify their decisions but there is one group who can have a voice.  Those children who were too young to decide whether or not to be vaccinated, whose parents decided for them.  They are growing up now, becoming teenagers, young adults.  They can make their own decisions.

In the UK young people aged 16 can ask to be vaccinated without their parents knowing and thanks to Gillick Competence this can occur at a younger age if their doctor deems that they are competent to make their own decisions.  If you are a young person who was not vaccinated and is now aware of the pros and cons, you can ask to be vaccinated, it's your decision and your risk entirely.  If you decide to be vaccinated you will be protecting yourself and you will be protecting those around you who are vulnerable and cannot be vaccinated.

And lastly, if you are the parent of an unvaccinated child, please do not expose other vulnerable children to preventable diseases of childhood.  If you suspect your child has been exposed to measles, mumps or rubella keep them away from the community, do not send them to school, keep them at home.  If they do develop the diseases I really hope that your child survives, I really do.  As a parent who watched her child die I would never wish that experience on anyone.