As most of you are aware, our daughter - Natalie Juliet Hobster - recently passed away at Great Ormond Street Hospital.
She developed a bacterial infection of the brain - called Group B Strep (GBS) - which is the leading cause of severe bacterial infections within new born children. It unfortunately led to meningitis and, ultimately, death.
She was 7 days old.
Obviously it's a great tragedy, but, were it just that, we wouldn't have started this page.
What has proven a particularly tough pill to swallow, is - having had a period of time to recoup and discuss with healthcare professionals and policy experts - that this seems to have been an entirely avoidable situation, driven by poor policy.
Allow me to elaborate:
A background to GBS
Group B Strep is a natural bacteria that is carried by somewhere between 20-40% of women. It is not sexually transmitted. And in most circumstances it doesn't lead to any issues.
Unfortunately, in some cases it does - and it is passed to new born children through the birth canal.
These children then display very modest symptoms (tiredness, crying) and - left untreated - die. Usually within the first week.
There's a really simple way of dealing with it, which is carried out by the overwhelming majority of developed countries (USA, Canada, Australia, France, Germany, Spain, Hong Kong, Singapore etc) and even some less developed countries (like Argentina and Kenya, for example).
It involves a swab to test whether pregnant women carry the bacteria and, if they do, to administer antibiotics during labour. Countries that do this see the incidence of early onset GBS decline by around 85%.
The test costs £11 to the NHS, but the UK is almost the only developed country - aside from the Netherlands and Denmark - to not systematically perform it (the Netherlands are currently reviewing their policy because they recognise it's not working).
You can get it done privately, but because doctors in the UK rarely inform people about the issue, very few people do.
The net result is that every year 800 babies are infected who wouldn't otherwise be; 50% of these are left with permanent disabilities, 10% die.
You might be tempted to think that it's cost that's causing the UK to shy away from international best practice, but even that doesn't hold:
To test every pregnant woman in the UK would only cost around £8mn a year. Yet a single compensation claim for permanent disability can regularly lead to a multimillion pound payout... and there are hundreds of these (let alone the incremental healthcare costs.)
The international medical community are nearly unanimous in their assessment of the best way forward. The economics are obvious.
Current policy is costing money and it's costing lives.
Please donate and help us change that.
About Group B Strep Support
Our initial intention on learning the above was to start a pressure group to lobby for change.
Upon digging into it further though, we came across a charity called Group B Strep Support (GBSS), who not only already do this, but are evidently an extremely competent and professional organisation. They are advised by - for example - the Emeritus Professor of Obstetrics at Imperial College (as well as a host of other prestigious medical professionals) and count people such as David Cameron and Theresa May as supporters.
While they haven't fully reached their goal of introducing a mandatory test for every pregnant woman, they have been tremendously influential in moving the debate in the right direction.
For example, they were one of the leading voices in the most recent revision to the RCOG (Royal College of Obstetrics and Gynaecologist's) guidance to at least provide every pregnant woman with information about GBS and, if found positive, to treat them with antibiotics.
They are an excellent, effective and (unfortunately) underfunded charity.
Please give generously.
About our target
Our target to raise £7.7mn is clearly extremely ambitious and probably unrealistic. That is the amount it would cost to give every pregnant woman in the UK the test and is therefore symbolic. Every penny counts.