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Researching what went wrong


Our initial research showed that Group B Streptococcus was very complex and it was confusing, I am used to reading through vast volumes of technical documentation but I still struggled and Amanda openly admitted to struggle.  Part of the problem was that between us we had a number of pregnancies and just was totally unaware of its existence and its dangers.  There also appeared to be much contradictory information especially surrounding whether the infection is actually tested for during pregnancy in the UK.  For this reason we realised that we needed to speak with or at least liaise with individuals affected by the infection in both layman terms and gain an understanding of the medical side of things.  One of the first results that came up was a Support charity that gave assistance to those affected by Group B Strep infections.  Just by reading through some of their literature and following them on Twitter I started to get a feel for what is was all about.  Group B Strep Support are a small self-funded charity based in a small commuter town called Haywards Heath in West Sussex set up by a very determined lady who lost her baby son to Group B Strep back in 1996.  It became very clear to us that anything we needed or needed to know was best obtained from going directly to the charity.

We had assumed that Kettering General Hospital would be very compassionate towards us and would do whatever is required to give us answers but we did not expect them to admit any high level of guilt but at least acknowledge things where things could have been actioned differently.  We prepared ourselves quite well, I suppose as well as anyone who had buried their new born daughter only 6 weeks before.  It was probably fair to say that we could have been looking after ourselves a bit better physically, we were getting the children settled in the evenings and then drinking a couple of bottles of wine each night.  At first it didn’t seem a problem, ‘we had every right to’ seemed to be the general mantra for a few weeks.  As the meeting approached I think Amanda and I both realised that the drinking to blot it out philosophy was not helping and we needed to be prepared emotionally, physically and mentally.  We stopped it just as quickly as it had started, we spent much of the evenings researching what could have caused her waters to break so early, why was the labour so prolonged, why did Amanda become so ill.  Everything just kept pointing back to Group B Strep and Septicaemia.

Over the years I have researched many things but nothing was anywhere near as emotive as Group B Strep, some of things coming out of the research left us dumbfounded to the point where we were questioning whether the information was accurate.  It appeared that a test could have been offered to Amanda during pregnancy to highlight whether she was carrying the Group B Strep infection present prior to her going into labour.  Why was the test not offered to Amanda?  To our shock it was evident that the test was routinely available in many other mainstream countries including USA, Germany, Australia, Italy and Japan – why not the UK?  Why are the UK government not endorsing a routine test for pregnant mothers?     We were seeing tweets that were referring to midwifes not discussing the infection with pregnant couples because they did not feel informed enough to do so – this seemed preposterous, isn’t the purpose of a meetings with healthcare professionals prior to labour to be given facts relating to your individual pregnancy and birth plan and to be given the opportunity to discuss the best approach for an individual’s specific scenario?  Alarmingly we were also seeing references to maternity professionals stating that a Group B Strep infection is not harmful to either baby or mother and a waste of money testing for it.  There was talk of inaccurate tests, different tests and false-negative test results – no wonder so much confusion surrounds it all.  Then the really big bombshell, the accurate test appeared to be available at a cost of £11 per unit to the NHS.  So we were effectively being told that our daughter passed away for £11!  That was it – we weren’t taking that laying down but we were highly confused it was 2014 – surely the NHS, medical practice and procedures were better than this.

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