An Amniotic Fluid Embolism or AFE is a rare condition that can occur during child birth. The exact causes of it are still unknown and much of what is known appears to be based on the circumstances that are involved.
The circumstances are often so common that it is actually difficult to diagnose. Especially as the symptoms of an AFE can appear to be a number of things and thus in many cases it’s not until after other conditions are eliminated that it becomes clear that an AFE has occurred. Even then in my situation, it was only officially confirmed after the post mortem and the findings of the inquest. Some women do recover from an AFE but as it stands fatalities are high. The exact numbers do vary but are believed be similar in Europe and the US.
In my situation my wife had a complication during labour which required her to be rushed into theatre for a cat 1 emergency c-section. I wasn’t alarmed at this point, as my eldest son had been born via c-section. So all had seemed as well as it could be and she subsequently gave birth to our son. She was then taken into the maternity ward to recover. It was only after complications with her recovery that she was subsequently rushed back into theatre as it was clear that something was seriously wrong. It was at that point that I became extremely worried.
I am finally writing this up just shy of 5 years after my wife died. In that time I have met and become friends with, both in person and online, many other widowers. But I have only met one other man whose wife has died as a result of an AFE. In some ways this adds another layer of difficulty in dealing with what has happened. Many other widows and widowers who have lost their spouses or partners through more commonly occurring conditions, are available to each other to share their experiences. There are charities and various organisations dedicated to specifically support them. But because AFE is so rare and so little is known about it, the support organisations struggle to provide a specific level of support that is required after a mother has died in these circumstances. That said, the support organisations do an amazing job and I will be dedicating a post on this just to the cover that.
With AFE, answers are far and few between. Typically you want to know what has happened, why has it happened, could it have been prevented and was someone at fault. An inquest only states the cold hard facts. Specialists who are brought in to give evidence, stand there having no relationship with your wife. Yet they give information about her in a professional and very steely manner. I wish they were more empathetic, more willing to treat my wife as a person rather than just as body that they have performed a post mortem on. I get that it has to happen this way but it doesn’t make it any easier.
In the UK there are no public facing organisations specifically set up to monitor and report on AFE. In the US, the Amniotic Fluid Embolism Foundation have taken on the role of providing the outward facing monitoring and reporting on AFE. Not only that but they actively campaign to bring about more awareness both in the public and within the medical profession in the hope of bringing an end to AFE. As part of their campaigning they started a hashtag #endAFE. They have a comprenhensive range of facts about AFE that is worth reviewing for anyone who wants to know more.
It has taken a while and has been very difficult for me to write this. But I think someone needs to start telling the story of AFE so that others no they are not alone.