When the going gets TOF, the TOFs get going...

TOF/OA - Tracheo-Oesophageal Fistula with Oesophageal Atresia.  A condition that means that a baby's oesophagus doesn't connect to its stomach (the "OA" bit) and that the stomach end of their oesophagus is attached to their trachea (the "TOF" bit).  There are many other aspects and potential complications, but that is basically what it is about.  It can be corrected surgically, usually soon after birth, but that has only been the case for about 60 or so years - before that, there was nothing that could be done.  Five years, two months and and about 6 and a half days ago, I had never heard of it.  Now, I probably know more about it than I know about any other medical condition.

On the 7th of August 2008, my world changed completely.  For the second time in 24 hours.  The first was relatively easy (for me at least, for Freya, not so much) - I became a father for the first time.  The second was not so easy for either of us.  There were, for me, two heart stopping moments - number one was the phone call that cut short my, and Freya's parents quest for lunch and sent us rushing back to the Simpson's.  Number two was the moment when a doctor  there did their best to describe what was wrong with Christopher (it is a rare condition and not the doctor's area of speciality).  Words cannot describe the way that I felt.  It was as if someone had flushed every fibre of my being out into the void.  Those are words, but they don't come close to describing the intensity of the feeling.

The rest of that Thursday is a bit of a blur.  Seeing Christopher in the Special Care Baby Unit at the Royal - looking like a giant next to the truly tiny miracles that surrounded him.  The trip through Edinburgh to Sick Kids with Freya's dad.  Practically being frogmarched into the chippy along from the hospital by the great man that I am now proud to call my father in law, who was smart enough to know that I actually did need to eat, no matter how trivial my own welfare felt to me at the time.  Hearing (with a not inconsiderable amount of relief) the much more positive prognosis for Christopher than the one that I had imagined from one of the surgeons that would be involved in his operation.  Holding the Wee Man in my arms for what seemed like no time, but was actually about two hours, until the nurses persuaded me that I'd be better off going to bed in the little room that was available to me, just along the corridor.  Not thinking that I would be able to sleep. but actually conking out as soon as my head hit the pillow.  The dreadful wrenching pain of separation, kissing him before he went into theatre.  The eternity of waiting in the side room at the maternity ward, and the explosive collective sigh of relief when we heard that the surgery had gone well.  I thought that we could have blown the windows out!

It has been a long, winding, sometimes joyful, sometimes painful road since then, but it has been massively easier with the help of our families and friends.  Many of those friends are ones we would likely never have met but for TOFS - the support charity for Christopher's condition.  It is not a big charity like the ones that have ads on the telly and bus stops and the like.  It is a small but dedicated group who work to support people affected by TOF, spread awareness and support research into the condition.  It is a relatively small charity, but it occupies a huge place in our hearts and minds.  We owe them so much.  

Also important is that much maligned entity, Facebook.  It is not all "selfies" and amusing cat photos - the TOFS groups on there are a vital and useful part of the "TOF family".  

Now, we are in a position to offer some help and support to new TOF families - I am "TLC" (TOFS Local Contact) for Scotland, which means that I call new TOF families and welcome them to the larger "family" and offer whatever help and support I can.  It feels great to be able to "give something back" - a cliche, I know, but true.  

Mainly, I aim to offer friendship, an ear to listen and understanding - a real sense that there are people out there who understand some of what they are going through, although everone's journey is a little different.  A feeling that you are not alone can be a powerful aid.  At risk of sounding arrogant, I know that this can help; but I know that because I know that it helped us a lot to hear from other TOF families when we were just starting our own journey down the TOF road.  Also, I hope that Christopher and his story can inspire and give hope to others because of how far he has come and how much he has achieved in 5 and a bit years.    

To try to get to the point that I think that I am trying to make here, this week (12th to 19th October) is TOFS awareness week, so I thought that I should try to spread some awareness.  If you wish, follow the link below and learn a bit more.  Maybe tell someone else about it.  Roughly one in 3,500 babies is born with this condition.  It is rare, but that is still roughly 20 a year in Scotland alone, if my back-of-the-envelope calculation is correct.  So, please be aware, understand, if you know someone affected by TOF, support them by sharing their experience and and "being there" for them.  It means more than you would believe.

http://www.tofs.org.uk

Peace for our time?

75 years ago this week, the Munich Agreement was signed by Neville Chamberlain, consigning Czechoslovakia to Nazi domination.  Whether or not his actions made sense at the time, the gift of 20-20 hindsight suggests that it was most likely a mistake, we will never know what would have transpired, had Britain and France stood up to Hitler then.

By coincidence, I am reading "Berlin Diary" by William L. Shirer, an American journalist who broadcast from Berlin and around Europe between 1934 and 1941 - seven years that saw Hitler's power grow and Europe slide inexorably into war.  It gives a fascinating insight into what happened and how ordinary people came to believe in Hitler's twisted view of the world.  Shirer risked arrest, expulsion and possibly worse to bring his view of the Third Reich to the outside world.  He also shares his views on how America's then powerful Isolationist Lobby risked playing right into Hitler's hands.

I have long been fascinated by history, particularly military history for a long time.  Not for any ghoulish reasons, it is not a morbid fascination.  Reading Shirer's book has possibly helped me come to realise why I am so fascinated.  

As a scientist at heart (and in my head!) boundary conditions, that critical zone between yes and no, where many of the most fascinating things in science happen - the event horizon of a black hole for one, have always intrigued me greatly.  They occur on a human scale too - I feel that I have spent most of my adult life enmeshed in the grey area that is the boundary between depressed and not depressed.

That period in the late 1930's that Shirer wrote so eloquently and perceptively about was also a boundary - between war and not war.  What tipped the world over the edge?  What drives ordinary people to do the heroic or the horrific?  These are the human boundary conditions that can make history such a compelling subject.

I have heard war described as "the continuation of politics by other means" (von Clausewitz originally, I think) - it seems to me that really, war is the failure of politics.  The failure to steer us away from, or the crazed urge of some leaders to steer us towards, that most bloody boundary condition between not war and war.