I was standing in the middle of a busy hospital, in
Edinburgh at the height of the Festival; most of my family were within 5 miles
of where I was, but I felt lonelier then I ever had before – or have since. I
was outside of one of the operating theatres in the Royal Hospital for Sick
Children, or Sick Kids as it is more commonly known. I had just kissed my 2-day
old son on the forehead and watched him wheeled into theatre.
There are many books and websites dedicated to parenting, not
that I had read many of them, but none of them prepare you for this. To be fair,
I have my doubts as to how much they actually prepare you for any of parenting,
but that’s a whole other story. Actually, nothing prepares you for this.
Looking back, I feel like I got through all of it mostly intact. Perhaps only
by the skin of my teeth, but I guess that I did get through it.
How did I come to be standing outside of that operating
theatre?
My son, Christopher, had been born two days before in the
Simpsons Maternity Unit in Edinburgh. The birth could have been less traumatic
(an emergency C-Section), but all seemed to be well and fatherhood was a happy
place. Early afternoon on the day after he was born my in-laws persuaded me to
tear myself away from the wee man and his mum and go for some lunch. Halfway
down Leith Walk ‘the call’ came – some routine tests had shown up something
unusual. Back at the hospital I heard a diagnosis that has become part of our
lives ever since. Tracheo-Oesophageal Fistula with Oesophageal Atresia (TOF/OA).
When the doctor told us, I felt like my entire being had been flushed into the
void. So many questions flooded into the vacant space. Not least “What is it –
and can you fix it?”
The answers to those questions came at Sick Kids – TOF/OA is
a congenital anomaly where the oesophagus doesn’t quite form correctly and the
upper part finishes at a dead end in the upper chest (the OA bit) and the
stomach end is attached to the trachea (the TOF bit), and yes, with a bit of
radical re-plumbing, it is usually fixable. Fortunately for us, Sick Kids is
one of the leading centres for repairing TOF/OA and one of very few at the time
that were doing the repairs using ‘keyhole’ surgery. Some light was creeping
into the darkness.
After the longest afternoon of my life, back at Simpsons
with my wife, family and some friends, the phone rang, and we got the news that
the surgery had gone well, and that Christopher was in recovery. The collective
sigh of relief almost blew the windows out of the rather overcrowded side room
that Freya had been moved into by the thoughtful midwives.
Thus began a long journey, which we are still on. Medically,
this has included numerous trips back to Sick Kids, some planned, but most not,
and a spell in Yorkhill in Glasgow for heart surgery. The physiology of a TOF
child means that food can quite easily get stuck – sometimes it can be
dislodged by judicious application of fizzy juice (Irn Bru works a treat!),
though it often requires an endoscopy to wheech it out. Along the way, we discovered
the wonderful TOFS charity, appeared on the STV evening news and in various
newspapers (they took a particular interest in the ‘medical’ applications of
Irn Bru), and generally experienced a very different baby/toddlerhood than we
expected. Now, Christopher is almost 12, and we are in a fairly good place,
relatively speaking. He still has annual MOTs, and we as parents are also still
dealing with the psychological aftermath.
Which brings me at last (at last!) to the actual point of
this blog – the mental toll that this has taken on my wife and I. We have not
just been parents, we have been carers too. We have learnt things that most
parents never need to know, we have had experiences that are probably the stuff
of nightmares for most parents – and still, compared to others we know, we have
had it relatively easy.
It seems to me to come in two parts, like many things in the
medical sphere – acute and chronic.
The bits I think of
as acute are the obvious stress points – the chest infections, the operations,
seeing his heart rate somewhere north of 200 bpm. The chronic is the half-life
existence – in and out of hospital, nights in camp beds on wards, wondering
“what next?”, watching him like a hawk as he eats his lunch. This makes up the
daily routine when your child has issues like this. Also, there is the guilt –
did I somehow cause this? Is there something that I am missing?
In a way, the acute parts are almost easier to cope with –
there are people there all the time, sharing the burden, watching out for you. The
chronic parts build up over time, there is often no telling when it is going to
tip over into ‘too much’. Ultimately, I think that you learn to spot the signs,
and become better at knowing when to reach out. Freya, my wife, found the guilt
side of things particularly difficult – she felt that having carried him for
nine months it must be her fault somehow. Being a maths/science geek, I took
some solace in the statistics, sought to understand what I could, and tried to
use that to support her however I could. We got through it together.
That is even more important than it seems, because ultimately,
no-one else really understands the carer’s journey the way that they do. It is
isolation. Not in an uncaring way – we have been surrounded by love, support
and care every step of the way – but because no-one else, not even other “TOF
Families” walk quite the same path as you.
Perhaps this has made our current shared, but different path
through this strange land called Lockdown a little easier.
Along with the worries that we all share in the shadow of COVID
19, there are those specific to our son’s condition. TOF children are generally
more susceptible to chest infections than non-TOFs due to an aspect of the
condition called Tracheomalacia (also known as ‘floppy windpipe’) which means that
they can’t clear infected mucus as effectively. TOF/OA can also come alongside
other conditions, so it can become quite complex quite quickly. In this, we
have been truly fortunate that the TOFS charity has been able to give support,
and act as a conduit for advice direct from some of the foremost experts in the
UK.
There is of course, also the worry that Christopher could
get food stuck (although he hasn’t had a real issue for a few years) – would we
be able to take him in? Obviously, we would not want to burden the NHS any
further either, so he has been well warned to chew carefully! While these
issues are fairly specific to our situation, these, I am sure, are the sort of
things that all carers will be worrying about.
