Long time no diary: a partial explanation. (Warning:
contains largely
self-indulgent content not related to Free Software.)
My daughter Marianne was born on a highly auspicious date:
the 8th
August 2008, the most eightish date for 20 years. All went
reasonably
well; the paediatrician who checked her over at Newham
General
Hospital detected a heart murmur, but we were given an
outpatient
appointment a month away and discharged. It took a lot of
effort and
perseverance to establish breast-feeding, and her weight
gain was
slow, but she seemed otherwise to be healthy and doing well.
However, at the outpatient appointment at the cardiology
clinic at Great Ormond Street
Hospital, we
were told that Marianne had a heart defect: Tetralogy
of
Fallot. The cardiologist immediately reassured us that
this was
an operable condition with extremely good prognosis, but
that the
operation wouldn't take place for a while, as the bigger the
child the
better the recovery from the necessary open-heart surgery.
In the
meantime, the combination of the ventricular septal defect (the
‘hole in the heart’ which caused the audible
murmur) and
the pulmonary stenosis (a narrowing of the pulmonary artery, the
vessel responsible for taking deoxygenated blood to the
lungs to be
refreshed with oxygen), together with her
partially-overriding aorta
(the opening to the aorta being over the VSD) meant that Marianne's heart would
allow
deoxygenated blood to go around the body again without being
refreshed
with oxygen, and consequently would have to work
significantly harder
(leading to right-ventricular hypertrophy and also
explaining her slow
weight gain).
Although we had been reassured by the cardiologist, and also
the GOSH cardiac
liaison nurse
we spoke to, the diagnosis was still a shock to me: I think
I spent
about three or four days being completely unable to think
straight.
But the mind is resilient, and after a little bit it settled
down,
with the reassurance that many medical professionals: health
visitors,
dieticians, nurses, cardiologists and general practicioners were
available to help. Other sources of support were great as well:
family, colleagues, friends and neighbours, and even groups
on mumsnet
were extremely helpful and understanding.
And so life continued. Many of the normal stages of child
development
happened: first smile, sleeping through the night, not sleeping
through the night any more, playing with toys, discovering
wrapping
paper, sitting up, and beginning to eat food; all this
punctuated by
visits to the health visitor, cardiology clinic and
paediatrics unit.
And then, eventually, came the letter giving us a date for her
surgery: Thursday 5th March.
First there was the pre-admission hurdle to jump: various
measurements
to make, various blood samples to take, and the consent form
to sign.
Except that we couldn't: no surgeon was available, as they
were all
too busy. Fair enough; we arranged to come in the following
week for
that. It was at that point, signing the consent form for my
daughter's heart surgery, that I experienced shock and panic
again,
this time for the best part of a week: while the full repair for
Tetralogy of Fallot is a relatively well-understood
procedure (it's
been performed for longer than heart-lung bypass machines have
existed) the mortality rates are still of the general order
of 1-2%.
Because Marianne was outwardly healthy, it was very hard to
believe
wholeheartedly that this scary procedure was utterly
necessary, and so
it felt like I was needlessly making her play Russian roulette.
The 4th March rolled around, and we were essentially ready: bags
packed, all urgent items at work completed, contingency plans in
place. And then the hospital phoned: a more urgent case had
come up
and so there was no surgical team available for us; we were
rescheduled for the following week. To be fair, we had been
warned
that this might happen – even on the day itself, so
having a
day's notice was a bonus. Still, there was a lot to unwind:
not just
the various plans, but also our own emotional preparedness.
Back to
the normal routine, with an extra week of voluntary
quarantine for
Marianne (coughs and colds noticeably impede recovery from
operations).
There was to be no second stay of execution on the 11th
March: we were
given ‘starvation times’ for Marianne: no food after
2:30am, no breast milk after 4:30am, and no water after
5:30am. The
alarm was duly set for 4am so that she could get a last
stomachful.
Then we were all set; we set off in plenty of time to get to the
cardiac ward at GOSH
for 7:30am.
Once there, Marianne was weighed, and then dressed in a
hospital gown.
She then played with a set of coloured wooden stacking
rings, while Jenni and I debated the
merits of
the various colour combinations that she was inadvertently
modelling
– well, we had to talk about something. A
surgeon came
down to assess her: determining whether she was well enough
for the
operation to take place, and checking that she'd had nothing
to eat or
drink since the small hours. With a certain amount of
humour, she
drew a purple arrow on Marianne's chest: it is NHS policy that all surgical patients
should be
marked up before the operation, because there have been a
few too many
embarassing errors in theatre (amputating the wrong leg, and
similar).
As the surgeon put it, though, “there is only one
heart”.
Then we waited for the most difficult part: taking Marianne
to the
anaesthetists and leaving her there. We were allowed to
hold her
while the nitrous oxide was given; it took hold quickly –
without the wriggling which we had been warned might be a
possibility. And then we left the room, because it was what
had to be
done.
Waiting while your child is having surgery is not a pleasant
experience. Fortunately, the hospital is aware of this, and
enforces
a certain amount of activity; they require parents to sort
out their
hostel accommodation during this period, which involves
bureaucracy
and therefore takes time. Also, we hadn't had breakfast by this
stage, so that was a good thing to do, and we had been given
(not by
the hospital!) £10 to convert into a grey book. Even
extending all of these things as much as possible, it was
only about
two hours since we'd left Marianne (where the operation was
meant to
take about four hours in total), so it was an immense relief
that,
when we returned to the cardiac ward and a nurse was able to
telephone
the operating theatre, we were told that Marianne had been
weaned off
the heart-lung bypass machine successfully: in other words,
her heart
was beating again.
In fact, we were lucky: throughout our stay in hospital, we
never
really needed to be given any bad news. By the evening of
Thursday
(the day of her operation), she was taken off the
ventilator, able to
breathe for herself. The following afternoon, she was
removed from
intensive care, with her breathing and temperature no longer
needing
to be continuously monitored. Even the one complication, a
buildup of
air in her chest cavity, was rapidly dealt with, and her
chest drain
(a tube attached to suction, drawing fluid away from the chest),
pacing wires (to correct any irregularity in the heart
rhythm) and
intravenous lines (used for delivery of pain relief, mostly
morphine)
came out at lunchtime on Saturday, leaving her with a single
stitch
(not the only mark, of course, but the wound on her chest is
held
together subcutaneously). On Sunday morning she was able to
breastfeed, and she did so with enthusiasm and vigour; the
nurses then
removed her nasogastric tube, and told us that we were
likely to be
discharged the following day.
And so it proved: after one last echocardiogram, we were
given some
medicines (paracetamol and diuretics), an outpatient
appointment for
mid-April, and a discharge letter, and told to go home.
And, not
without some trepidation, but also with a great deal of
optimism, so
we did.
All of which is one way to say that, if I have dropped
patches on the
floor, failed to fulfil administrative duties, or ignored
requests for
assistance in whatever context: I apologise, but I have
had other
things on my mind. It seems to be common knowledge amongst
parents
that worry never goes away, but with luck the worries that I
experience will be less acute for a good little while.