Iona, our first and only child, became ill on Sunday April 2003, in much the same way that many children her age do. Iona was 18 months old. It appeared that she was suffering with a stomach bug, and the symptoms continued through to Tuesday 8 April, when we took her to our GP.
After examining her, she told that us that she had a
gastroenteritis type bug, to ensure that she had plenty
of fluids, and to treat any fever with Calpol. Iona seemed
sleepy and lethargic, but we put this down to a night of
continued vomiting and lack of sleep.
Iona woke on Wednesday 9 April, still apparently
lethargic, but her right eye was almost closed. This
concerned us, and so we consulted my parents. My
Dad took my wife Claire and Iona back to our GP, who
shared our concerns and suggested that it “may be a
form of meningitis”. She gave Iona a dose of penicillin
antibiotic, and sent them to our local hospital, QEII in
Welwyn Garden City.
I met Claire and Iona at the hospital in the assessment
ward, from where we were quickly moved to the A&E
department. A team of doctors quickly surrounded
Iona and began to attempt to find out what exactly
was troubling her. It was around this time that the first
contact was made with St. Mary’s PICU for guidance.
Iona was rapidly becoming very unwell. Blood was
taken for screening, and she was checked from headto-
toe for “the rash”. A small patch, about the size of
a 5p piece, had appeared in Iona’s nappy area, and
another under her arm.
On the request of the consultant at St. Mary’s PICU
a CT scan was arranged, which showed a moderate
swelling of her brain. By now, Iona was losing
consciousness, and was slipping into a coma, believed
to be due to septicaemia and meningitis affecting her
brain. No further tests were requested. We were
advised that a retrieval team from St. Mary’s PICU
was on the way to attempt to stabilise Iona, as her
condition was rapidly deteriorating.
The team arrived, led by Clinical Fellow Mohammed,
and Nurse Sisters Clare and Wendy. They spent five
hours working on Iona. She was still very unstable,
continually fevering and her heartbeat and blood
pressure both erratic. She required assistance
breathing. A wound caused by a needle refused to
heal, and this caused further trouble, needing blood
product to attempt to help her to clot the wound.
Eventually the team felt the time was right to transfer
Iona to St. Mary’s for the continued specialist support
that she would need. By this time Iona was dependent
on a cocktail of drugs and a mobile ventilator to keep
her alive. The next problem was finding room on the
ambulance stretcher as the equipment Iona needed
took up all of the space!
We arrived at St. Mary’s PICU at around 11.30pm to
find Iona looking very peaceful among her tubes and
wires. A very surreal environment is the only way I can
describe the unit.
Iona remained on her cocktail of pain relief, antibiotics,
sedation, drives to control her heartbeat, and a
ventilator to assist and control her breathing. There
were so many pumps and drips, not to mention the
bleeps from the life support monitors, it was more than
just a little frightening. ‘What was going to happen to
our little girl?’
The coming days were to be the hardest of our lives,
watching Iona and hearing her condition described as
“no improvement”. There was still no response down
her left side and her eye, which had first concerned us,
was still unresponsive to light.
Friday 11 April brought good news. Iona had beaten the
septicaemia and her antibiotic treatment could be
reduced. Also her heartbeat and blood pressure had
stabilised, and she no longer required the drugs to
control it. This was also the day when Iona’s diagnosis
was confirmed to be pneumococcal meningitis and
septicaemia. She was now in a position to have a
detailed IMR scan, the results of which would be
checked by Great Ormond Street.
The report back was not good news: considerable
swelling and collections of fluid were apparent.
We were taken to the quiet room with PICU consultant
Dr de Munter, who explained the results. Her facial
expressions said it all. We were scared and had to ask
if our little girl would die. Dr de Munter replied that
she did not know, but that Iona was very seriously ill
and would probably be left with brain damage as a
result of her illness should she survive. Two of the most
frightening outcomes anyone could hear …
Saturday 12 April brought more bad news. Iona’s
sedation had been reduced to almost nothing, and
PICU consultant Dr Britto told us that“ he would have
hoped for Iona to be fighting against us by now”. He
went on to say, “we are a bit concerned, but we will
have to give her more time”.
Monday 14 April showed promise: Iona twitched her
fingers around her favourite blanket (she has a thing
about labels). The doctors wanted to extubate her so
that she would not become dependent on the
ventilator, but she was not ready.
Tuesday 15 April was more successful. We were asked
to leave whilst the doctors carried out the extubation
procedure. Around half an hour later we were told it
was a success. Iona gave a little cry when we went to
her. She was very weak, and her abilities very much like
those of a newborn baby. That was an extremely
difficult thing for us to come to terms with.
After all that had been spoken about as to the possible
outcomes, we were left wondering ‘is this it?’ - but
there was still hope. As Claire approached her, Iona
said quietly “Mummy, what you doing?”” - her voice
hoarse. She even managed a faint giggle when Dr de
Munter approached, and even played ‘peek-a-boo’
behind her hands!
On Wednesday 16 April, Iona was transferred to Grand
Union ward at St. Mary’s to continue her recovery and
to start her rehabilitation programme to relearn
everything. Her right eye remained almost fully closed,
and physically she had a lot to do. Her recovery to
date has been complicated, requiring further
admissions to Grand Union ward.
It is now Saturday 25 October, and Iona has improved
immensely over the past few months. Her eye has fully
recovered, and physically she is as fully able as any
two-year-old should be. Unfortunately, though, her
hearing has deteriorated to nil following her illness
and she is being fitted with hearing aids.
I feel able to write this story because of the absolute
dedication and amazing skills of those involved at St.
Mary’s PICU. They gave us our little girl back, and we
are and will be forever grateful to them.