I wrote this September 2003, by way of a thank you to St.Mary's PICU

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.

2 Replies

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  • Thank you so much for sharing your story with us. I am so glad to hear that Iona is a little fighter and is now as fully able as any two year old.

    If there is anything we can do to help, please let us know.

  • wow, this brought tears to my eyes. my little boy developed meningococcal septicaemia and meningitis b when he was 7 and a half mths old. he spent 22 days on life support and his body was flooded with a gallon of water to keep his internal organs alive. he spent a total of 84 days in hospital, 7 of which were in bristol childrens hospital, i cannot fault the nhs for their unfaltering dedication my son received. he has had bilateral amputations of his legs< one below the knee and one through the knee, he also has accute renal failure which is being managed with drugs. he is now a 4 year old happy, very determined little boy which brings such joy to my life. i am so glad Iona is ok. god bless. catherine x

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