I looked down at my hands in shock,
they were completely black.
I could no longer feel my fingers
and soon these hands would be gone too.
At that moment, I felt broken.
Incomplete.
My name is Tilly Lockey.
And this is my story.
I drifted in and out of consciousness.
My mottled skin was blue and grey.
And my eyes were pale
- stripped by jagged blue lines.
As the ambulance sped away,
my vitals triggered one alarm after another
but all my mam could do was wait.
Wait to see If I’d survive the night.
I was just fifteen months old.
One night in January 2007,
my mam was woken by the sound of whimpers from the nursery.
I was running a temperature
but I was also at the age of teething,
so my mam just gave me some Paracetamol Syrup and returned me to bed.
But a couple of hours later, I whimpered again.
When she picked me up this time, I got sick.
She brought me to bed with her and my dad so they could keep a closer eye on me.
In the morning, my mam noticed my breathing was quite rapid
and rang the doctors straight away.
In the waiting room, I sat on my mam’s knee,
unable to lift my head off her chest.
The doctor checked me over, looked in my ear and said
“Ah, there’s the problem.
It’s an ear infection.
Just pop to the pharmacy, pick up some kids’ ibuprofen
and she’ll be right as rain in 48 hours.”
My mam was so relieved.
We picked up the medicine,
but I wouldn’t be better in 48 hours.
I’d barely be alive.
My nanna was in the middle of changing my nappy
when, underneath my clothes, she saw massive bruises.
It gave her such a fright!
She had held me so tenderly and gently
but now I looked beaten to a pulp.
She called for my mam.
When she saw the bruises herself,
her head spun.
This was clearly no ear infection,
but what was it?!
Normally she would do anything to protect her baby from injury,
but how could she defend against something attacking from inside of me?!
She ran to the phone and rang for an ambulance.
We were met at the emergency room by ten medics.
And after they treated me,
they sat my mam down and broke the news:
I had a severe case of Meningococcal Septicemia Strain B,
a bacterial infection of the brain and spinal cord. An infection of the blood
Then she said the words that no mother should ever hear:
that I was going to die.
My mam looked at me and got lightheaded
as if she was in a dream.
She started to be sick and apologized for it.
The doctor told her it was a normal reaction.
Then my dad arrived.
As if it wasn’t bad enough for my mam to hear the news,
now she had to break it to my father.
“Tilly’s going to die.”
But my dad just looked right back at her
and said,
“No, she won’t.
It’s Tilly!
She eats all of her vegetables and is such a positive, happy little girl.
She won't die!
She can't!”
I was swollen, pale,
and the bruises were taking over my entire body.
The doctors told my parents,
that in order to give me the best chance of survival,
my body needed rest.
They would shut me down and keep me alive by machines only.
My parents kissed me and whispered to me to keep fighting
and to keep listening to their voices.
Then the doctors made a critical decision
– they were transferring me to Newcastle General,
where I could be seen by experts in dealing with meningitis cases.
They loaded me into an ambulance,
where I’d need a blood transfusion along the way.
My parents were not allowed to ride with me
despite being told I could die before I even reached the hospital!
My mam looked right into the eyes of the nurse
and asked him to look after me.
He promised to do all he could.
My parents rushed home to pack my stuff
because there was no telling how long I’d be hospitalized.
As much as she resisted,
my mam found herself consumed with horrible thoughts
of having to organize my funeral
and sending future birthday and Christmas cards
without my name on them!
She tried to pull herself together
“No more negative thoughts! It doesn’t get you anywhere.
From now on, only positivity!”
She grabbed my little cream teddy bear she bought when I was born
and they drove to the hospital,
not knowing if I had even made it alive...
“I have good news, Mr. and Mrs. Lockey.
Your daughter survived the journey.
Would you like to see her?”
My parents were beside themselves with joy:
“She made it!
She must’ve heard us when we told her to never let go!”
But their pleasure turned to shock
when they got to my bed and saw how tiny and helpless I looked
surrounded by machines and with tubes coming out of my body.
The closer they got, the worse it looked.
The disease had taken over.
I was swollen with red wine-coloured septicemia patches all over me.
I didn’t look human.
They kept asking the question…
“Is she going to live?”
They got the same answer every time:
“We don’t know.”
For four days,
my parents just sat next to my bed and prayed.
The next morning, the medical specialists came in,
looked at my mam, and smiled.
He told everyone I was getting better!
That my body had responded well to antibiotics
and that I must have incredible strength
because somehow, I was fighting it!
Everyone cried tears of happiness.
My mam collapsed to the floor,
relieved, exhausted, and grateful.
“However…” he said,
“the disease has really damaged her body.
We won’t know to what extent until everything settles.
There may need to be amputations.”
Normally this news would be devastating,
but at that point,
he could have said anything to my parents.
They were getting their baby back!
Anything else
they could deal with.
With my condition stable,
my mam and dad were finally able to go home and rest.
Then the phone rang with good news:
“She’s just opened her eyes,” the nurse said.
“Do you want to come and say hello?”
My mam and dad ran as fast as they could!
There I was, still tied up to machinery
and looking like I had been beaten up badly,
but with my little eyes open wide,
looking around and wondering where I was.
“Would you like to hold her?”
a nurse said to my mam.
“Oh my goodness yes!” my mam answered,
and together we sat on a nursing chair, cuddling.
“This is all I need in life.
I don’t need anything else,” my mam said.
“Just my family and my healthy babies!”
When I regained some strength,
I was transferred from intensive care unit to the recovery ward...
This was quite stressful for my parents
as I went from being looked after 24/7 by nurses
to my parents having to step in and take care of me while I recovered.
It was hard for them to see me like this
and despite them doing everything right,
I still managed to develop a secondary infection.
Causing me to need my tenth blood transfusion!
They were confused and terrified.
If I was getting better,
why was this happening?!
It had been weeks since the trauma of contracting Meningococcal Septicemia,
yet I hadn’t said a word or smiled
or shown any emotion at all.
I just laid there in my hospital bed
staring at my hard-black hands, studying them.
Maybe realizing for the first time
just how useless they’d be
We were finally allowed to go home
but were told to come back in a couple of weeks for amputations.
My mam was reading the sweetest story to me and my sister in the living room
when she noticed a little black thing on the cream sofa.
Thinking it was a piece of fluff,
she picked it up and was immediately horrified.
It was my toe!
The doctors had warned her that when the body heals itself,
it sometimes pushes the dead part off the end
- but there’s simply no preparing for such a shocking sight!
My mam tried not to draw attention to it.
She held it in her hand until she finished the story,
then put it in a plastic bag and brought it to the hospital.
In the exam room, another toe came off
as they were pulling my tights down my legs!
My mam asked,
“What do I do with her toes?”
“Ah, just put them in the bin.”
“The bin?!”
This was part of her baby!
A few days later,
I was back in the hospital for my amputations.
My parents discussed with the surgeon
to amputate straight across the wrists
rather than leave me with part of a hand or finger.
How horrible to have to make those decisions!
The doctors gave us a minute alone.
And my mam just looked at me, heartbroken.
I was so little
yet had already lived through so much.
She held me close and made a promise.
She promised me I’d be okay.
That one day she would give me, my hands back!
The surgeons came back in.
It was time.
They wheeled me away to surgery,
leaving my mam and dad alone again, helpless.
Hours passed.
What was taking so long?!
Was this normal?!
My mam wondered how I’d manage with no hands?
How would I live independently?
How would I make myself a cup of tea
and hold a heavy kettle of boiling water?
My mam and dad’s eyes met,
each of them wondering the biggest question that no one dare say out loud:
Would it even matter?
Would I even survive the surgery?
They took each other’s hands and squeezed.
Holding on to each other.
Holding on to hope.