Our Liver journey started on the 24th October 2017 with a simple blood test at the local hospital.
Billy was 18 days old and life was bliss before this moment, except that half of our house had been demolished for an extension.
A couple of days earlier our beautiful Health Visitor had arrived on her first home visit.
After an initial conversation, she asks if she could examine Billy.
I passed Billy over and she held him in front of her in both arms, she moved towards our tiny front room window and was tilting his head downwards.
This was my first experience of ‘The silence,’ I now know more than ever this is not always a good thing when it is paired with a concerned face.
I asked ‘Do you need more light?’.
There seemed no point in asking ‘Is everything ok?’ as the answer seemed clear by her facial expressions.
She said ‘That would be helpful’, so after agreeing the front room lights where to dull, we retreated to the garden.
As the cold air touched Billy’s face, he frantically wiggled trying to get back into his warm blanket, like we do on a cold winter’s morning.
He then opened his eyes disapprovingly, at this point she stopped looking and moved back towards the back door and smiled with her lips together.
Not a happy smile at all, just an acknowledgement.
A smile of ‘I want to be happy but I’m going to say some think bad in a minute and I’m just preparing you’.
We went back inside and sat back down.
She explained that newborn jaundice is very common, but this is normally cleared within 2 weeks, at this point Billy was 16 days old.
On a later visit the Health Visitor explained that the eyes were a dead giveaway and in her opinion the colouring of liver disease to childhood jaundice is very different.
She went onto say, ‘I would like to send Billy for a split bilirubin blood test’.
First complication, registering Billy at the doctor’s surgery.
At the time of Billy’s birth, no chid could be referred to the hospital without being registered at the GP.
But, to register you needed a valid birth certificate.
Thank God, this had been done the week earlier.
So, after several forms we had a date, the 24th October 2017.
On the morning of the blood test my mother offered to take me to the hospital, so Alec could help my dad up the allotment.
I wasn’t able to drive due to having an emergency caesarean section.
After navigating the outpatient department and getting bloods out of a newborn, we where back in the car and off up to the allotment.
After a 45-minute commute we were there and the sun was shining.
Alec came to the gate to open it and the phone rang, not a number I recognised at the time
4980
Hello, It’s Southampton General Hospital.
Me- Hello
Is this the mother of Billy Twitchen?
Me- Yes
We would like you to bring Billy back to the hospital immediately for further tests.
If you could report to G1, they will tell you more there.
Is there anything else I can help you with today?
Me- No, thank you, bye.
I put down the phone in shock.
I looked at Alec and said, they want Billy back in for further tests immediately.
Alec offered to come and I said it’s probably nothing, mum can take me.
On arrival the doctor looking after us explained that Billy’s split bilirubin test had predominantly been conjugated Bilirubin, which would indicate liver disease.
This with the jaundice, pale stools and dark urine highlighted the need to investigate.
Over the next 2 days, our local undertook many tests from urine, stool samples, endless bloods and an ultra sound.
Also, on day 1, Billy was taken off breast milk and put on a special formula.
If I remember rightly, this milk was partially digested to help absorption as children with liver disease struggle with this.
All I can remember vividly is the smell, it resembled curdled milk.
Billy wasn’t too happy with this change but soon got the message that this was the only option.
Unfortunately, this smell never went away as it tainted his skin with the smell.
At the end of the second day, we were moved into a private room.
I joked very light heartedly with Alec that it must be some think serious to segregate us.
We both laughed and discussed how well Billy was.
Then amongst all the smiles, the doctor entered to present his findings.
This conversation was quite long but all I can remember was, Billy may have biliary atresia (liver failure).
It’s funny how shock interferes with the brain, in the moment I stopped listening and kept looking at Billy in amazement.
No tears, just silence.
At the end this lovely doctor gave me a pack of information to take home with me, with his number scribbled at the top.
He pointed at the number a couple of times and said ‘Phone me if you need any further information.’
I think he had realised my brain had shut off at the mention of liver failure.
He asked if we would wait, so he could confirm a plan with Kings College Hospital, he explained they would confirm or disregard the diagnosis.
I couldn’t quite comprehend in the moment, why we needed to go to Kings, as all the findings pointed to liver disease.
The brain was being irrational and was cluttered with dread.
I found out pretty quick that
Kings College Hospital was the largest paediatric liver centre in Europe and is one of the busiest in the world.
It’s 1 of 3 specialist liver centres within the UK.
The centres undertake diagnoses, treatment programmes and liver transplants.
Also, they are a big contributor in research within this area.
Billy was a lucky boy to have such a resource on his door step which is funded by the NHS.
Life may have been drastically different without the luxury.
Anyway, back to the story.
The doctor left us in the cubicle for about 30 minutes.
In this time the 3 of us hugged, cried, and asked repeatedly if the other was ok and reassured each other that it has ’t to be fine.
By the time the doctor returned, the emotions had settled a little.
He confirmed that Kings would like us in the following week for a 2-day assessment.
To be continued ………
On World Liver Day I would like to say a big thank you to all the medics and people that champion Liver Disease.
Every small contribution leads to a big gain.
Happy World Liver Day everyone x
Remember you may not feel strong but you are
Love
The Rose-Tinted Mum
The Rose Tinted mum 