I’ve shared a couple of posts on this blog about one of my best friends Emma, whose son (and my godson) Freddie has a rare liver disease. She hopes that by talking about her situation she might help other parents thrown into the dark, frightening world of childhood illness.
Personally, I just think her story is an inspiring one that deserves to be shared, and not least because £36,000 has been raised in Freddie’s name in two years. They’re aiming for more with a summer ball this year.
Here, Emma talks about the second year after her son’s dreaded diagnosis.
It’s the 4th of March. Which is not only my fantastic father-in-law’s 70th birthday, it’s also two years to the day my then six-month-old baby was diagnosed with a life-threatening liver disease.
If you’ve followed our story then you will have read the piece I wrote a year after Freddie was diagnosed. It was my honest account of the first year of living with liver disease.
Writing that piece was cathartic. It off-loaded my heavy heart of everything it was carrying and cleansed my head of the confusing thoughts I was holding onto.
But the 12 months after that first anniversary may have been my hardest, because I would say I reached breaking point.
From the moment Freddie was born we’ve been on a roller coaster. One that seemed to have a never-ending bump in the track.
From him being born in September 2012 to his fifth month of life we had endless tests and scans, and a biopsy, then he was diagnosed, referred for naso-gastric feeding which quickly led to a gastrostomy tube being inserted under general anaesthetic.
His kidneys started leaking salt so he needed sodium added to his feeds. We found blood in his nappy so had to dial 999. We had unexpected stays in hospital after test results. This is only what I can remember.
The year it got serious
But 2014 was the year that things got really serious. Freddie’s condition and quality of life was worsening. My husband Phil and I saw it first hand and dealt with it every day and night.
In August 2014, when I could see his symptoms worsening weekly, I had a teary conversation with Freddie’s fantastic dietitian, Kirsten. She listened sympathetically as I cried down the phone and told her all my fears and anxieties. His skin itch from his poor bile flow was making him inconsolable and his body was being taken over by xanthomas.
Soon after, we had an appointment with the consultants. I usually go into Freddie’s appointments one step ahead of everybody, prepared for what they’re going to tell us.
But on this occasion I hadn’t done my homework.
We were told Freddie’s symptoms were now classed as ‘severe’ and he couldn’t continue with such a poor quality of life. That gave us two options: a ‘biliary diversion’ or a liver transplant (a transplant was the last option).
The biliary diversion was a six or seven hour operation involving Freddie being cut open and re-plumbed in order to drain from his body the bile that was causing him such deterioration and discomfort. There was no guarantee it would work and there were cases where it hadn’t.
When the consultant explained the operation I wept. I wept for days after that too. It was the point I hit rock bottom.
I really didn’t want him to go through the operation but I didn’t have much choice. That’s a hard thing to comprehend for your baby.
I had struggled through the previous 18 months of Freddie’s illness, cried a lot and talked loads but I had come to a point of being able to cope with it all.
But hearing a consultant discuss the next process in order to make your seriously sick 23-month-old baby more comfortable was the point I lost all focus.
I hated what he and we were being faced with. I’d had enough now. I wanted out. Read More →