The second chance feeling

Christine instinctively knew that there was something wrong with her little boy, Idris, and is very glad she followed her gut reaction as she explains here.  

Let me take you back to the spring of 2023. My happy, healthy, and beautiful little boy (who was 18 months old) suddenly woke up with yellow eyes. No other symptoms at all. I asked my husband, Rhys, who attempted to slow down my now accelerating thoughts, but my mother’s instinct kicked in and I just knew something was wrong. 

 That day in May, we rushed to the GP, who initially dismissed our concerns. Thinking ‘eyes’, our next stop was a high street optician, who advised us to call the 111 service for a view. We were admitted to our local hospital that same day for initial liver function tests and I distinctly recall the ALT being over 50 times the World Health Organisation recommendation. 

Fast forward two weeks in our local hospital and two weeks at Birmingham Children’s, we left with the possibility this was all caused by a virus that was going to go – and we could resume our family life together. 

But Idris’ blood tests didn’t get better. We will always be thankful that apart from the yellow eyes and blood tests, there were no other ‘concerns’. 

In the summer we were invited back to Birmingham’s Children’s hospital for a liver biopsy. I should say here that we can’t praise the staff at Birmingham highly enough for all their help and support, both then and now. 

We were informed that, like the toddler in the recent EastEnders story line, Idris had autoimmune hepatitis, something we knew nothing about.  So of course, when we all got back to the hotel room, miles away from home, around the corner from the hospital while Idris was sleeping, we turned to Google (other search engines are available!). 

 We couldn’t believe what we were reading. Life expectancy, life impacts, fatigue, the lists went on and on. Nothing positive. Our hearts sank, and the tears streamed from our eyes – we had no idea what life would hold for Idris, or even if he would live! In this very moment life was very dark, and we began to feel so angry. Why him?  It felt like our world had ended. We felt hopeless, lost and full of uncertainty.  

 This is where second chances prevail… 

We decided to get beneath the top line of the articles and get to grips with the disease and our new lives. We reached out to the British Liver Trust, Children’s Liver Disease Foundation and the Autoimmune Association, all of which have great insights and knowledge which we have been able to resourcefully use. We have even been able to impart our knowledge at our hospital appointments, which has influenced the care pathways that Idris has received. Also, a plug for an autoimmune hepatitis (AIH) Facebook Support group – which have always been there if we need some rapid support. Thank you!

We are extremely proud of our little boy. Despite the hospital appointments, daily medication, scans, blood tests (which at times have been daily), biopsy, bouts of isolation and many other challenges – he remains happy. Which, when you step back, is all you want for your children. 

Now three years old, Idris is hitting all age- appropriate milestones, never refuses his daily (and lifelong) medication and is always well mannered. He has taken all of this in his stride and has remained positive and his happy wicked self. He’s a real-life charmer who lights up a room with his presence and we look forward to every day we spend together – until he is old enough and too cool to ‘bother’ with his parents!  

 For every mountain Idris may climb we will be there every step of the way. This whole journey has taught us so much of how to be vulnerable, how to accept help and most of all how someone so small can be so mighty.  

 My advice to any other parents who find themselves in our situation would be: 

• Trust your instincts and don’t be afraid to question what you’re told.  

• Breathe, don’t take everything at face value, especially from online sources.  

• Be prepared for appointments and, most importantly,  

• take time for yourselves.  

When Idris was diagnosed, I really struggled to come to terms with it—most of the stories I read involved much older children, which made me feel even more overwhelmed. It’s okay to feel anger and sadness during those early days. I spent a lot of time in a dark place, crying and refusing to accept that this was happening to my baby. I couldn’t see a way forward, and I felt trapped. Idris, fortunately, remained his usual happy self, but he had no understanding of what was going on. I was consumed by uncertainty. 

Looking back, 18 months on, I would say to any parent—be kind to yourself. I didn’t realise just how important this was. Allow yourself to accept help, and remember there are treatment options, and the side effects are not always a given. These days, I treat Idris just like any other child. I don’t want AIH to define him. Every night, I tell him, “You are brave, smart, beautiful, and above all, you’re capable of anything.” Time truly is a healer. I didn’t believe it at first, but now I know it to be true. 

Take time to celebrate, reflect, and heal.