Budget day, and amongst the speeches, commentary and analysis on the airwaves, 10-year-old Cork boy Adam Terry had one request;
"I want to be heard of, I want people to assess me and treat me and make sure I don't feel any pain and if we're lucky, maybe even the surgery."
The surgery he’s referring to is to treat his scoliosis. 10 months ago, Brian O'Connell told Claire Byrne the story of the Terry family in Cork and the then 9-year-old Adam who had been waiting over 4 years for scoliosis surgery. At the time, the family was optimistic; there seemed to be momentum. Since then, everything has stalled.
Brian revisited the Terry family who spoke frankly about how they feel let down and are losing confidence that the healthcare system can deliver for Adam.
Adam has daily challenges; Marfan Syndrome, a heart condition, constant pain. He was told his case was urgent 4 years ago. The curvature of his spine is now impacting on his internal organs. Mum Christine told Brian about receiving the news that Adam’s much-needed surgery had been pushed out again:
"We honestly couldn't believe it. Adam was down to 18kgs - I'll just remind you that Adam is 10 years old. At that point his day to day quality of life was horrendous, and the hospital knew this. We just honestly couldn't believe that we were going to have to wait another 6 to 9 months. But again, you know, we came together, me and Adam, we thought, do you know something, we’ve waited 4 years in total, we can wait again."
And the decline in Adams quality of life has naturally had an impact on the whole family and now to add to the list of complications, Adam has had to join the CUH pain management team:
"The chest cavity is now making direct contact with the pelvis, so you've bone on bone. Adam was in so much pain, I was so worried about what was happening internally [...] The spine is impacting his lungs, his stomach, he has a heart condition; he actually has an aneurysm. It's the worry of what is actually going on inside and what could happen that's very hard to deal with; watching your beautiful child suffer. "
The complexity of Adam's case is one of the reasons why the surgery has been delayed – a large multidisciplinary team will be needed and Adam’s underlying conditions complicate things further. However, the family have been told that had Adam had his surgery years ago, it would not have been such a complicated procedure:
"Every day he’s being left, it gets worse."
The family is now considering treatment in London's Great Ormond Street Hospital, but this type of surgery would require follow-on care, meaning the family would have to stay in the UK. At their last consultation in Crumlin, they received the update that the type of surgery originally planned was no longer a possibility, and Adam may not even survive it. A different type of surgery is now needed; one that may not have as positive an outcome as was once expected. Christine continued:
"Pain might actually be something he might need to deal with now every day, which is again very hard to hear. But I'm sure my amazing little boy will get on with it. I'm upset now and I'm crying but that's pure anger and rage and frustration at the whole thing., I'm exhausted from it. And I hate saying that because [...] I'm the one who's well. I'm the one who's healthy. Can you imagine how Adam feels? I need Adam to know that I will go to the ends of the earth for him to get whatever treatment he needs to get."
Adam’s story has taken another heart-breaking turn as now he's unable to attend school due to the constant pain with which he lives. Accessing home tutoring hours is now another battle the family has to face.
Adam also very much wants his voice to be heard and was the driving force behind the interview – and began his chat with Brian talking about his pain:
"I describe it as in almost paralyzing. It's really sore and sometimes I have to lie down and roll around for it to actually stop. Sometimes I have to crack my back to actually relive the pain. [...] I feel like I'm just at the bottom of the barrel and nobody's coming out to find me in the lost and found [...]To be honest sometimes I feel like I'm crying myself to sleep because it's so unfair. It just makes me angry, and frustrated, and sad."
And now loneliness is a fresh challenge for the 10 year old:
"I really miss all my friends. And it's actually kind of getting harder to socialise because sometimes I can't even speak because I'm worried I'm going to cry, and I don't want to cry."
You can hear Adam and mum Christine’s full interview with Brian O’Connell on Today with Claire Byrne here.