Meet Julia and her son, Arthur

Arthur and mum, Julia

A printed 3D heart replica can influence and enhance patient care for the better. It allows surgeons to not only meticulously plan complex heart surgeries, but to do so based on each patient’s unique condition and circumstances.

We were recently privileged to hear Julia speak honestly about what this remarkable model meant for her son, Arthur. Nothing demonstrates the restorative impact of such vital work more powerfully than hearing from someone it directly affects, so we’re grateful to Julia for sharing her family’s story.

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Julia Shields

I held my son's heart in my hand. So small and precious, so futuristic and problematic – yet even with its faults, there is something undeniably beautiful and miraculous about this heart. Its complexity has shaped our life as a family and made me someone I sometimes don’t recognise.

While a 3D model may seem small and insignificant to many, it has changed the path of my son’s treatment hugely.

Arthur and his twin were born at the John Radcliffe in Oxford but moved to the University Hospital Southampton for his first surgery at just nine days old. We knew about his congenital heart condition so this was expected. Arthur’s surgeon was Mr Viola, but we were cared for by him and a team of cardiologists. After a tricky recovery, requiring another surgical procedure, we moved back to the John Radcliffe as a step towards being able to go home.

We knew Arthur would need another operation and as he came close to his goal weight for this, Mr Viola and our Oxford cardiologist Dr Jones discussed the merits of a 3D model. Mr Viola was adamant that he needed it, while Dr Jones felt it was unnecessary.

For the 3D model, Arthur would need to be put under a general anaesthetic for a CT scan. Although they tried, Oxford couldn’t get a cannula that was big enough for the contrast dye to be administered. It was decided that we would be transferred back to Southampton for this. Dr Jones still felt strongly that the model was not necessary, and as our primary cardiologist, his view mattered. His strong feelings against the 3D model weighed heavily on my heart.

I’d worked very hard to not fall into the hole of Google while trying to understand Arthur’s complex diagnosis because I only wanted to know what I needed, to have my questions answered by real people and to ensure the answers I got were utterly relevant to Arthur. This meant putting my faith in the cardiologists at Oxford to not only look after Arthur, but to educate and guide my decisions. I wasn’t sure what to do and was made to feel that I could refuse the scan, but I didn’t want to go back to Southampton only to say no to the procedure. Luckily, Dr Jones and Mr Viola had a long conversation and Mr Viola demonstrated to Dr Jones why the scan was, in fact, worthwhile.

While the 3D heart model was produced, we were unexpectedly allowed home. Those four weeks felt like a genuine gift. Once Arthur’s heart model arrived with the team of doctors, long discussions ensued. I always imagined that their Monday morning meetings were bigger versions of those on ‘House’ – the medical drama with the slightly mad doctor and a team rushing to find the answer to a tricky dilemma.

The 3D heart revealed just how complex Arthur’s heart really was and how difficult surgery would be. That small piece of plastic totally changed the plan for the upcoming surgery and the others that would follow. The ‘fix’ we were hoping just one more surgery would deliver was in fact too tricky while he was so small. As a result, a temporary fix was delivered, using a procedure ordinarily intended for a completely different diagnosis. While I desperately wanted it all to be over for Arthur, and me, I knew I needed to believe that this delay would, in the future, be for the best.

Over time, I’ve come to realise that the plastic heart gave us far more options. It gave us the chance of a normal working heart. And of course, the understanding of Arthur’s individual and unique anatomy was imperative before undergoing major surgery.

The temporary fix was the Glenn procedure normally carried out on children who have half a working heart. Although not the operation we had planned for, Mr Viola and his team could tell me exactly what was going to be done, with none of the usual: “It depends on what we find.” As a result, I could question all potential outcomes and recovery processes. I felt fully prepared.

We have since had three more models made of Arthur’s heart. They helped to make complicated decisions easier for those that get to decide. We didn’t get our fix, but what I got was a boy who has survived and now thrives, albeit it with a heart that works very differently to most people’s.

Arthur’s little plastic hearts now sit on display in a kind of heart library while the real one beats away, growing bigger and stronger. I like the idea that others can look at his heart model and learn how to approach cases like his.

The model of Arthur’s heart impacted more than just the surgical route taken. It has impacted my feelings around what happened to Arthur and my relationship with our surgeon, Mr Viola. If I’m honest, I think I would have felt differently going into his very first surgery if I had seen it then. It would have helped me better understand why they did what they did, why certain choices were made, his unique anatomy, and I may have felt less fear. Unfortunately, I didn’t have that option then. More than anything, what the model has given me, as a mother, is a better understanding of the man who held my son’s beating heart in his hands. The one who saved Arthur’s life at just nine days old. Who made a plan in the hope of giving Arthur forever but had to rethink and instead gave us a life he can live to the fullest.

It was when Arthur was struggling to recover from his second open heart surgery that Mr Viola bought me his heart model. He used it to show me what he had already done and explained why he couldn’t do what he wanted to – tilting the plastic heart in such a way that the light revealed holes buried so deeply he simply couldn’t reach them yet. He still hoped at that time to be able to. I was completely in awe of his skill; how he could tackle something so complicated while carrying the unthinkably heavy weight of Arthur’s life and my love for Arthur. What shone through more than anything was his passion and compassion. He talked about how he wasn’t the type of surgeon to take risks, especially for a patient like Arthur, who was too important.

The 3D heart model didn’t take away my fears, but as my baby faced more surgery under Mr Viola’s hands, I felt safe in the knowledge that every decision he made was with Arthur’s best interests at heart.