World Kidney Day: Charlie's story

“Charlie is a typical two-year-old boy. He has a twin brother and likes to do everything that Zach does. He enjoys building with Lego and watching paw patrol,” says his mum, Emma. She shares his story:

“Charlie was diagnosed with dilated cardiomyopathy when he was almost 6 months old. It’s a condition in which the heart becomes enlarged and cannot pump blood effectively. He was treated at Belfast Royal Hospital and doing well until November that year (11 months old) when he started having difficulty breathing. I brought him to our local A&E, where they discovered Charlie’s excessively high blood pressure and he was admitted to Belfast Children’s Hospital Intensive Care Unit (PICU). Tests were carried out and he was diagnosed with a condition known as mid aortic syndrome. This is a very rare condition in which part of the aorta (the heart’s largest blood vessel) that runs through the chest and abdomen becomes narrow, causing lower blood flow in the chest, abdomen and lower limbs. We needed the skills and expertise of medical teams at GOSH to treat and care for Charlie.”

Whilst at GOSH, Charlie was under the care of consultant Dr Jelena Stojanovic. She said:

“Charlie’s arteries, which lead blood to the kidneys, are narrow. This causes extremely high blood pressure, and meant that before treatment, Charlie was on five medications to control it. Uncontrolled blood pressure can lead to consequences of the heart and other organs if not treated. Our aim was to reduce blood pressure to alleviate pressure on his organs and to also preserve kidney function in the longterm.”

In November 2019 and then again in June 2020 Charlie underwent angioplasty, a process of using a balloon to stretch open a narrowed or blocked artery and decrease the blood pressure. Unfortunately, although GOSH is a top center for renal angioplasty, for Charlie, it didn’t give the desired effect.

"The limited blood supply to this kidney meant that it had poor function,” shares Emma. “Scans were able to show that it had reduced in size. The longer it was left the more likely it became that he would lose that kidney and in the future we didn't know what would happen to the other, as it also had reduced function. We knew that you can live with one kidney but we were really worried about losing both, as it would mean he would need dialysis and we would have to wait for a donor transplant.”

GOSH's pioneering medical expertise saved Charlie’s kidneys, in a “mind-blowing” way, according to Emma.

“Charlie had a bilateral auto transplant and an aortic graft. He spent 13 hours in surgery (a long day for us!) and in simple terms, meant that both his kidneys were removed from his body, cooled, fixed and and then put back in again in a different area.”

“This was a huge operation,” shares Jelena. “Not many centers worldwide do this, and we’re certainly one of the very few centers in the world who have the tools and expertise for this. By taking out both of Charlie’s kidneys from the middle of his stomach at the same time, where the vessels were too narrow, and auto transplanting them back into vessels lower down in his body, we were able to save his kidneys and to improve his blood pressure. We also use an artificial aorta to bypass the narrowing of the main aorta, to pump blood from his heart through to his chest, abdomen and into the internal organs.”

To prepare for the operation, the multidisciplinary team of surgeons, nephrologists, cardiologists, anesthetists, IR team and specialists nurses at GOSH created a 3D printed model of Charlie’s kidneys and arteries.

“It was one of the first times a 3D print model had been used for this indication. It helps the surgeons to look at the size of the abdomen, identify the problem and plan a complex operation better. Charlie was a very small recipient and this was a major operation, in the middle of lockdown. But with help of 3D printing we were able to better plan the procedure and visualise his condition, and even explain better to his parents what we were doing," Jelena continues.

“Travelling to GOSH for urgent medical attention in a global pandemic was challenging,” says Emma. “We were lucky to be flown over by air ambulance from Northern Ireland, meaning that we didn’t have to isolate in London once we’d travelled to GOSH, although two weeks prior to surgery we isolated at home. To avoid the spread of coronavirus infection, GOSH has a strict one carer policy in the hospital, meaning I couldn’t see my husband, and he wasn’t able to see Charlie, but we understood the reasoning behind these regulations. I felt safe knowing that necessary precautions were being taken throughout the hospital to lower the risk of coronavirus.”

Emma says: “As always the professionalism of staff at GOSH is second to none and we will forever be indebted to them. We would like to express our sincere thanks to all involved in Charlie’s care especially his consultant Jelena, and the surgeons who operated on him. The knowledge, skill and expertise at GOSH is amazing.”