World Kidney Day- Maksim's Story

Maksim Ivanis is a 3-year-old boy born with Congenital Nephrotic Syndrome, a rare genetic kidney disease. He spent his first few years in hospital in Serbia. During this time, he developed kidney failure, and it became apparent Maksim would need a kidney transplant and both of his kidney removed. “It was the only solution I was given... no medication or anything else. The solution was not perfect, and it was risky, but it was the only way” said Milica, Maksim’s mum.

Milica went on to explain “In Serbia, there is one hospital in the main town that does Kidney transplants and the team from Great Ormond Street Hospital (before COVID) visited the hospital in Serbia and carried out kidney transplants here. They told us, from birth, that he would need a kidney transplant. But his father and I are not the same (blood) group as him, it was my mom and brother-in-law who were the same blood type.”

Maksim’s grandmother started the process to donate her kidney to Maksim, however, after some tests, it was deemed this would not be a viable option. It seemed the Ivanis family had run out of possibilities.

However, Dr Jelena Stojanovic, a Consultant Paediatric Nephrologist who leads the ABO Incompatible Kidney Transplant programme at GOSH has close Serbian ties. Maksim’s local paediatrician contacted Dr. Stojanovic to see if she would be able to help explore this as an option (as it not yet currently available in Serbia).

An ABO incompatible kidney transplant is a high immunological risk transplant where the recipient of the kidney can successfully receive a kidney from a donor who does not share the blood group type. “It carries a higher risk of rejection of the transplanted organ, so careful preparation before the transplant and close monitoring after the transplant is needed. This type of transplant can only be delivered in highly specialised centres such as GOSH. Currently, GOSH carries out the highest number of ABO-incompatible transplants in Europe.” Dr Stojanovic explains.

This meant that although Maksim’s father wasn’t a blood match, he could now help his three-year-old son by donating his kidney to save Maksim’s life. Maksim is the first patient in Serbia to have an ABO-incompatible transplant.

“As Maksim was small, the operation involved a midline incision and implantation of the kidney from his father onto the main vessels of his abdomen. In addition, there were multiple vessels to join. This made the operation more difficult, but the operation went very well, and it was a success” explained Consultant Surgeon Mr. Nicos Kasseris

“The surgery was very complicated, but I am very happy that Dr Jelena Stojanovic and Mr. Nikos Kasseris and the whole team involved succeeded in doing it very well” says Milica.

After the surgery, Maksim was in the hospital for a few days where a close eye was kept on him.  The team had to regularly check his antibody levels and kidney function. But Maksim’s results were good, and afterwards, he was seen by the team in the clinic frequently to ensure his kidney maintained good function.

Three months after the surgery, Maksim is on medication to stabilise his kidney. But he is active again and enjoys playing in the park and will be starting Nursery soon. “When people look at him, no one would expect that he’s had a kidney transplant so young, no one has a clue that he is sick. He looks very healthy and happy.” Milica revealed.

“Maksim will now go for regular check-ups back in Serbia and his care will be discussed with the team at GOSH after each clinic visit or if there are any concerns” explains Dr. Stojanovic.

It is thought, his new kidney should last him over 20 years, “he (Maksim) will need a further transplant after that. His quality of life has increased as he is not on dialysis anymore and the transplant will allow him to grow more normally and live longer” Mr Kasseris added.

This is a great hospital with great resources, you feel very comfortable here, everything you need, you will get. If you were to ask Maksim, he was extremely happy with the Play team, I was very happy with all staff because they were very sensitive but professional …. Any parent would be lucky to bring their child here

Maksim's Mum