Unique Operation For ‘Crystal Child’ With Rare Genetic Diseases Performed In Ukraine

Such an operation was made possible thanks to the invention of a rotationally stable intramedullary telescopic retainer with a growing part for the femoral neck.

The production was financed by Vladimir Manukian, a Ukrainian businessman, founder of the Renaissance Medico charity foundation.

At the end of March 2020, Ukrainian orthopedic surgeons performed a unique lower limb reconstruction surgery on a seven-year-old boy, Zhenia, with a rare combination of complex genetic diseases - Escobar syndrome and imperfect osteogenesis (‘crystal people’).

The operation took place in four stages and became possible thanks to the invention of the leading engineer of Skhid-N, Andrii Kovaliov.

Professor Serhii Khmyzov, the head of the Department of Pediatric Orthopedics of the Institute of Spinal and Joint Pathology named after Professor M.I. Sytenko, announced this in his post on Facebook, Ukrainian News Agency reports.

“This combination of genetic syndromes was not previously described in orthopedic literature. Throughout his life, the boy had seven low-energy fractures of the upper limbs and more than 30 of lower limbs. The child does not stand and does not walk. We performed several complex operations to reconstruct the lower limb using unique technology invented by the engineer of the Skhid-N Kharkiv plant, Andrii Kovaliov," Khmyzov said.

He explained that the Fassier-Duval telescopic (‘growing’) rod (Canada, Pega Medical) is the generally accepted global ‘gold’ standard in treating patients with not perfect osteogenesis.

But, this design is not registered in Ukraine, and in addition, it is very expensive.

“In addition, the Fassier-Duval rod is rotationally unstable, which could cause difficulties in the treatment process (additional fixation is needed) and complications (spiral fractures and rotational deformities). In addition, it does not have a femoral neck fixation. Therefore, we had to look for another, more suitable solution. And it was found by engineer Kovaliov. He did the impossible - he created a rotationally stable intramedullary telescopic retainer with a growing part for the femoral neck," the surgeon noted.

The production of the first samples of the new rotary retainer was funded by a Ukrainian businessman.

According to Khmyzov, before applying the new retainer during the operation, it was necessary to settle a number of bureaucratic nuances - to obtain a production permit, ISO certificates.

He added that at some point everything was in jeopardy, but there was support from business and public organizations.

A significant contribution to supporting the production of new systems of rotationally stable telescopic retainers was made by businessman Vladimir Manukian.

“There was a systemic crisis and the domestic certified production facility, which is located in Kharkiv, was in a very difficult situation. He supported the production in difficult times. Vladimir Manukian introduced his technical ideas for creating specialized equipment for deep hole drilling, as well as a robotic laser welding machine for these unique retainers. He helped with the selection, purchase and delivery to the country of non-standard imported tools and special alloys for production. Also a huge job was done by the All-Ukrainian Association of Crystal People public patient organization and its representative Liubov Petrova,” Khmyzov emphasized.

As noted by Vladimir Manukian, the support of domestic scientists and developers in the field of medicine who find ways to solve complex problems where modern high-tech solutions are needed has become one of the priority areas of charity work for him.

“There are a lot of medical scientific developments in Ukraine, which, unfortunately, the state does not finance to the necessary extent. As the founder of the Renaissance Medico charity foundation dealing with the problems of ‘crystal children’, I am very interested in developing Ukrainian technologies and solutions that can help in the treatment of people with such diagnoses. After all, the doctors themselves are convinced that this is a disease, not a verdict. Therefore, businessmen, philanthropists should team up with scientists and doctors to give ‘crystal people’ such a chance," Manukian commented.