From Coma to Recovery:
Pertsov Family Rehabilitation in the Time of War
Iryna and Oleksandr Pertsov from Yahotyn near Kyiv had been dreaming for years about a second child. The family was happy when in 2019 a son was born.
But at the age of a year and eight months, the boy got a disability after an incorrectly induced anesthesia at a hospital. Since then, the life of the family has never been the same: rehabilitation of their son became their everyday life. Iryna has mastered a new profession, a special education teacher. Now, in addition to returning her son to life, she also helps developing inclusive education in the lyceum where she used to study herself.
Beginning of the full-scale war brought new challenges for the family: application for disability status was delayed, and access to rehabilitation lost. The aid Iryna Pertsova received for her son and her work was well-timed. In 2023, Alliance for Public Health together with Payoneer provided support to children with disability and institutions working with such children. Information of the people that needed help the most was available thanks to Alliance’s cooperation with the Ministry of Social Policy: child protection services provided information about families and institutions in need of support.
Life before and after coma
‘It was a desired and deliberate motherhood’, says Iryna Pertsova describing her second pregnancy.
Sashko was born a healthy child, but when he was aged a year and eight months, he was hospitalized because of intussusception — a kind of intestinal obstruction requiring a surgery.
‘Sashko was an active boy, he started walking before he was one year old’, tells Iryna. ‘After the surgery he felt well, he walked around. 12 hours later, anesthesia was required. When they injected the medication, the child dropped his head and suddenly passed out.’
The boy was in coma for several days. The mother could not recognize her son.
‘Sashko did not see anything; he could not speak or walk. His behavior changed, it was as if he could not understand what was happening’, Iryna recalls.
This episode divided the life of the Pertsovs in two. Now their every day will be dedicated to the recovery of their son.
Rehabilitation every day
Iryna buys a comfortable stroller to bring her son to a park or playground: Sashko cannot move. When he starts sitting, Iryna starts placing him in the sandbox. The boy touches the sand and the toys his mom gives him. He looks around because he cannot see anything.
Rehabilitation of their son becomes the daily routine for the Pertsovs. His diagnosis is spastic tetraplegia, impaired coordination of all the limbs. The boys’ body is disbalanced: one side of his body is hypertoned, i.e. it is always tense, while the other is hypotoned, with twisted limbs. Sashko wears orthoses on his arms and legs. Iryna removes them every day for some exercise with a fitball.
‘The progress was slow, but we had it’, recalls Iryna. ‘The main goal was to put him back on his feet. For a long time, he could not walk, he kept on falling. But he was learning to walk by holding my hand.’
Sashko still struggles walking. He keeps stumbling and falling, yet he walks. By summer 2021, his sight partly returned. His parents took him to the sea twice.
‘We were listening to the waves and chasing seagulls’, tells Iryna. ‘I noticed how walking on the sand was making his muscles stronger. I brought him to water and saw his joy — tactual sensations are very important. After the visit to the sea, his walking improved significantly.’
Processing of the application for disability takes long: bureaucracy, war, doctors’ unwillingness to recognize their error. Eventually, his disability status is confirmed, but state-funded rehabilitation is yet unavailable: a lot of institutions are closed because of the Russian intervention. The family has to bear the financial burden of special care unassisted.
The war adds new trouble. Yahotyn is less than 30 km away from the nearest frontline in Kyiv oblast. When Iryna hears explosions, she has the same thought that every Ukrainian mother probably had: should they move elsewhere? And then this clear idea: no, they will stay at home, they want to stay despite all risks.
‘It was when our home and usual life were threatened that I understood that I did not want to go anywhere’, says Iryna. ‘I want to live in Ukraine and create a safe space for my son here.’
A world in a tablet. Iryna’s new profession
In early April 2022, Russian forces were defeated and withdrew from the Kyiv region. Soon afterwards, Sashko aged 3.5 went to a kindergarten. He attends an inclusive group and sees a speech therapist and a psychologist.
Now Iryna gets a new goal. She now has several years of experience of raising a child with disability. She notices there are many families like hers around. Iryna wants to become a special education teacher and work with other kids.
‘I spent six months preparing to entry exams in the night. I passed!’ Iryna started her extra-mural studies at Poltava National Pedagogical University to become a speech therapist. ‘I am graduating at the end of this year, and I am doing my degree paper.’
Iryna starts working at Yahotyn Lyceum no. 3 she and her mother and sister have graduated from. She works with children with disabilities as an assistant teacher. It is not considered a teaching service, and she gets minimum wage, but she is happy about her work.
‘I take care of six-graders, and I feel that working with children is my vocation’, says Iryna. ‘I am the only person at the school with inclusive education, and I believe that my task is to socialize the children with disability, listen to their needs and provide all kinds of support. If the child is tired or needs motivation, I suggest going to a resource room or play on a tablet, whatever they choose. The experience I have had with my child helps me to understand other kids.’
When Iryna started working, the lyceum lacked tablets. The only one that was available was old and slow and was of no interest for the kids. But newer tablets could be useful for teaching the children. Iryna approached Alliance for Public Health and received nine tablets for assistant teacher so that they could work with children with disability.
Yahotyn lyceum is one of 18 institutions working with children with disability that have received aid from Alliance for Public Health supported by Payoneer. This aid included also sport equipment, furniture for children, mobile ramps, wheelchairs, lung ventilator and other equipment for the children’s department in the hospital, equipment for physical and sensory rehabilitation, etc. Altogether, it is the equipment for 800 children, which will be helpful for their health, systemic development and education.
‘We use tablets to improve mental capacity of our pupils’, says Iryna. ‘Devices help the children to learn through games: they learn figures, new words, orienting in space, anything. We select special videos to help them to develop their thinking and logic, train memory, and expand the vocabulary.’
Iryna is confident that these tablets are a kind of socialization for children with disability:
‘In the virtual world, they learn a lot of new, something they cannot see firsthand. This way they learn about new realities and expand their outlook. Many things are difficult to explain without showing them on the screen.’
Sashko gets ready to school
While we are talking, Sashko is watching a cartoon on his tablet. He is quiet, absorbed in the story. For their own needs, Iryna also received a tablet, the same as those provided to schoolchildren. She was also given a special bed with mattress and a sports kit for rehabilitation.
‘I keep track of the information my son consumes and the new things he learns from the Internet’, says Iryna. ‘Sashko now shows more emotions, he has learnt a lot of new words he would hardly have heard elsewhere. He uses the tablet to simultaneously learn and relax. He discovers new worlds and new heroes.’
Boy’s bed has a special bamboo memory foam mattress: it adapts to the body for comfortable sleep.
The sports corner with devices for physical exercises will let Sashko doing exercises at home. The parents are finishing refurbishing his room and will soon be installing the equipment: wall bars, ropes, various sport devices, Evminov board (a pine board used to for treatment and prevention of spine disorders).
Three years have passed since Sashko emerged from coma and started his development from scratch. The family feels there has been significant progress, though there is still a lot of work to do. The boy happily rides his run bike until he gets tired. While it is not easy for him, he communicates with people and walks. His eyesight has improved, but is not fully recovered.
His elder brother is happy about helping the young one, he brings him to rehabilitation courses: the swimming pool, kinesiotherapy. Sashko cannot sit in the car seat as a regular child — at least during the long travel, there should always be someone near him.
‘They love each other so much’, Iryna’s voice lightens up. ‘Sashko always asks: “Where is my Zhenia?” He runs to him holding his hands out. And they always have something to talk about, even though Sashko does not speak well yet.
The next goal of the family is to send Sashko to school and make him learn on par with other children. They are making small steps in that direction: when children at the kindergarten were assigned verses to learn for a matinee, Iryna asked them to give her son a few lines as well. His parents were glowing with happiness during his performance. All this time, they have been seeking justice with regard to the episode in the hospital that led them to the situation when they struggle daily trying to return their son to a normal life; they monitor the criminal case.
But Iryna also has a work-related dream: she wants to describe her experience of rehabilitation of her son through a proprietary methodology: things that worked for her could help others too.
Iryna Pertsova says that she wants to share some of her confidence with other parents in similar situations to help them believe in themselves.
Репортаж Ярослави Тимощук
фотографії з приватного архіву Ірини Перцової