"Parents imagined a leg where the toes would move." How Ukraine's first child who lost a limb due to the war is undergoing prosthetics treatment
Maryna is the first patient to undergo paediatric prosthetics in Ukraine of a limb lost because of the war. A projectile hit her family’s home in Kherson in the spring of 2022, when the girl was still five-years-old. A Russian missile tore off her leg.
The girl was taken to Okhmatdyt [a multi-profile diagnostic and treatment medical facility in Kyiv – ed.] for rehabilitation in May, but she would just lie down and did not even want to get out of her bed.
A team of medical experts – a psychologist, a rehabilitation therapist, and a prosthetist – started to put Maryna back on her feet. She could not even stand without the severed limb, as her balance was affected.
At the end of the summer, she was given her first training prosthesis, and a few months later, another personalised one was created.
Specialists of the Okhmatdyt clinic: Physical therapist Nazar Borozniuk, psychologist Tetiana Pidkova and prosthetist Oleksandr Stetsenko told Ukrainska Pravda.Zhyttia about the challenges, problems, and achievements of children's prosthetics.
Psychological barrier
After the tragedy in Kherson, Maryna and her mother Nataliia were treated in different hospitals in Kryvyi Rih, Ukraine. The girl's Aunt Liubov took care of her.
"There was a separation between mother and daughter, and the girl became more bonded to her aunt.
It was like a barrier protection because the child could not use the bathroom, move, or dress on her own. All these functions were performed by Liubov. And now Maryna feels safe with her aunt," explained psychologist Tetiana Pidkova.
Later, when the mother and daughter were taken to Okhmatdyt, the girl's psychological state regressed rather than improved. According to specialists, Maryna could "perceive" her mother's emotions, and the woman felt her child was different because of the trauma.
"Maryna has PTSD [Post-traumatic stress disorder – ed.]. This trauma is caused, not by the war, but by the loss of a limb.
We faced the issue of parents' absolute rejection of their child's injury. After all, they saw her as healthy, with two legs, and physically developed," the psychologist said.
Therefore, Maryna's mother hoped that the prosthesis would return the child to the state before the tragedy.
The girl's psychological state was quite complicated. She was not ready to let new people in and limited her communication with the outside world. Therefore, the parents decided to stay in Ukraine and undergo rehabilitation and get their daughter back on her feet in her native country.
"Nataliia has seen examples of prosthetics abroad. For example, Katia and her mother from Kramatorsk, who came under fire at the train station, received more aesthetic prostheses in the United States. However, they both sustained injuries below the knee, and the growth of the 11-year-old girl is not as active as of six-year-old Nataliia’s daughter," Tetiana Pidkova explained.
The child's intensive growth was one of the reasons for staying in Ukraine, because prosthetists in the United States or Seoul suggested replacing the prosthesis every two years.
"It was hard to even explain to the parents that it would be a prosthesis, not a cosmetic one, but a tube. For some reason, they, like Maryna, imagined a leg where the toes would move," physical therapist Nazar Borozniuk said.
Instead, a prosthetic tube was provided. It consisted of second-hand parts, because another child used to walk on it.
Experience of the first prosthesis
Maryna again felt her mother's despair, so she protested and started to throw a tantrum when she saw the training prosthesis.
"We decided to name the prosthesis Kesha, and to teach her to be friends with it," the psychologist said.
A few months before, Maryna and her rehabilitation therapist Nazar had been doing special exercises to strengthen her muscle corset. However, the first time the girl tried it on, she was in tears.
The stump (the part of the limb that remains after amputation) had to be bandaged before the prosthesis was put on. In medicine, this preparatory procedure is called bandaging.
"The first couple of times I knew I was bandaging Maryna's leg wrong. But I didn't know how to do it right. At the university, no one focused our attention on prosthetics, the stumps, or bandages. The war seemed to be so far away, but now it is breathing down everyone's neck.
I have poor English, but that didn't stop me from translating article after article, looking at pictures and learning by practice. Children's prosthetics are difficult because children are constantly growing, and the prosthesis needs to be changed, and constant monitoring is required," the rehabilitation specialist noted.
He recalls that it was then that his colleague Mariia went to Norway for a summit. Nazar had sent her a bunch of questions, and many more of those arose in the process.
"Once upon a time Masha [diminutive of Mariia – ed.] said, "I feel shy to ask." And I responded, "We are at war. Just ask. Don't be shy."
"Then colleagues from France, Italy, and the UK came to teach us, and taught us a lot of new things. I did half of it. In fact, it was good and correct, so they would approve the work," the doctor said with a smile.
He added that all young patients with such military amputations are first taken to oblast hospitals and then transferred to Okhmatdyt. Children undergo rehabilitation and receive psychological assistance in this clinic, and then they are sent abroad for prosthetics.
Prosthetics are free of charge for children affected by the war, both in their home country and abroad.
Challenges and difficulties
One of the reasons for tears during the first attempt to put on the prosthesis was the mere physical discomfort, reinforced by the fear and parental non-acceptance.
For some time, the girl had been expressing her internal protest. She wore the prosthesis only for rehabilitation classes. The staff tried to encourage Maryna to walk with her new "leg" more often so that she would learn to walk using it faster.
"Maryna needs to learn how to control the mechanical knee, because it slips. She needs to learn how to move her leg and bend it, because the muscles atrophy after amputation, and some of them have a different shape due to the injury.
It often happened that the girl's brain sent false signals. For example, she would feel pain in the knee that doesn't exist. We would scratch it, laugh, and it would go away," Nazar said.
He also notes that the little patient is very emotional. During the exercises, Maryna can be involved in a game, laugh, and walk on a prosthesis. But some trifle or change in mood can cause tears, and then the lessons have to be suspended.
Nazar stresses that there are many factors that can cause a patient to miss therapy.
"She is very afraid of air-raid sirens. Or if someone just mentions an explosion somewhere, she instantly has a tantrum. In general, we are supposed to practise three times a day, but we usually do it twice," the doctor said.
He says that it is very important to find an approach to each child, because an orderly tone does not work with them. For example, it took almost the whole team to motivate Maryna to go for a walk.
"We were making up reasons why the girl had to walk long distances, just some fantastic excuses. So, if the whole Okhmatdyt encourages her, and the family is like, ‘Oh, why does she have to walk so far?’ Maryna would hear this and would not come," the physical therapist said.
Personalised prosthesis
A month after Kesha, Maryna received a personalised prosthesis – a permanent and comfortable one. She called it Kesha 2.0.
Prosthetist Oleksandr Stetsenko said that the girl's prosthesis was made of a silicone composition, also called a vacuum liner. It is only gaining momentum in Ukraine, but, unlike its predecessors, it holds the prosthesis better and is more firmly fixed on the stump, as it does not require additional bandaging.
"Instead, it requires ‘pulling’, i.e., pulling the limb into the vacuum attachment. There is a special valve on the prosthesis that pushes out air and holds it in place like a suction cup.
Modern prostheses have a modular structure, like Lego bricks. The foot and lower leg are assembled separately by connecting adapters and a receiving sleeve. Such prostheses are easy to use and upgrade," the expert explained.
Due to the active growth, the girl and her aunt visit the prosthetist every three weeks. He adjusts the prosthesis to the child's needs, because when Maryna grows up even a little bit, her leg becomes shorter compared to a healthy one. The girl leans over to the other side, and this may cause scoliosis.
Oleksandr Stetsenko says that in two or three weeks Maryna's prosthesis will be cosmetically closed. It will look more like a leg. However, in the upper part, where the sleeve is put on the stump, the prosthesis will look wider than a healthy limb.
According to his estimates, the girl’s prosthesis will need to be replaced in about three or four years, particularly the knee joint and the foot. Some components wear out, while others can still serve.
"Marynka [diminutive of Maryna –ed.] has very good potential. I think she will be able to walk freely very soon," he said.
Psychologist Tetiana confirms that the girl has psychologically accepted her prosthesis, as she wears it and walks.
"We can't separate this child from society, so we need to help him or her accept who he or she is and live with the condition.
We show Maryna photos of models walking the podium with prostheses. We explain that they are cool and feel very comfortable. We switch the girl to motivation for the future, as we cannot remove PTSD or grow a new leg for her," psychologist Tetiana said.
She is optimistic that in the spring, Maryna will be walking using her prosthesis without a wheelchair.
Viktoriia Andrieieva, specially for Ukrainska Pravda.Zhyttia
Translation: Artem Yakymyshyn
Editing: Keegan Foxx
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