Everyday life of families with incurable children—a photo-story by Alina Smutko
Thousands of Ukrainian children have incurable diseases and need lifelong palliative care. Behing the formal wording “special needs,” there are pain, seizures, and tears of kids. Two years ago, in the Kyiv region alone, more than 2,000 children needed palliative care, almost half of them—inpatient care, and even more—mobile palliative care. Yet, the region does not have mobile teams, and none of these children were treated in a hospital last year. The only two institutions that provide palliative care to children do not have a license to use narcotics, so they cannot provide proper analgesia.
Meanwhile, the state keeps “updating” the information on the number of such patients, and “studying” the need for appropriate support. Photographer Alina Smutko and the LaVita Palliative Care Foundation talked to us about five families in the Kyiv region who take care of gravely ill children on their own.
“For me, this project is a love story. Maternal, paternal, in general, about love in the family. When we see people who have children with incurable diseases, we usually feel sorry for them and sympathize with them. Old ladies sitting on benches by the doorsteps would shake their heads saying: ‘God forbid.’ Yet, when you are next to these families, the feeling of trained pity dissipates, because you see the purest form of caring for a loved one. Up close, it looks as if nature itself gave them the ability to take care of a child who is incurably ill. Often you even forget that the kid has a pathology, although most children in the project can do almost nothing unassisted or on their own.
When planning the photoshoot, we wanted to talk about the violation of the rights of such families, but reality has made adjustments—now it is a story of how the heroes presented in the photo-series are trying to survive the COVID-19 pandemic. Although, in the end, we managed to capture many everyday aspects familiar to the parents of a seriously ill child.
While shooting, I lost my own rose-tinted glasses, taking a look at a reality previously unfamiliar to me and trying to understand the needs of others. Our society lacks an understanding of the meaning of palliative care. One has to explain the concept literally in layman’s terms: this boy is ill, he has such a diagnosis, he is in pain, this drug helps. And here is the boy’s mother, and sometimes she needs professional care for the child, and that is impossible to get in our country. One of the participants in the project took care of a seriously ill child while being treated for cancer herself—I cannot imagine how much strength it takes.
Each mother in these photos for me is a heroine with a superpower of her own. They are modest but dedicated. They live life in their own way, overcoming the trials that befell them”.
Maryna, 38, and her 11-year-old son Oleh are in the yard by their own house. They live with their grandmother in the town of Tarashcha, Kyiv region. Oleh has congenital cerebral palsy. The boy does not talk, does not walk and cannot swallow. He spends most of the day at home in bed, and when the weather is good, his mother takes him outside while doing housework nearby. Their favorite place for a walk is the lawn by the pond behind their house, where the family grazes their goats.Yevhenia, 37, spends time with children: together with her 3-year-old son Ostap, she waters vegetables in a greenhouse and bathes her middle son, 8-year-old Nazar. Yevhenia, her husband Taras and their three sons live in the village of Demydiv, Kyiv region.Nazar is gravely ill: he is deaf, almost blind, and cannot eat on his own due to a blood pathology that has caused brain damage. The younger Ostap had similar symptoms after birth, but a timely diagnosis and proper treatment saved his health.Yulia, 38, and her 15-year-old son Dmytro are watching her younger daughter, Tetiana, feed a newborn piglet at home in the village of Ivanivka, Boryspil district. The girl is used to helping her parents with the housework and caring for her sick brother.Dmytro has a congenital brain defect—microcephaly.Iryna, 33 (left) and Valeria, 29 (right), getting their children— five-year-old Zlata and Dima—ready for a walk in the capital’s Expocenter of Ukraine. The women met several years ago while their children underwent treatment at the Boiarka Children’s Hospital near Kyiv.The families live in different parts of the region, but still keep in touch. This time, they met in Kyiv, where Valeria brought Dima for rehabilitation. Due to quarantine measures, the classes that were scheduled for the boy were postponed, so his compulsory systemic rehabilitation was disrupted.
Yulia and Dima spend time together on his “mother’s day off”. The woman works in the emergency room and as an ambulance paramedic in Boryspil district.
Despite Dima’s high risk of getting severe coronavirus, the entire time of the pandemic Yulia’s team goes on calls to potential patients.
Nazar and his mother in the yard by the house. Yevhenia often takes her son for a walk in her arms, and they rest together on a swing. Three years ago, to support other parents of children with disabilities, the woman founded the ROD NGO and planned to open her own rehabilitation center.When the pandemic started, Yevhenia quit her main job, but kept volunteering. The woman has two university degrees, worked in a medical publication, and as a speech therapist.Maryna feeds Oleh buckwheat soup. Ever since he was little, the boy has been fed through a tube in the nose. The family had to learn to take care of the tube on their own and change it at least once every three days. The mother and grandmother cook meals “the same as for everyone else” and then blend the dish so that it can be injected with a syringe. Sometimes Marina pampers the boy, giving him a taste of food from a spoon.Oleh is 11 years old but he weighs very little—mere 15 kilos. For the boy to gain the necessary weight, a special dry food must be added to his diet, but without the help of doctors and volunteers, the family cannot afford it.Yevhenia makes dinner for Nazar, to which she adds painkillers. Usually, the family barely sleeps at night: his father, Taras, works on the computer, and his mother is on duty by the sick boy’s side. Nazar often has seizures while sleeping, that is why it is important for someone to be near him at all times. Nazar is fed through a gastrostoma—a PEG tube in the abdomen. The boy received the gastrostoma when he was 6. Before that, Yevhenia tried to feed her son in various ways, which often ended in prolonged vomiting. Now the feeding process is much more convenient, and Yevheniia regrets that she did not decide on the procedure sooner.At first, every time Nazar would accidentally pull the PEG tube out, his parents rushed him to the hospital, because the hole tends to close very quickly. Now they solve this problem on their own. In total, Nazar’s food costs about UAH 5,000 a month, and another UAH 2,000 is spent on medicine. Monthly government support for the family is UAH 3,364.While Zlata is asleep, Iryna carries her daughter to the car after their walk. They are going home to Boiarka. Their house is located across the street from one of the two inpatient facilities that provide palliative care to children in the Kyiv region—the Specialized Children’s Home.A few years ago, Zlata had a treatment course there, but they refused to take the girl for a day stay. They justified their decision saying that the institution is intended only for orphans. So when in 2019 Ira underwent a long and complex treatment for cancer, Zlata accompanied her mother on medical examinations and chemotherapy.Valeria and Iryna and their children watch the birds by the pond in the park of the Expocenter of Ukraine. Dima and Zlata have had cerebral palsy since birth.The boy was born in Boiarka, where in 2015, in the midst of the hostilities in eastern Ukraine, Valeria escaped from her native Bakhmutivka, Luhansk region, while pregnant with her son. Recently, the family managed to buy an old house in the village of Karapyshi in Kyiv region, where they moved with Valeria’s parents.Maryna and Oleh return home after a walk. Most often Maryna carries her son in her arms, occasionally she uses a wheelchair—Oleh does not like riding in it. The boy is often refused rehabilitation because doctors are apprehensive of his feeding tube.Of the available treatments for Oleh there’s only massage therapy in Bila Tserkva, which is 43 km away from their town. Maryna takes her son to the sessions on her own. To do this, she bought an old VAZ and learned to drive. According to the woman, the private physician is the only one who got on the right side of the boy. The government does not pay for such services.
Sister Tanya keeps an eye on Dima while walking in the yard.
While the girl is playing with the phone, the parents work in the garden.
It is 8 p.m.: the couple gets Nazar ready for sleep.It is 5 a.m.: Yevhenia has her morning coffee after the “night shift”—keeping watch by Nazar’s bed.
[This publication was created with support of the Royal Norwegian Embassy in Ukraine. The views and opinions expressed in this publication are those of the authors and do not necessarily reflect the official position of the Norwegian government].
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