“In the intensive care unit, we constantly heard from the doctors: ‘Why are you even here? This child is a vegetable; you don’t need her, she will never breathe on her own, eat, sit, or walk… You already have an older, perfectly healthy daughter—go and live with God. It’s not worth your effort or money. They advised us to give up Bohdana and leave her…’” — recounted Nadiya Motroy, mother of little Bohdana with a disability.
On the Intensive Care Unit
Bohdana was born prematurely with a very low birth weight. Were there any warning signs of early labor?
“No, absolutely none. The pregnancy was progressing normally. Just as the full-scale invasion began, my husband planned to take us—with our older daughter—to safety and then go off to serve in the army himself. But the unexpected birth of our second daughter upended all those plans. When I first saw her—so tiny, weighing just 840 grams—I thought: can babies really be this miniature? She looked like a kitten, because her eyes were closed for the first two weeks. She also seemed a bit alien—despite her small weight, her length was significant. Essentially, she was just delicate bones wrapped in skin.”
Your daughter spent her first weeks in the ICU. Do you remember when you were finally allowed to hold her?
“My husband and I visited Bohdana in intensive care three times a week, but we could only touch her—reach in and stroke her through the incubator. Visits were permitted only between 10 and 11 a.m. If an air-raid alert sounded, the visit would be canceled. If another newborn was brought in for examination, it meant we couldn’t see Bohdana that day. Countless times we arrived, stood outside the ICU for an hour, and then went home empty-handed. Only two months after her birth were we finally allowed to hold her. They swaddled that little bundle in 350 blankets so she wouldn’t get cold. I remember holding that tiny bundle, knowing that inside it was our child.”
Did you ever consider changing hospitals?
“Yes, we repeatedly asked to have our daughter transferred from Kryvyi Rih to Dnipro. But the doctors insisted she was too fragile and no hospital would accept her. When Bohdana began breathing on her own, I raised the issue again—but they came up with a thousand excuses. Finally, when she broke her leg, I traveled to Dnipro myself and managed to have her admitted to the pathology department.”
How did you discover the fracture?
“At each visit I gently massaged and stroked Bohdana. One day I noticed one of her legs was red and swollen—and she cried when I touched it. We called in the department head and showed him the problem, but he replied, ‘Well, you have central nervous system damage—what do you expect? It’s fine, don’t panic.’ That went on for three weeks. I kept voicing concerns but was told I was imagining things. They eventually agreed to transfer her to pathology, but the head of that department saw the leg issue and insisted on an examination. An X-ray revealed a fracture that had already formed a large callus. They applied a splint. On the phone, we were told it was nothing serious—just a small crack. But when we saw the X-ray, we realized it was a displaced fracture. No one knew how it happened—three weeks had passed and the security cameras weren’t working. We insisted on an orthopedic-traumatologist consultation. He concluded that the fracture was caused by epileptic seizures. Thankfully, she was still very small; it healed well and left no significant consequences.”
On Acceptance
Accepting that your child has a disability and moving forward—how difficult was that?
“In the ICU, doctors kept telling us: ‘Why are you even here? This child is a vegetable; she won’t breathe, eat, sit, or walk... You have an older healthy daughter—go and live with God. It’s not worth your effort or money.’ They urged us to abandon Bohdana, citing multiple diagnoses: cerebral palsy, epilepsy, optic nerve atrophy, and a patent foramen ovale. The first year was extremely challenging. We consulted nearly 30 neurologists—anyone we could find. Maybe we hoped someone would say, ‘There’s a magic pill; it’s not so bad; everything will be okay.’ But opinions varied wildly—from ‘she’ll be a vegetable’ to ‘she’ll run.’ With our older daughter, we had seen how she grew and developed—this time, everything was different. Milestones passed and she didn’t reach them. We knew the risks were high. Immediately after discharge from pathology, we began attending various rehabilitation centers. Bohdana was so tiny—just 2 kg. We were constantly reminded of the importance of early intervention—yet she was just a tiny, frightened, painful baby. After many sessions, any unfamiliar voice or person would trigger a meltdown. I realized we needed a different approach. I researched online, connected with other mothers in similar situations, and learned about the Bobath Center in Kyiv. From our first visit, both Bohdana and I felt at home there. The specialists use play-based methods; she never cries during sessions—she plays and is content. If she’s tired or in a bad mood, they accommodate and reschedule.”
How often do you attend rehabilitation?
“Every two to four months, we try to go to rehabilitation—primarily to the Bobath Center in Kyiv, where all the specialists are located. For vision restoration, we travel to the ‘Light of Hope’ center in Ternopil region. In the village of Staryi Skalat, nuns trained in Poland opened a center at their monastery for blind and low-vision children—and they even pick us up from the Ternopil station in their van, which is very convenient since Bohdana uses a wheelchair. Ideally, both physical and vision rehabilitation would be in one place—but no such center exists yet, so we travel across the country.”
How do you travel to other regions when Bohdana is in a wheelchair?
“When we need to go to Kyiv or Ternopil, I book a special rail carriage. But buying tickets can be difficult—they often refuse to sell us seats because she’s small and invent excuses. I know bookings open three weeks in advance, so at exactly 12:01 a.m. I reserve the carriage. In larger cities, we use low-floor minibuses—thankfully, accessible public transport is more common now. Still, travel is hard for her—especially in summer, when she struggles with heat. Winter is easier—not loving to bundle up, but at least it’s not hot.”
On Challenges
Having a child with a disability profoundly changes life. What new challenges have arisen and continue to arise?
“Whenever a new question, need, or problem emerges, you must dive into the details and master the legal framework. On paper, everything seems covered—but in reality, it feels like talking to a wall. You go to different offices, present laws and regulations—and people blink at you: ‘What do you want from us?’ We live in a small town; officials across departments know us—we’re always asking for something. For example, we were the first to request orthotic leg supports—and officials asked, ‘What is that and why do you need it?’ Sometimes things get comical. While hospitalized, my husband visited a neurologist to include front-support walkers in Bohdana’s Individualized Plan (IPR). I called the doctor beforehand to ensure it was listed correctly—‘front-support.’ Later, my husband called laughing: ‘The doctor wanted to write “front-wheel drive” walkers, and I told her, “Let’s go full drive!”’ Funny, but behind the humor lies a constant stream of issues to solve.”
What about receiving qualified medical care after your ICU ordeal?
“Our pediatrician, who has treated Bohdana since birth, recently left the state clinic for a private practice—and we followed her. Previously, under the IPR, we received free diapers and pads. Now, as private patients, we lose that benefit. We submitted requests and spoke with officials—but only got shrugs. They told us: ‘Either sign a declaration with another state doctor—or no more free diapers.’ I explained we would continue seeing our pediatrician. Once, when Bohdana had seizures, we called our pediatric neurologist to come to the hospital—and she refused. How could I declare her as our doctor under those circumstances? Yet I can call her anytime—at night, on weekends—and she answers. When we were taken by ambulance to Kryvyi Rih for seizures, the neurologist didn’t examine her; they reviewed her history and sent us to pediatrics. There, they prescribed IV antibiotics and a ‘triple cocktail’ without blood tests or temperature checks—despite benzodiazepine contraindications for epilepsy. We spent the night; in the morning, they released us—they said they couldn’t detain us but didn’t know how to treat her. Then we went to our pediatrician—she examined Bohdana thoroughly, ran tests, and provided proper treatment. We’ve experienced many such cases.”
As a mother of a child with a disability, you serve as doctor, rehabilitator, and psychologist… Do you find time for yourself? Do you have someone to care for Bohdana when needed?
“My greatest helper is my older daughter, Ivanna. She’s ten and adores her sister. She can seat her in her chair, feed her treats, give her drinks, play, talk, and dance with her—so I can leave Bohdana with her for half an hour or an hour. It’s summer vacation now, so Ivanna spends a lot of time with her sister. During the school year, she does her homework during breaks to have time with Bohdana. Since I don’t work and her father works two jobs, Ivanna’s help is invaluable.”
Bohdana is old enough for kindergarten—how is inclusion working for you?
“We are registered at the kindergarten near our home. Last year, I spoke with the head, asked everything. They opened an inclusive group, and I trained to be a classroom assistant. We’re not attending full-time yet. However, staff from the Inclusive Resource Center (IRC) conduct individual sessions with Bohdana at the kindergarten—it’s more convenient. Sometimes, due to air-raid alerts, the IRC can’t come, and the trip takes time, risking her losing interest. So during the school year, specialists come three times a week to work with her at the kindergarten.”
How does Bohdana react to air-raid alerts and explosion sounds?
“When alerts sound or bombs go off, I try to distract her and remain calm. She understands spoken language, so I always talk to her. The most important thing is to keep yourself composed and stay calm.”
— Kateryna Novitskа
