"Oh, Vanya!"
The story of a mother of many children from a village in Saratov, who is raising a seriously ill child and fighting the state for every jar of medicinal formula
2024 has been declared the Year of the Family in Russia. Officials from high-ranking podiums urge Russian women to give birth almost daily, and the Ministry of Health is going to check on fertility. The concerns and aspirations are understandable. According to Rosstat, the number of children born in 2023 turned out to be minimal Since 1999, the authorities are constantly announcing new measures to support families, but not everyone is able to take advantage of them, and not always. And if a family has a child who needs special care, assistance can be a real struggle. We'll use the example of a family from a small village near Saratov to explore the reality of government support for large families.
The long-awaited Vanyushka
The village of Podlesnoye in the Marksovsky District of the Saratov Region was once settled by German colonists. Now, nothing reminds us of the former Unterwalden. It's a typical Russian backwater: rows of private houses, potholed streets, and trees blooming in the yards. Nearly four thousand people live here. The village is often mentioned in local news reports due to chronic problems with water supply, lack of heat, and leaky sewage.
Victoria Blokhina moved to Podlesnoye from Bishkek in 2010, when she was thirty. She brought her four children with her. At the time of the move, the eldest was 13, the youngest was five, and the middle son and daughter were eight and seven, respectively. Her ex-husband went to prison in Kyrgyzstan almost immediately after the divorce. And Vika, like the German colonists once did, went to Russia in hopes of a better life.
In Podlesnoye, she met Igor Blokhin. He instantly connected with children, and she was captivated. She decided she couldn't let such a guy slip away. Soon, the young couple started a family.
Their long-awaited child, Vanya, was born in October 2014.
"We couldn't conceive for a year," Victoria admits. "It was a surprise to me, because I hadn't had such problems with my other children. Then, in Moscow, where my whole family went to work, I developed health problems. They suspected a brain tumor and sent me for tests."
The examination refuted the diagnosis but revealed a pregnancy. Six months after the long-awaited news, the Blokhins moved the entire family from Moscow back to Podlesnoye. They rented an apartment. Igor found work as a welder at the local heating grid. Vika was expecting her fifth child.
Ivan was born on time. On the morning of October 5th, Victoria's water broke. She was taken by ambulance to the Marks Central District Hospital. Vika refused transport to Saratov: the family doesn't have a car, and Marks is only 30 kilometers from Podlesny; there's a bus service, making it easier for her husband to get there and deliver food. After all, this was her fifth birth. What could possibly go wrong?
"All my births followed the same scenario: my water broke in the morning, meaning the baby would arrive that evening," Vika says. "But in Marx, they gave me an inducer, and almost immediately I started pushing. Vanya was born completely blue, wrapped in the umbilical cord. He didn't cry."
For 24 hours, the mother tried to convince the doctors that her baby was "crying somehow wrong," but they, according to her, attributed her complaints to nervous exhaustion. Only on the second day was the baby, with suspected oxygen deprivation, sent to the Saratov Perinatal Center's neonatal intensive care unit.
For ten days in intensive care, the boy hovered between life and death, breathing on a machine. His parents weren't allowed to see him. Only a priest was allowed in—Vika was concerned that if the child were to die, he would be baptized. On the tenth day, the boy began breathing on his own, but by then, his neurological problems had become fully evident.
"Vanya was hunched over, as if he was trying to sit up," Vika explains. "He was pulling his head up and his legs toward himself. Those were convulsions."
Vanya was discharged from the hospital with a diagnosis of epilepsy (West syndrome), and this diagnosis was just the beginning; others followed, a whole raft of them. For the parents, the long journey of accepting their child's illness and finding ways to develop and rehabilitate him began. And it was not an easy one.
I have maternity capital, but I can't spend it.
At the same time, the Blokhins were trying to solve the housing issue - they didn’t want to be cramped, six of them, in a rented two-room apartment.
"We tried, of course, [even before Ivan was born] to get on the waiting list for an apartment as a family with many children," Victoria explains. "But each time, the Podlesnovsky administration refused—the village council doesn't have its own housing, so there's nothing to offer."
The regional law, which gave large families with four or more children the opportunity to improve their housing conditions, was passed back in 2005. But, as Wrote A year ago, Irina Aleshina, head of the regional public organization "Committee for Large Families," wrote on social media that only 65 such families were provided with housing in the Saratov Region in the seven years from 2012 to 2019. As of April 1, 2024, 94 families are on the housing waiting list, and another 57 are awaiting social benefits for home construction or purchase.
According to Aleshina, the problem was that apartments of the required size weren't always available on the market. The "Committee" began lobbying regional and federal authorities for monetary compensation instead of an apartment, but by that time, two of Victoria's five children had reached adulthood, and she lost her right to better housing conditions.
The Blokhins bought the house on Stroiteley Street, where they currently live, a year after Ivan's birth using maternity capital. They spent the entire amount, and had to take out a loan for an additional 90 rubles. They were also entitled to regional maternity capital—100 rubles—but it can only be used after the child's third birthday.
Vanya is now nine, and the family still hasn't used their regional maternity capital—they have nothing to spend it on. They could have used it to increase their living space, but they needed to add 11 square meters, and the Blokhins' renovations to their house only allowed them to add seven. To repair the leaky roof with maternity capital funds, they would have had to hire a construction company with government contracting rights, meaning almost the entire amount (60-70 rubles) would have gone toward paperwork alone. So they abandoned that option, fixing it themselves, spending almost 400 rubles (the loan is 14 rubles per month, and they have to pay it off for another year). They considered using the money for education—paying for driving school for their husband and older sons to become drivers—but it turned out that wasn't an option.
"When we registered our small three-room house, no one told us that its square footage was much smaller than our family's needs, and that we still had the right to improve our housing conditions," says Victoria. "We had the right to rejoin the waiting list to at least get a room in a dormitory. But now the children are grown, and we've lost our right to housing."
Healthcare as a disappointment
In addition to everyday problems, there was endless anxiety about her youngest son, who, despite regularly taking prescribed medication, continued to suffer from seizures. Vanya's disability was first granted for a year, then for three. His individual rehabilitation program (IPRA) didn't include wheelchairs, special chairs, or even braces—despite the fact that he also had cerebral palsy, a diagnosis of epilepsy.
"We were included in the IPRA after Vanya was admitted for examination to a Moscow clinic," Victoria recalls. "The Marx Society for the Disabled helped us get to Moscow. Only after the discharge papers included recommendations from Moscow doctors did we receive a wheelchair, winter and summer shoes, and braces for his arms and legs."
Despite the fact that the shoes and braces were custom-made in neighboring Engels, Vanya's winter boots never fit. The braces were issued in the required quantity, but for some reason they were all for the right foot only.
The boy's seizures persisted, despite Vika following doctors' recommendations and administering anticonvulsants, according to her. Doctors tried various medications, changing names and increasing dosages. But the seizures persisted. After prescribing yet another drug (super-expensive and unregistered in Russia), the number of seizures increased exponentially. According to Victoria, the doctors couldn't explain the cause of this reaction. At her own peril, she tried to discontinue the anticonvulsants altogether.
"At that moment, I was incredibly afraid of losing my child," Victoria recalls. "But one of the neurologists we visited as if it were work told me, back when Vanya was still a baby: if we couldn't get rid of the seizures, he'd live five years at most. He was almost four then. He couldn't see, couldn't hear, wasn't responsive, and hung in my arms like a rag. I knew this was my last chance. I wanted to know I'd done everything I could for my child."
Six months later, the seizures stopped, although the devices still recorded epileptic activity. The doctors also offered no explanation for this effect. However, in their medical records, they noted the discontinuation of medications, but in their prescriptions, they continued to recommend their use.
Victoria began reading a lot, watching videos on YouTube, and trying alternative rehabilitation methods with her child, including those whose effectiveness hadn't been proven. She bought various massagers, used flannel headbands as recommended by an osteopath, and did gymnastics. After the cramps subsided, these methods became accessible to Ivan.
"We went to the rehabilitation center in Marx several times," Vika says. "But it's not very convenient. And it's expensive: for a ten-day course, the travel to and from the city alone cost us 8-10 rubles."
Podlesny is certainly not accessible. Step outside the gate and you'll find broken asphalt, potholed roads, and muddy shoulders on rainy days. In winter, everything is covered in snow. Dragging Vanya in a wheelchair to the bus stop requires a great deal of strength, which Victoria doesn't exactly have in abundance. A ride to Marks costs 80 rubles one way. In Marks, the route from the bus station to the hospital is little different from the one in Podlesny. Calling a taxi is, of course, easier and more convenient, but then you'll have to pay 500 rubles one way. When Vanya goes to the regional children's hospital in Saratov for a routine examination, the taxi fare increases fivefold, to two and a half thousand rubles one way.
Vika recently secured the inclusion of ambulance escorts during scheduled hospitalizations in Vanya's rehabilitation program. Now, at least one trip is free.
"In theory, an ambulance should take us home after we're discharged, but in reality, it's difficult to organize," Vanya's mother explains. "The regional hospital is supposed to notify the district hospital 24 hours in advance, but that doesn't happen. You're simply discharged, and you call a taxi, pay another 2,500 rubles, and drive to Podlesnoye yourself."
Probe, diet and care
In February of this year, following a complaint from doctors about the mother, representatives of the guardianship and trusteeship service came to the Blokhins' home.
"Vanya has been having digestive issues for the last year and a half," Victoria explains. "He's constantly constipated, and since December 2022, vomiting has also been added. He's already lagging behind in growth and weight, and this has exacerbated his iron deficiency."
Following the advice of a mother of a similar child, she tried eliminating whole milk products from her son's diet and giving him enzymes. The pediatrician in Podlesnoye responded to Vika's suggested approach with, "Well, give it a try." The problem wasn't resolved. Esomeprazole, prescribed during another hospitalization, also didn't help. But then, at the hospital, to correct his weight loss, they finally recommended a special therapeutic formula, Peptamen Junior. They also recommended inserting a nasogastric feeding tube.
The mother refused to have the tube installed.
"When Vanya was transferred from intensive care to the regional hospital in his first month of life, I was told he had a disrupted sucking-swallowing reflex and would always be fed through a tube, and then through a gastrostomy tube," Victoria explains. "But I tried bottle feeding him. Little by little, drop by drop. See for yourself—he eats. He sucks and swallows beautifully."
Ivan truly greedily latches onto a bottle of diluted formula and sucks vigorously. Despite the diagnosis of "bulbar syndrome," which appears and disappears in his medical records, the boy does not drool and finishes food in minutes. With bulbar syndrome, swallowing is impaired. Patients cannot even swallow saliva. When it accumulates in the mouth, it typically drips out the corners.
During his last hospitalization, in January of this year, Ivan was again strongly recommended to be fed through a tube. His mother again refused.
"We don't have any issues with getting food into the stomach, only with digestion," says Vika. "When we were hospitalized, I complained about my child's persistent vomiting, which would occur an hour and a half to two hours after feeding. How can a feeding tube solve a digestion problem? And instead of trying to figure out what was causing the vomiting, they removed Vanya's adenoids!"
However, the discharge papers the mother received didn't indicate that the boy had been admitted to the hospital complaining of vomiting. Vika called the hospital to find out why. Three days later, they sent her a new discharge papers. At the same time, the same document was sent to the pediatrician in Podlesny. The pediatrician then notified the child protection authorities, who brought Blokhin to inspect the case.
"The child was recommended anticonvulsant therapy, but the mother categorically refuses it. The child was recommended to have a feeding tube inserted, but the mother categorically refuses it. The child was prescribed iron supplements, but the mother categorically refuses them," Victoria lists the items listed in the discharge summary. These were the items that attracted the attention of the guardianship authorities.
Moreover, the interviewee says, the doctors don't write that she asked not to give iron orally—it's useless and unsafe if she's vomiting—but rather requested injections or intravenous administration, and the hematologist Vanya was referred to for consultation agreed with her mother.
“And one more thing,” Vika concludes the list, “‘The child has been recommended for palliative care, but the mother refuses it!’”
Palliative care is not a death sentence, but…
"When people ask me why I'm refusing palliative care, I answer: I'm afraid," Vika explains. "Even now, they don't hesitate to tell me my child has no future. Even now, I have to fight for every additional test. After all, no one told us Vanya has the right to go to school. Yes, he doesn't study in the same way as healthy children. But sessions with a speech therapist are yielding results. And if I agree to palliative care, I'm afraid they'll simply write off my child's future."
Translated from Latin, "palliative" means "temporarily alleviating, but not curative." It is assigned to patients who have no hope of recovery. Typically, these are people with severe, progressive diseases in the terminal stage or with a limited life prognosis. The goal of palliative care is to improve patients' quality of life by alleviating pain and other severe symptoms of the disease. Assigning palliative care status to a seriously ill child allows the family to receive free medical supplies and a visiting nursing team consisting of a pediatrician and anesthesiologist-resuscitator. For example, patients with spinal muscular atrophy are forced to receive palliative care status simply to qualify for essential respiratory equipment from the state, such as a non-invasive ventilator or cough suppressant.
By law, a child should not have any cross. Being recognized as needing palliative care does not deprive the patient of the right to receive other types of care, including emergency and high-tech services. They can be examined not only in the region but also in federal centers. The only thing a patient with palliative care status cannot receive is spa treatment and additional rehabilitation. For example, if Vanya's mother agrees to be assigned the status, the school's special education teacher will no longer visit him.
But that's how the situation appears on paper. Victoria Blokhina doesn't base her fears on anything out of thin air, but on the stories of other families. For example, the mother of Yaroslav Romanov from Engels (whose condition is palliative) repeatedly heard doctors call her child a vegetable. However, once his condition was stabilized, Yaroslav began to thrive. Then all the results reset A sore throat caused by a hospital-acquired bacterium called Pseudomonas aeruginosa. The child was admitted to intensive care, and treatment was only started after persistent requests, pleas, and threats from his grandmother. Deputy Minister of Health for the region Denis Graifer commented on the situation to the Saratov newspaper Svobodny: "The child there is a palliative care patient. Unfortunately, palliative care patients don't survive. It's sad and painful, and I wouldn't wish it on anyone. But these children die."
As of April of last year, 297 children with palliative care were registered in the Saratov Region. Investments have been made in developing the region's palliative care system over the past few years. A children's palliative care unit has opened (albeit inconveniently located at Children's Hospital No. 7, on the outskirts of the city). A 24-hour palliative care unit with 15 beds has opened in Engels. A mobile palliative care service has been established, with two teams operating in Saratov, serving patients from the regional capital, and one in Engels, covering four districts of the region.
However, funding for the palliative care sector declined sharply in 2022–2023: In 2021, 94 million rubles were allocated for its development, but in 2022, only 5,6 million rubles were allocated. In 2022, more than 144,6 medical devices were delivered to regional medical organizations as part of the palliative care development program, compared to 2,3 devices in 2023.
There are other difficulties.
"For some reason, our specialists believe that such [palliative] children should only receive treatment in our region," says Anastasia Arbekova, head of the "Give Good. Engels" volunteer movement. "At the same time, unfortunately, not all of them are trained to work with seriously ill children. Doctors will try to do something based on their knowledge and experience, they will experiment, but they are not prepared to refer a seriously ill patient to a federal center. They will never suggest or refer the child, even if the child clearly needs a more in-depth examination."
The volunteer notes that healthcare officials are particularly guilty of this, as they are unwilling to distribute funds from the regional compulsory medical insurance fund to other regions. Anastasia, the mother of a girl with palliative care, once fought to have her sent to Moscow for examination. Her daughter's status has still not been removed, but she is thriving, and her mother is actively involved in her rehabilitation.
"Palliative care status gives patients advantages in terms of access to [technical equipment and consumables]," Arbekova explains. "This is especially true if the child has a gastro- or tracheostomy. Or if they require medical treatment—for example, an aspirator, an oxygen concentrator, a portable ventilator, or a special medical bed. In general, families with children with palliative care have many benefits and opportunities, but securing them is challenging. Families are often denied consumables or certain diets, citing a lack of funds."
Nutrition is a particularly serious problem for Saratov parents. complain There's a shortage, despite the Ministry of Health's upbeat report that all formula for children prescribed therapeutic nutrition for life-saving reasons has been purchased. Meanwhile, nutrition is the foundation of development for children with profound disabilities who require palliative care. They often depend on a specific type of diet, and sometimes it takes months to find the right one with the help of nutritionists. And consultations with nutritionists are a struggle.
"I had to push through the governor. I waited a long time for Vanya to get an appointment. But as soon as I left a request on Roman Busargin's social media, they arranged one for me online that very evening, on a weekend."
With the help of Peptamen Junior formula, Vika managed to resolve Ivan's vomiting and constipation issues. On the new diet, he gained two kilograms in two weeks. Getting nutrition on time was crucial for the boy. But even this, as his mother put it, had to be "gnawed off, jar by jar, from the head doctor of the Central Regional Hospital," and at some point, she had to complain to the governor again.
"I wrote to Busargin on social media again, and forty minutes later they brought me a jar," says Vika. "This jar will last us two and a half days. So what next? Should I write to the governor again? So, on the one hand, they're sending child protection services to me because, in their opinion, I'm a bad mother. But on the other, they can't provide for the child's basic needs."
It's impossible to buy the formula recommended by the nutritionist—it's simply not available in Marx, much less Podlesny. So, two and a half days later, when the can Busargin sent her ran out, Victoria received a different brand of formula for her son—Nutrien Elemental. After that, the boy began vomiting again.
"We're inconvenient," Vika muses. "I'm forced to ask the doctors for additional examinations, additional consultations, additional tests every time."
But the fate of a palliative child depends on this approach, says volunteer Anastasia Arbekova:
"If parents want to develop their child, examine them, and identify the root causes, they'll work tooth and nail to find opportunities. As long as the parents are alive, as long as they're not burned out or tired, such a child will survive. The state won't hold them back."
Arbekova feels that parents of children with special needs are now increasingly receiving offers from doctors to abandon their child, leaving them under the care of the state.
“Unfortunately, such children pass away very quickly,” says Anastasia.
"All he wants is his dad."
The Blokhins' home—now occupied only by Victoria, her husband Igor, and Vanya—has been adapted for the seriously ill child who lives there. In the living room where Vanya's chair sits, there's a huge, bright yellow play mat on which Vika does gymnastics with the boy. Above Vanya's bed is a carousel of brightly colored felt toys, and on the wall are pictures of animals and the alphabet. An extra rail has been added to the crib to prevent Vanya from rolling off. The boy, who couldn't hold his head upright at three, is now trying to roll over from his back to his stomach and from his stomach to his back. He follows objects, recognizes his own, and laughs loudly when his mother does the "swing" exercise with him.
According to Vika, the speech therapist from the village school who was working with Ivan when the guardianship authorities arrived confirmed that the boy was, of course, significantly behind his age, but compared to the development doctors had predicted for him, he was far ahead.
While Victoria and I chat, sorting through and studying the medical documents that fill a sizable folder, my husband arrives for lunch. He eats quietly and then goes to work with Vanya, who has just woken up. He changes his diaper and puts him in his tights. He kisses the boy several times on the cheek, then on the top of his head. He gently places him in bed, strokes his head, and lovingly says:
- Oh, Vanya!
"Vanya adores his father," Victoria says, smiling. "When Igor comes home from work, all he wants is his dad. They sleep hugging each other."
Victoria is attached to her son 24/7. But thanks to her involved father, she can sometimes get out of the house for a few hours. However, she usually spends these hours tackling various household chores.
"Sometimes I can go a month without leaving the yard," she says. "I'm never bored at home—I have Vanya, the cats, the flowers I started growing for myself, and now sometimes I sell them. I have a vegetable garden, chickens, rabbits. I never get bored."
***
When the text was ready for publication, Victoria sent the author of the material a message:
"Good evening! I'm still vomiting from the new formula. Today I decided to consult with the doctors. First, I called the head of the MDP (Marksovsky Children's Polyclinic) at 2:30 PM. She promised to call back in 10 minutes. I'm still waiting for her call. At 3:30 PM, I tried to consult with the gastroenterology department of the SODKB, but they wouldn't listen to me: we don't provide consultations over the phone. I tried writing and calling the deputy head physician of the SODKB, O.V. Koroleva, but she couldn't answer (she was in a meeting). But at 4:30 PM, she called back and said that a Marx pediatrician would be coming tomorrow for a teleconsultation. I asked her to conduct an examination: what component of the formula is causing this reaction? But they said a pediatrician could do that (they supposedly undergo the necessary training). And they insist on tube feeding, although I don't see any need. Without formula, there is no vomiting. I wrote to the head doctor of the Marx Central District Hospital, but he hasn't responded yet. I couldn't get through, as the workday was over. I wanted to ask for a pediatrician to come during feeding time so he could make sure my baby wasn't having any problems with feeding. I'm banging my head against the wall again... Should I write to the governor again?!"
