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Мне пришлось рожать, зная, что ребенок умрет

Irina’s story lays bare how medical institutions and society leave mothers who lose infants or give birth to gravely ill children to endure grief, guilt, and impossible choices largely alone.

Kholod · By Yulia Mikhailova · 13 July 2026 · read the original in Russian →

На 30-й неделе беременности Ирина (фамилия не указана по просьбе героини) узнала, что у ее сына серьезная врожденная патология. В аборте ей отказали. Когда мальчик родился, не мог самостоятельно дышать, и у него были обнаружены нарушения центральной нервной системы и развития мозга. Он прожил всего два месяца и умер в хосписе, из которого Ирина не решилась забрать его домой. Столкнувшись с этой трагедией, она обнаружила, что врачи и медперсонал не умеют обращаться с матерями, которые потеряли младенца или родили ребенка с серьезным заболеванием. Впрочем, то же самое происходит и в обществе в целом. Ирина рассказала «Холоду» свою историю.

At the thirtieth week of pregnancy, Irina (her surname is withheld at her request) learned that her son had a serious congenital condition. She was refused an abortion. When the boy was born, he could not breathe on his own, and disorders of the central nervous system and brain development were found. He lived for only two months and died in a hospice, from which Irina never found the courage to take him home. Confronted with this tragedy, she discovered that doctors and medical staff do not know how to deal with mothers who have lost an infant or given birth to a child with a serious illness. The same, however, is true of society at large. Irina told Kholod her story.

Материал создан на основе интервью, взятого редакцией у героя. Речь героя отредактирована и сокращена для ясности с согласия героя, проведены фактчек и корректура. Мнение героя может не совпадать с позицией редакции.

This piece is based on an interview conducted by the editorial staff with the subject. The subject’s speech has been edited and condensed for clarity with her consent; fact-checking and proofreading were carried out. The subject’s views may not coincide with the position of the editors.

When everything is all right, doctors do not run out of the room like that.Когда все хорошо, врачи вот так не убегают из кабинета

In October 2020, I found out I was pregnant. It had not been planned: Kirill (name changed. — Kholod) and I were not married then; we had only just moved in together. But even so, the child was very much wanted by both of us. The very next day after the news of the pregnancy, we put our names down at the registry office, and in December 2020 we were married.

The first months passed easily and happily: I was surrounded by care, the pregnancy was calm, I had no anxieties or complications. I hoped it would be a boy; for some reason I wanted a son in particular.

The first two screenings went wonderfully. At the second, the doctor told me with confidence that everything was excellent with the baby and that it was a boy. I immediately decided I would call my son Bogdan, ordered a crib, a stroller, a baby bath. I began buying clothes for the baby, watched my belly grow, and felt the first kicks.

On April 22, 2021, my husband and I went for the third screening. We very much wanted to see our baby in 3D, so I booked us into a private clinic, and Kirill took a day off especially for it. In the first minutes of the screening everything was fine; the doctor smiled at us and said we were going to have a tall boy, just like his father. Then something changed in her face; she seemed to lose her bearings. She asked us, “Did anyone tell you anything before?” Not understanding what was wrong, we said no, everything was wonderful. Then the doctor got up from her chair, took her phone, and left the room. We stared in bewilderment at the image of our son on the screen and heard her behind the door speaking to someone in a raised voice.

After a while the doctor came back and, still talking on the phone, began asking me where and when I had had the first screenings. I had all the papers with me, I showed them to her, and she went out into the corridor again, still without explaining anything to us.

The worst thoughts tormented me. I understood that, when everything is all right, doctors do not run out of the room like that, and I imagined that I was lying there on the couch, that the child inside me was dead, and that she did not know how to tell me. When she came back to us again, without naming any diagnoses, she said I urgently needed to go to my obstetrician-gynecologist and get a referral to MONIIAG, the Moscow Regional Research Institute of Obstetrics and Gynecology, where they would assemble geneticists for a consultation.

In the report the doctor gave me, I read the diagnosis: agenesis of the cerebellar vermis, Dandy-Walker syndrome, ventriculomegaly (Dandy-Walker syndrome is a congenital pathology of the nervous system, an abnormal development of the cerebellum and the surrounding cerebrospinal-fluid spaces; agenesis, meaning underdevelopment or absence, of the cerebellar vermis and ventriculomegaly, enlargement of the brain ventricles, are key signs of this anomaly. — Kholod). I had no idea what it was; I had not even imagined such diseases existed. And no one explained anything to me.

Hysterical, I called my mother, who was then working as the senior nurse in an admissions department, and asked her to run to my gynecologist as quickly as possible and explain that I needed a referral to MONIIAG. Kirill and I were forty minutes’ drive from my women’s clinic, and I understood we would not get there before consultations closed. My mother responded, and we met her there. I was sobbing all over; they tried to calm me down: they said it might be a mistake and promised to get me the referral first thing the next morning.

I do not remember what I was thinking then. I only remember that I did not sleep that night. I sat with my phone in my hands and read everything I could find online about those diagnoses. What I read made my hair stand on end. No sooner would I pull myself together and calm down a little than another wave of hysteria would wash over me.

Every kick brought incredible pain.Каждый пинок приносил невероятную боль

In the morning they got me the referral, and I went to MONIIAG. Because of Covid restrictions, my husband was not allowed into the building, and I had to go alone. I spent three hours in the queue for the geneticists. In the next room a gynecologist was seeing patients, and while I was thinking about the worst possible thing, a whole procession of happy expectant mothers came out of her office. That terrible dissonance made me feel even worse.

When the doctor finally did the ultrasound, he called in a second doctor. They talked to each other and told me nothing, though I was in tears and begged them to tell me something, anything. But they finished and sent me back into the corridor to wait for the report. My mother called to find out what the doctors were saying. But I could not tell her anything; I could only cry into the phone.

Now I understand that for doctors such cases are routine, and they cannot let every person pass through them. But at the time I was struck by the cold-blooded way they read out a heap of diagnoses I did not understand (the report of the MONIIAG perinatal consultation, which is in the editors’ possession, states that congenital malformations of the central nervous system were found in the fetus: Dandy-Walker malformation, agenesis of the corpus callosum, and severe bilateral ventriculomegaly. It notes that a malformation of the cerebral cortex could not be ruled out. — Kholod), and told me that things were such that absolutely anything could happen, at any time: my son could die in utero, or he could live for several days after birth. But in any case he would die. And if he did live, it would be for an extremely short time. They would be able to determine the timeframe more precisely after he was born, if he lived to that point.

I signed papers saying that everything had been explained to me and that I understood everything. Kirill met me outside the gates and hugged me. Then I could no longer hold on; I fell to my knees in the middle of the street and cried. I did not understand why this was happening to me and to my baby. After all, even people with alcoholism and drug addiction, people who do not take care of their health, can give birth to healthy children.

I went to the women’s clinic, to the hospital gynecologists, called private clinics, and begged them to help me terminate the pregnancy. At that moment it seemed to me the only possible solution. I knew that even at such a late stage it could be done on medical grounds, but wherever I called, they refused me.

“I’ll find some basement where it can be done,” I said. “You don’t understand that inside me is a son whose death has already been predetermined. I don’t want him to be born and suffer. I don’t want him to be in pain, I don’t want to be in pain…”

Every kick and movement of his, which only recently I had felt as something joyful and beautiful, now brought me incredible pain. I understood that now he was moving his little arms and legs, but once born, he would not be able to do that anymore. And that thought drove me mad.

At the women’s clinic everyone knew about my case, saw the state I was in, but no one offered me psychological help. And I needed it very badly then. My husband, being a serviceman, was on duty all day; my mother also worked a great deal, and I was left alone with my terrible thoughts. I scoured the entire internet looking for an answer to the question: was there even the slightest chance he would survive and we would be able to maintain his condition? But everything I read came down to the same thing: children with such diagnoses do not live long. The outcome was clear; all that remained was for me to wait for it. It was unbearable.

We were advised not to wait for a miracle.Нам посоветовали не ждать чуда

At thirty-nine weeks I was admitted to the maternity ward at the Lyubertsy maternity hospital, and on June 16, 2021, they performed a cesarean section. That was how our son Bogdan came into the world. They gave me a few minutes to look at him and kiss him, and then they took him away. My son had no external defects; to look at him, he was an entirely ordinary baby. I spent twenty-four hours in intensive care, and then I was moved to a private room. Kirill was there with me, and they brought Bogdan to us several times and put him to my breast.

The next morning he began having severe convulsions, and he was taken to pediatric intensive care. Because I had no Covid test, I was not allowed in to see my son, but Kirill visited him and showed me photographs: Bogdan was lying there covered in all sorts of wires and tubes (his swallowing function was impaired and respiratory insufficiency was found, so a nasogastric tube was inserted. — Kholod). Several days later, Bogdan was transferred to the pathology department for premature infants.

At the Lyubertsy maternity hospital and the children’s hospital, the orderlies, nurses, and doctors treated me like a person. They did not speak to me as just another medical case in their practice, but as a mother who was suffering. When they took my son away from us, the head of pediatric intensive care spoke with me. She said that, to her great regret, the diagnoses had been confirmed (according to documents in the editors’ possession, Bogdan was diagnosed with a congenital malformation of the central nervous system, hydrocephalus of the fossa, agenesis of the corpus callosum, a cerebrospinal-fluid cyst of the posterior cranial fossa, microcephaly, and other reduction deformities of the brain. — Kholod) and the prognosis was very bad: children with such diagnoses do not live to four months.

She advised us not to wait for a miracle and said that when Bogdan turned one month old, they would assign him palliative status, transfer him first to the hospital’s department for palliative children, and then to a hospice in Domodedovo. She advised us to go to the geneticists at MONIIAG and have genetic testing done. We followed her advice, and from the genetic analysis we learned that the break in our son’s gene had occurred in the first days of pregnancy. It happens rarely, but it happens.

But even after receiving the test results, I still did not part with the thought that I was defective, that I had failed to carry and give birth to a healthy child. During that period I was in a very bad state; I constantly had emotional breakdowns, disgusting thoughts spun in my head, I did not eat and lost a great deal of weight. Now I regret and reproach myself for deciding to place my son in hospice. But then the mere thought that I would have to change those tubes myself made me shudder.

I felt sorry for myself, wanted to shield myself from the terrible reality, did not want to become even more attached to my son only to make it still harder to say goodbye to him later. And I was also very afraid of harming him: inserting the tubes wrong and thereby making things worse for him, more painful. In the end, I did not want him to die in my arms. I was afraid something would happen to him and I would panic and not be able to help him.

“If he were your son, you would be with him.”

I told my mother and the hospice staff about these fears. My mother supported me, but at the hospice not everyone understood me. The staff psychologist with whom I spoke asked the personnel not to pressure me and not to manipulate me. But the nurses and the head of the hospice insisted that I take Bogdan home and made me feel guilty for not doing so.

Bogdan had convulsions, but the head of the hospice assured me he did not. She told me she knew a boy who lived with the same diagnosis (one diagnosis, not the whole combination) as Bogdan, and that he was already eight years old. In every possible way she led me toward the thought that I had to take him: after all, I was his mother! When my husband and I called and asked how our Bogdan was, they answered with sarcasm: “If he were yours, you would be with him.”

That attitude made me want to scream. It seemed to me that people who work with children who cannot be cured ought to be good psychologists and know how to support not only their patients, but their parents too. I thought they ought to understand that people are different and come to terms with grief in different ways, and that they should treat any decision by mothers like me with patience. But in reality it was not like that. And in the end the hospice told us that, under their regulations, they could no longer care for our son.

I found a baby home for special-needs children in Kolomna and thought of placing him there. To do that, we needed to formalize an agreement with the guardianship authorities and the medical institution, setting out that we would visit Bogdan, take him home on weekends and holidays, but that the rest of the time he would be cared for by medical staff.

My husband said he understood that at home it would be me, not him, who would have to sit with Bogdan, since he was on duty all day. He assured me that he would support whatever choice I made. But his mother condemned my decision, and she and I had a very unpleasant phone conversation. So unpleasant that I even hung up, stood opposite my husband, and shouted that he could do whatever he wanted: he could hate me, he could leave me, but I had made my decision for myself.

They asked what coffin and little suit I wanted for my son.Спрашивали, какой я хочу гроб и костюмчик для сына

We never returned to that subject again. In general, he and I did not really speak frankly or discuss the situation with Bogdan. Everyone lives through grief in their own way, but I am certain that mothers still experience this kind of thing more heavily than fathers do. A few days after the conversation with my mother-in-law, Kirill and I went to the guardianship office, but we never reached the building. He got a call from the hospice and was told that Bogdan had died. I did not hear the words, but I understood everything from the expression on his face.

I knew it would happen and had been preparing myself for that outcome, but it turned out that it is impossible to prepare for such a thing. We embraced; I cried and felt my whole body trembling. That was the first time I understood what it feels like when the ground gives way beneath your feet.

Everything that happened afterward I remember in fragments. I told myself I would be strong and hold on, but I could not manage it. I tried to think that Bogdan was all right now: the tubes no longer troubled him, the machines no longer beeped around him. But it was still hard. In the line at the morgue with us were two young men from the funeral agency. They approached the organization of the funeral with great enthusiasm, asking me there in that line what coffin and little suit I wanted for my son.

I ran out of the morgue because I could not take part in it anymore. Even there I behaved like a coward…

I knew I wanted to bury my son. It was important to me that he have a grave, a place where I could come to him. But I also understood that I did not want a farewell ceremony with an open coffin. I wanted my son to remain in my memory as I had seen him in life. And Bogdan’s coffin was closed.

When the funeral agent, alone, easily and simply took that little coffin out of the hearse and carried it to the grave in the cemetery, I lost all self-control. When they buried him, I felt that I no longer had any reason to live. At the funeral and afterward, my mother supported me very much. I think I would not have managed without that. My husband did not show emotion, and the conversation my mother had with my mother-in-law left the impression that I had attended a parade of hypocrisy. My mother later told me that my mother-in-law had said to her, “How good it is that Bogdan didn’t die at home,” as if only a few days earlier she had not been demanding that I take him from the hospital.

I hated pregnant women.Я ненавидела беременных

For the first period after the funeral, I tried to arrange my days so that I did not have a single free minute. Not one chance to stop and think. I exhausted myself physically, went to my mother’s place (she has a private house), and was constantly building, cleaning, and making something there. There were tears, but I tried to cry off to the side and quietly. I knew my mother was very worried about me, and I did not want her to see my tears. As I understand now, holding back my emotions was a mistake. At such times it is important to allow yourself to be angry; if you want to scream, or even smash or break something, then that is what you should do, otherwise those emotions will accumulate inside and things will only get worse.

I hated pregnant women and tried to avoid mothers with strollers. Once I burst into tears when I heard a two-year-old calling for his mother.

Every time I thought: these women have their own little miracle, and it calls them “Mama.” A few years will pass, and they will take that miracle to kindergarten, then to first grade. They and their miracle have a shared future, and Bogdan and I do not have that future.

I tried working with psychologists. The first specialist I turned to reminded me of the nurse from the hospice who had spoken to me with the most sarcasm, and I could not continue working with her. For seven or eight months I spoke with a male psychotherapist, but I stopped working with him too. I felt that I was burying myself even deeper in my grief and asking questions no one would ever answer for me. No one would tell me whether I had been a bad mother, or why what happened had happened specifically to me and Bogdan. Therapy did not make things easier for me.

In our society, it is not customary to discuss the loss of a child, and many people do not understand how traumatic an experience it is. For example, my closest friend, who has two children of her own, my godchildren, once compared my suffering over my son’s death with that of our neighbor at the dacha. Her three-year-old son with cerebral palsy had died, and my friend said, “It’s better the way it was for you, that he died at two months, than like that, when the child is older.”

I would never have been able to bring myself to say such a thing to a mother who had lost her child. Because it makes absolutely no difference at what stage a mother lost her child: in utero, during birth, in infancy, or already at an older age. In any case it is an enormous grief and an enormous loss.

People unfairly try to shame women for excessive emotionality. In the hospital they are not offered psychological help, and they have to cope with everything alone. I am very glad that on the internet this topic is ceasing to be forbidden, and that many mothers find the strength to talk about their experience. I always thought it was unjust that people suffering from alcoholism have their own communities, where they can come and anonymously share their pain, while mothers who have lived through the deaths of their children have no such community.

But recently I returned to Instagram — after my son’s death I stopped going on social media — and found exactly such a community. It is the blog of a woman who describes in detail what she feels in connection with the loss of her child, and invites other women to share their stories in the comments.

I am very grateful to this blogger for what she does, but unfortunately, even in such a supportive community, one can encounter condemnation. Recently in the comments we were discussing the decision of some mothers not to bury their stillborn children. And many wrote that they did not understand mothers who had not taken their children’s bodies from the morgue. I, however, believe that no one has the right to judge women in such a situation. A woman may not want to bind herself to the place where her child will be buried; she may want to avoid the trauma that the funeral and the sight of her dead child could inflict on her. And that is her right and her choice.

Brother Bo.Братик Бо

For some reason people think grief has an expiration date. A woman grieves for three days, and that is enough. But it seems to me that grief does not pass: it is always with you; new events simply layer themselves over it. In my case, that event was a new pregnancy. I understood that I had driven myself to such despair that I needed a way out. I needed to accept reality and move on — with the memory of my son, but move on.

So my husband and I began planning a second pregnancy. When I found out that those plans had become reality, and on top of that that we were expecting twins, the emotions were indescribable. Ecstasy, enormous pain, and fear all at once. I went for an ultrasound every two weeks. It was my fixation: I wanted to feel that I was in control of the situation. But my control was illusory, if only because the girls were born two months early, on April 12, 2023. As the first time, I had a cesarean section; as the first time, the children were taken away immediately, and I went to intensive care. Masha and Nastya were tiny, and the doctors could not give me any favorable prognosis.

I lay in intensive care thinking that if my girls died too, my own outcome would also be obvious. But gradually they began to gain weight. When it became safe, I asked the doctors to do an ultrasound of their heads to make sure they did not have the same problem Bogdan had. The doctors accommodated me, and the results were reassuring.

All the medical staff at the maternity hospital knew about my situation and treated me with understanding. I was thirty-two years old, and yet I did not know how to behave with children. I did not know how to hold them, how to do the most elementary things. The nurses answered my stupidest questions without any judgment and explained every piece of information to me in detail.

My girls are three years old now; they are incredibly lively and active. Our only problem is that they are not speaking yet. But I think that in their own time they will catch up. For now they pronounce individual words and communicate with me and with each other through a set of sounds that we understand. There is a great deal of trouble with my daughters, and they keep me afloat, so I have no chance to let go. But that does not mean I do not think about my son. I remember Bogdan every day. He is an inseparable part of our life. Photographs of Bogdan hang above my bed in the bedroom; the girls know that this is their little brother, they go up to them and say, “Bo.”

On June 16, Bo would have turned five. I understand that, if he were alive, I would have prepared for his birthday. I would have known his favorite characters and cartoons, organized a celebration for him, and chosen gifts. As it is, all that remained for me was to bring him another toy to his grave.