In the room there is a packed crib. “We didn't get to put it together,” explains Dani (36). Estefanía (36) opens a dresser drawer with baby clothes that will not be used. “This was the first thing they gave us,” says Estefanía, while she takes out two newborn boots that have a “Hello mom” and a “Hello dad” embroidered on each of her feet. Her daughter Siena was born stillborn on August 4 of this year, after a pregnancy termination seven weeks before the due date, for medical reasons.
The almost four hours that Estefanía and Dani were able to spend with their daughter were to say goodbye to her. “At first we weren't sure if we were going to want to see it or not. But as soon as she was born we thought: 'How can I not see her, how can I not want to hold her, if she's my daughter?'", says Estefanía and adds: "Like every mother, when I saw her I thought: 'How pretty she is. '”.
At the hospital they helped them dress her, they were able to take a photo of her, they let them be with her as much as they wanted and they allowed the rest of her family to come in to meet her. They also gave them a box with the clothes they put on her daughter, the ink prints of her feet, a teddy bear to keep with her and another of hers for them to keep.
After what seemed like an eternity, the gynecologist confirmed to Irene what her face had already anticipated: “I can't find the heartbeat,” she told her. She was entering her seventh month of pregnancy and in the last few days she had felt that her baby was moving less. Later, an autopsy would confirm that it was caused by a coiling of the umbilical cord. "I was in shock. “I never imagined that this could happen at this point in the pregnancy nor that she would have to give birth,” she recalls. It was August 2, 2021. A day later, her daughter Valentina was born.
“She was a very wanted baby. After two years of searching and assisted reproduction treatment, I was able to get pregnant. “We were overjoyed,” says Irene (37) and explains that “in this type of pregnancy, you know that at the beginning there can be problems. But everything was progressing well. We were increasingly excited and less afraid. Nobody tells you that these kinds of things can happen.” After the fifth month of pregnancy, her gynecologist had told them that they could “lie down and sleep until delivery.”
Valentina's passage through their lives can be seen in different corners of her house. On a shelf in her room, there is an urn with her ashes next to two photo frames with photos of the pregnant Irene and one with a photo of the baby. In the living room, there is an illustration of them with her daughter in her arms. “No one told me, but I took my cell phone and decided to take photos of her. At first I was afraid to see her, we didn't know how she was going to get out of it. We were lucky that the first midwife who treated us explained to us how important she was. She was born beautiful, pink,” describes Iván (39).
“You will see that each family has their little corner at home to remember their baby,” David (42) had warned this journalist at an event commemorating the occasion of the World Day of Gestational, Perinatal or Neonatal Grief, organized by the Petits amb association. Llum. Before having Pau, their two-year-old “rainbow boy,” David and his partner Laura (42) saw two of their daughters, Noa and Alba, born dead, and lost three other babies in the early stages of pregnancy.
In Noa's case, it was due to a termination of pregnancy, after it was confirmed that she suffered from a rare disease. A year and a half later, Alba's heart stopped beating four months into her pregnancy, with no known cause. As soon as you enter the living room of her house, you can see a shelf with photos of ultrasounds, drawings, dedications, small posters with the names of her daughters and a box with memories of her.
It is not common for a journalist to fail to hold back tears during an interview. Nor do those stories accompany her like an echo for weeks. If looking at death up close is uncomfortable, facing this type of loss is heartbreaking. Perhaps that is why many families feel that their grief is not given space.
“It is not talked about enough, it is as if it does not exist. During quarantine, very few people asked me how I was doing. I think it's because it's so painful. It's something that no one expects. "When you wait for a life, it is not understandable to suddenly have a death," says Estefania in the living room of her house and clarifies: "But she is my daughter, I don't want them to not ask me about her or pretend that she didn't exist." . Dani, her partner, agrees: “No one teaches you that you can bring death into this world. It's something unnatural. At first it is a shock that is difficult to digest.”
“There are people who, perhaps to not make you feel bad, don't mention it to you, they act like nothing has happened. But I gave birth to her. Something in me has changed forever,” says B. (asks that his name not be published), 37 years old. Her daughter India died in the seventh month of pregnancy in August last year, due to twisting of the umbilical cord.
“At first we did feel a little more supported. But, as time went by, which was when we needed even more support, it was like 'that's it'. Well, she's not there, because our daughter is still buried. At times we feel very alone,” says Laura. “In these cases, many people do not know how to approach them. I think they think that if we talk about it it will hurt us more, but it's the other way around, it hurts me that you don't ask me. If I see that I don't want to talk, I will tell you,” says David.
“People don't know what to say and sometimes they stay silent, they don't ask you so you don't remember. But I'm not going to forget my dead son because you don't ask me about him. On the contrary, I want you to do it,” agrees Héctor Linares, president of the Petits amb Llum Association, and adds: “I understand that it hurts to see each other. The death of a boy or girl is a horrible thing. But it is something that happens and silence is always the worst option, because it seems that they did not exist. It is important that it stops being a taboo.”
Although it is difficult to talk about it, it is something that happens. Perinatal mortality is death that occurs from the 22nd week of gestation to 28 days after birth. Its prevalence is estimated to be 1 in every 200 pregnancies.
“That my daughter didn't cry after going out was very hard,” B. recalls and points out: “They don't tell you that something can go wrong. I didn't know this was a possibility, until it happened to me. I think we are wrong not to talk about it. When you tell what you have experienced, you see that other people have also gone through the same thing. "We found out that the son of a friend from my partner's work had died in childbirth."
The first thing B. thought when they told her that her baby's heart was no longer beating was: “How am I going to give birth to a dead baby?” For all the mothers interviewed, it was a shock to learn that they were going to have to give birth to their baby. “When you are in this state, no one really explains to you that your baby is going to be born. You can't imagine that you are going to experience childbirth. They tell you there's going to be an interruption and it seems like she's going to disappear. Then they tell you that the best thing is to have a vaginal birth,” explains Laura.
B. was given medication to induce labor. “They told us that it could take days and that it was important that it be a vaginal birth, in case I want to have more children later. I wanted it all to end now, it was very painful,” she remembers.
At the Vall d'Hebron Hospital they carry out training for midwives, nurses, obstetricians and paediatricians, with case simulations, focused on the different key scenes that tend to be repeated, starting with the way in which couples are received and explained to them that Ideally, the birth should be vaginal and not a cesarean section, to avoid a risk to your reproductive health.
“What many mothers say is 'I want them to take it away and forget about it'. We have to redirect that thinking,” says Dr. Fatima Camba, one of the promoters of the hospital's new perinatal loss support protocol. “We must let them know that the induction of this labor takes time, that it is a very hard process and that this is not something we can change. It doesn't have to be immediate, they can go home and come back when they are ready," says the expert. For her part, perinatal psychologist Anaïs Barcelona points out that “consciously experiencing the birth of a deceased child usually helps to integrate the experience and overcome grief.”
Another fundamental point is the care of the baby once it has died. “Here it is recommended to be able to have it on you, know it, see it. Parents are offered the opportunity to take a photo. If they say no, you can explain why it is important. Even offering the option of keeping the photo so that, if at any time they want it, they can claim it. They can say no in that moment of shock and then end up asking for a photo of the autopsy, which is going to be a thousand times worse,” says Dr. Camba.
“You are completely alienated. If someone doesn't help you, they don't guide you... We were lucky that Mercè and Gemma, a nurse specialized in grief and a neonatologist, accompanied us very well throughout the process. They told us to hold him, to take photos, that his brother knew him. We were able to bathe him. All things that would never have crossed my mind and that will stay with me forever. It's about building memories, something to hold on to when you are completely lost," says Héctor Linares and assures: "There are many families who have not been helped. They don't have any photos or the only one they have is the autopsy. They couldn't say goodbye or be with him. This somehow deepens a pain that is already gigantic.”
“Contemplate the son who has died, dress him and then keep those clothes with his smell, have the prints of his feet or hands. All of this will mean that during the therapeutic process you can connect with the life you had,” says therapist Daniel Bonabia, who promotes the mutual aid groups of the Petits amb Llum association, for mothers, fathers or relatives who are going through a process. perinatal or neonatal grief.
“It is highly recommended because it helps to understand what has happened and to be able to grieve,” says perinatal psychologist Anaïs Barcelona. Some associations, such as Umamanita or La Capsa dels Records, offer memory boxes in hospitals so that grieving families can create memories with their babies.
At the Vall d'Hebron Hospital, they attend to around 300 births of deceased babies per year. There are two maternity floors and, whenever possible, we try to place these families in a single room, on the floor where there are fewer babies. This is how Dr. Fatima Camba explains it. “I wish we had a care area for these families, but hospitals have their structural limitations,” says Camba and adds: “In addition, the mother must be cared for by professionals who are experts in that area. A balance must be found between the mother being in a place that respects the situation that is happening, but that is also safe for her. What we try is to discharge them as soon as possible. "Usually, she places them in the farthest delivery room to avoid hearing other babies' cries."
One of the objectives of the Petits amb Llum association - explains its president - is “for hospitals to incorporate protocols so that we do not depend on being lucky enough that the staff who cares for us at that moment has minimal training to be able to accompany you in the worst moment of your life.”
From the Communication Office of the Health Department of the Generalitat, they explain to La Vanguardia that, “within the scope of the Perinatal Mental Health Plan, they work with a group of experts and entities linked to perinatal grief to unify grief care. perinatal throughout the Catalan territory, provide professionals with procedures for action, guarantee continuity of care, promote the grief of parents and their environment and raise awareness among health professionals.
For Laura, “it would be nice if there was a protocol so that they would tell you clearly that you are going to have to give birth and that then the best thing is for you to see your daughter. From the moment you are induced until labor begins, there is time. I was there for a whole day. More information should be given and the family should be given time to assimilate it and decide. They tell you things very little by little. If we had been informed of everything from the beginning, we would have experienced it more fully. We would have told our family to meet her. But at that moment you are in shock. I saw it as strange: how are they going to see the dead girl?”
“Even if they were completely shocked, these couples remember every word each doctor said to them. But that daze does not prevent them from recording everything. Everything that accompanies this moment will make that therapeutic process lighter or harder later,” says therapist Daniel Bonabia.
“What will your daughter's name be?” a nurse asked Laura. She still treasures that question. “It was very delicate. We decided to name it Alba, for the saint of that day,” she explains. Irene still hurts from the moment she went to get her daughter's ashes from the funeral home. “They couldn't find them. Then they told me: 'It's a fetus, it's in your name.'” I responded that it was not a fetus, that it was my baby and it has a name.”
“The words stay with them and that will influence how they process grief. That is why it is so important to watch the language. For these parents, it is not a fetus or a stillbirth, it is their child,” says Anaïs Barcelona and adds: “Losing a child is already a rather painful experience. We have to monitor these processes very well to prevent it from being more traumatizing.”
“There is a common denominator which is the invisibility and the little recognition given to these children, not only at a social but institutional level. Until very recently, if your child was stillborn he could not be registered. Therefore, bureaucratically you were neither father nor mother and, in the case of the man, you did not have the right to any sick leave other than what your doctor wanted to give you. Now there is a ruling that says the opposite,” explains Héctor Linares.
“Thank God, at my work they understood the situation perfectly. We felt very understood, and they gave me a leave. But you have to renew it and explain every time everything that has happened to you, justify that you are still bad," explains Dani and warns that: "It is clear that the mother suffers a lot, but the father is sometimes treated like a companion or one more family member. Your figure is that of your partner's support. At her CAP they give her a psychologist appointment and you stay in the waiting room.”
“You are not psychologist meat,” a psychologist told Héctor Linares the same day he was told that his son was going to end up dying. “Poor wife,” the mutual insurance company's psychiatrist told Iván and made him fill out a questionnaire to check that he was not simulating symptoms. Three days later, a report arrived saying that he was fit to work and that he was recommended to return to work. Three months had passed since the death of his daughter. “I had already spoken with the company about returning after Christmas, because I knew it was going to be a difficult time. I felt very pressured,” he explains.
“It is true that we carry it inside and give birth to it, but they also suffer and should have support,” says B. “The man is the forgotten one because it is believed that he has to take care of his wife, who is the one who carried the child for months in the belly. He must be strong. But that's not the case," explains therapist Daniel Bonabia. The families interviewed agree that psychological support is essential, but they assure that it does not arrive in a timely manner. Some have had to wait three months for a first appointment. Laura and David are still waiting for her.
In the Vall d'Hebron perinatal grief support training, we also work on how to guide parents with the procedures they must do after childbirth. “Many families here are alone. There is a lot of information deficit. It is important that they are explained what they have the right to and how to manage their body,” says Camba.
Some of the people interviewed chose to carry out a collective burial, in the 'Petits Estels' space, in the Montjuïc cemetery, which is reserved for gestational and neonatal mourning. In the white-topped niches, which bear a distinctive star, there are drawings, dedications, stuffed animals and photos. “It gives me peace of mind to know that my daughter is there, that I can bring her some details and talk to her,” explains B.
The free mutual aid groups offered by the Petits amb Llum association arise in response to the lack of psychological support. “It is a place where the same language is spoken, where the person is collected. You can speak openly, there are no labels or judgments. Furthermore, when the other person speaks, you connect with your pain,” explains the therapist who energizes them, Daniel Bonabia.
For many of them, it has helped them release those feelings that cause guilt and that make them feel bad or selfish. Not being able to see or approach other pregnant women or babies. It may be hard to digest the news of a close person's pregnancy. Feeling angry at certain very common comments, such as “Don't worry, you're young,” “You'll have another one,” or “Are you still doing that?”
“There are no good or bad emotions. All emotions are for a reason and you have to live them,” explains Bonabia. “People are uncomfortable with your pain. They pressure you to get back into life. We already know that they want to see us well, but to heal we first need to be able to be bad, not hold it back," says Iván.
“There are millions of projected moments that are not going to come true. And it will continue to be that way. The pain is immense, it is visceral. We now have Nico, who is our little rainbow and we are very happy to have him, but a part of us died that day. She will always be with us and we will always think: 'What would our life be like if she were here?'” says Iván.
For all the people interviewed in this report, the passage of their children through their lives has left an indelible mark. They have a name. They are a member of the family that will always be missing. They have left a void that is impossible to fill, replace, forget or overcome. Also, a love that will always accompany you.
