“When your child dies, life stops completely,” says Andrea, who lost her son Carlos the day after giving birth. Patricia perfectly remembers Jan’s last breath, from which she and her husband were forced to disconnect when she was 22 days old: “You are never prepared for something like that.” And for Mireia, for her part, it hurt to be alive and to know that her daughter Mérida, who had been born just six days ago, was dead.
Mireia, Patricia and Andrea or – as they also like to be called – the mothers of Mérida, Jan and Carlos share the pain of the death of a child a few days after his birth, also known as neonatal death. The three babies arrived extremely prematurely, between weeks 26 and 28, and a portion of these women left forever after the death of their children. “How do you become you again if you’re missing a piece?”
Grief is never overcome, you learn to live with it and accepting it is the best way to move forward. Although it is very painful, the three agree that their children are present in a very special way: “The love they have brought us continues and will always continue.”
Although many premature babies survive, up to 65% of those born before week 28 and up to 95% of those born after, the reality is that not all. The three little ones were not able to see the outside, since they died in the hospital. The only time Andrea was able to take Carlos, he had already died. “Everything seemed to be going well, no one expected it. At dawn, one of the nurses opened the door and she didn’t have to say anything.”
Even so, he assures that he would relive the entire horror just to be able to have his son in his arms again. Everything happened very quickly, but she missed having a specialist accompany her and explain everything she could do to say goodbye to her son. “At that moment you can’t think. How are you going to make such important decisions if you don’t know you have them?”
Something similar happened to Mireia and her husband when they received the call from the hospital telling them to come quickly. Upon her arrival, they were told that Mérida had died and if they wanted to see her. “They took us to a room where there were five more babies in their incubators and every ten minutes a health worker came to see if we were finished,” says this mother, who was not able to say goodbye as she would have liked and complains that they did not inform her of anything either.
Parents have the right to say goodbye to their baby for as long as they want, since they will only have that one opportunity. They can also ask to put it on their chest, shower it, dress it or photograph it. “Even if you see it as an atrocity, take a photo of it, sing to it, tuck it in…These are things that people who have not experienced this may not understand,” advises Mireia. Experts say that until recently there was a lot of taboo about this connection, but it has been proven that it is very important to start the duel well.
Specifically, the Neonatology Unit of the Sant Joan de Déu Hospital informs families about what they can do when their baby dies. Parents can perform some type of farewell ritual, baptism, take photographs and be accompanied by some family members if they wish. “Now we have individual ICUs so that the family can say goodbye with greater privacy and thus avoid alarms from the incubators,” explains Ana Morillo, pediatrician at the unit.
Unlike Andrea and Mireia, Patricia and her family were able to say goodbye to Jan before being forced to disconnect him. “They invited us for the family to come to the hospital to say goodbye because no one knew him yet and so we could at least see him.” They were able to share that moment and enjoy skin-to-skin contact, shower him and take photographs. Although he admits that it was a very painful farewell, it was also very beautiful at the same time.
The three mothers report that they felt alone due to the lack of support and advice in the different hospitals. Mireia gave birth in August and was told that the grief psychologist was on vacation. She waited for her call which didn’t come until October. Patricia asked for a psychologist during her hospital stay, but she didn’t arrive either. And Andrea, on the other hand, was able to count on the help of a psychologist to inform her eldest daughter, then five years old, that her brother had died. However, she did not have subsequent therapeutic follow-up.
It is very important for older siblings to know their brother and explain to him in a clear and simple way that he has died. These three mothers talk with relief and pride about the naturalness with which their daughters – Mariona, Claudia and Ariana – accepted the news. “The fact that Mariona has accepted her brother’s death so well has healed me,” says Mireia and says that when she goes out to walk the dog with her daughter, she points to the star that shines the brightest and says “there’s the grandma.” .
After saying goodbye to the baby, families decide whether to bury or cremate. “At that moment you have to make the decision to choose your son’s coffin when what you wanted was to accompany him to his wedding. Then you are faced with the shame of the brutality of the price they ask of you,” Andrea denounces.
Specifically, the transfer and cremation of Mérida cost the family almost 3,000 euros. “The funeral home told us that if we couldn’t cover the cost, the little one would go to a common niche.” Currently, the Montjuïc cemetery in Barcelona has a worthy space to make gestational and neonatal mourning visible. In a niche with a tombstone designed with smiling stars, which represent the permanent presence of babies, families can bury their sons and daughters and remember them, and not like until recently, when the burial was done in a gloomy and gloomy space. unidentified.
Families advise that many insurance companies cover cremation during the first month of life. This was the case of Patricia and Andrea, who did not have to pay any amount, since the children’s grandparents had a policy.
In addition to denouncing the high cost of cremation in newborns, they all ask from the rooftops for a protocol that explains, both on paper and verbally by professionals, what rights you have when your baby dies. Furthermore, they claim that there should be psychological support in the hospital from the first moment and that it should include follow-up.
A few months ago, Sant Joan de Déu began grief support for parents who have lost their children to have individual, couple and, if required, group meetings. Claudia Alonso, a nurse in the neonatal ICU and member of this team, explains that it is a process of “emotional ventilation” that consists of emptying oneself and expressing what they feel. “Many times they do not have spaces to be honest and let the pain out because sometimes society pushes the opposite.”
Families complain that the hospitals themselves should have these services and that it is not the parents who have to create associations such as Petits amb llum to make up for the lack of resources. Mireia, Patricia and Andrea met at this non-profit entity that is a meeting point for “broken parents.” Thanks to grief groups, many wounds have healed by listening to similar experiences and feeling supported by an environment that understands them.
Before leaving the hospital, in some centers families receive a small card – as a souvenir – with brief information about the baby and a footprint. All of this depends on the good will of the nurses and assistants, since there are no resources invested at the national level to deliver a box of souvenirs to use.
Specifically, at the Sant Joan de Déu Hospital they deliver a box that contains a small bag sewn by older ladies, the size of which depends on the baby’s week, and specific material so that parents can take hand and foot prints. There is also a bracelet that is put on the baby’s wrist and the other on the mother as a bond that lasts over time; a teddy bear and a battery-powered candle, among other details.
A group of four mothers, including Mireia, carried out an initiative during the pandemic that consisted of creating a specific box thinking about what families would want to find in these memory boxes. Thanks to the altruistic contributions and the collaboration of the hospitals, they have managed to ensure that their project reaches more than 22 hospitals in Spain. Professionals agree that they are important to connect with the baby and cope with grief.
Grief begins in the hospital and continues when the parents arrive home without the baby. “When I left the hospital I saw that life went on, except for me. The belly reminds you that you feel empty, the chest that no one is eating that food, and the set up room that your baby is not there.” Furthermore, pediatrician Ana Morillo explains that the mother experiences the same physical and hormonal changes as any postpartum, and her body also constantly reminds them of her loss.
“Neonatal grief has different and specific characteristics of a child who has been at home and people have known him,” explains Morillo. Experts assure that it is a duel that is underestimated by society because there is a double taboo. “On the one hand, infant or pediatric death already is, but neonatal death is still doubly invisible because they are children who have not been introduced to society,” details Marta Palomares, nurse at the Sant Joan de Déu unit.
Many times these mothers have had to hear comments like “it’s better that it happened to you now and not later” followed by “you haven’t had time to get attached” or “you’re still young.” Nurse Claudia Alonso says that these families would not receive these types of messages if they had lost a three-year-old child. “In those cases, everyone understands that that child had his own identity and no one could replace him.”
If there is one thing they reiterate, it is that they need to talk about their babies naturally. What hurts them the most is that they pretend they don’t exist and don’t ask about them. “They don’t want to hear that babies die. They don’t want to hear that you are broken because your son is not there,” says Andrea and adds that “so that others do not suffer, you suffer more as a mother.” So, what can society do to support families? “Sometimes you don’t even need words, but understanding, listening and a hug,” says Mireia.
The unexpected death of a baby breaks families and many women want to try again for another baby. This is why many grieving women are pregnant. “It is a biological necessity. On the one hand, there is a syndrome of replenishing the nest and, on the other, society also encourages ‘replacing’ the loss,” says Marta Palomares. And she adds: “You have to work hard to bond with this new member of the family and she is not perceived as a substitute so that she comes into your lives at the most appropriate time.”
This is what happened in the case of these three mothers who, in less than a year, became pregnant again. It’s not about waiting more or less, they do warn that this pregnancy is going to be a constant mental struggle because you think it could go wrong again. “I would tell parents to go with what they feel. I got pregnant after four months without looking for anything. Maybe if more time had passed I would have become entrenched in fear and not have had my third daughter.”
Babies born after perinatal or neonatal loss, regardless of the circumstances, are called rainbow babies in relation to the light they bring into their lives after a storm. The colors that came into the lives of these mothers are Iris, Carla and Iria. Three girls who are less than two years old, who remind them that they can “trust life again.” The arrival of these babies does not take away the pain at all nor is it a matter of “turning the page.”
Andrea says that when Iria sticks her head out and cries, as soon as she is born, she tells me “I’m here, mom.” “I see her grow up and I think a lot about the fact that I won’t see all of that with her brother. But I always say that she comes to live for both of us. Iria is there because Carlos is not there and it is that balance that pushes you to continue.”
