One in every four pregnancies ends with the loss of the baby during pregnancy or during the first days of life. This is what is known as perinatal or neonatal grief. On the occasion of the World Day of Perinatal Grief, which is commemorated on October 15, we interviewed Mireia Bravo and Maria Simón, members of the Petits amb Llum association. This entity accompanies parents who have lost a child and wants to give visibility to a grief that society often turns into taboo.
What is perinatal grief?
Perinatal grief appears when a family, mother, father, grandfather, grandmother, brother, sister, uncle, aunt, etc., suffers the loss of a baby. This loss can be both gestational (died in the mother’s womb) and neonatal (within a few days of the baby’s life). I think it is the worst pain that a person can suffer since most of the time there is no time to create memories together and it is very difficult to visualize, express and for people to understand.
What differentiates this grief from others that we can live throughout our lives?
Most of the time there are no memories or very few, such as an ultrasound or a photograph in the case of more advanced pregnancies, the rest of the family or close environment has not been able to know this being in life. The only thing the mother and father can remember is pain and it is very difficult to overcome. Like most people, he doesn’t want to talk. It is as if this baby had not existed, the environment is not comfortable when talking about the dead baby. On the other hand, the mother and father have been “x” weeks or months preparing a future full of hope and happiness and suddenly everything ends and disappears because unfortunately the current legislation does not allow to recognize this son or daughter who was born lifeless and never it can be registered in the family book or in any civil registry. Families end up seeing a simple medical report with the so-called “Fetus, son of …” (gestational deaths).
How frequent is it? What data do we currently have?
One in four women suffers a perinatal loss. It is a very high figure but very
hidden. In fact, last year, thanks to @tempsdedol, the hastag #soyunadecuatro was created to symbolize the large part of the population that goes through a duel of these characteristics, also to give voice to the little that is spoken or allowed to speak; since they always try to hide or not speak. This prohibition makes this duel more painful and at the same time difficult to face and overcome. That is why October 15 is so important to us as Petits amb llum Day and the day of perinatal grief becoming visible.
Why has this death become a taboo and we speak so little?
Gestational death, and especially in the first trimester, is a taboo subject because the fact that a couple during the first trimester can lose a pregnancy has become normalized. What society does not understand is that from the minute a couple knows that they are expecting a son or daughter, they begin to get excited and create expectations of what the new life will be like with one more member of the family. You don’t lose a child and that’s it, you lose many things that have been projected perhaps for many months before.
There is a taboo within the taboo of gestational death when we talk about interruptions of pregnancy and it is that sometimes by deciding to interrupt it causes that “as if the family wanted it that way” it should not do so much damage, but it is time where the feeling of guilt appears, of having “hurt” the baby or even of having wanted his death. Often the interruptions of pregnancy are caused by a malformation of the baby and in some mothers there is the added feeling of anguish for not having been able to carry a healthy baby. These issues are difficult to deal with and that is why we talk so little and they become taboo.
What is it that we cannot and can say to a mother and father who have lost their baby during pregnancy?
The most important thing we can say to a couple who has lost their baby is that we are by their side for whatever it takes, especially to listen. There is a phase of grief when the family needs to express their feelings and needs someone by their side to listen to them, therefore sometimes a simple hug and giving company is the best thing to do. We must not fall into the typical phrases such as: “you’ll have another one”, “you’re still young”, “nothing’s wrong”, “forget it”, “better now than not later” … We think these phrases are harmless but at the same time they do a lot of damage to that person who for months or years has been planning that pregnancy, and as much as we know that perhaps later she will have another child, the one who has just died was her son, and she loved him, for therefore he cannot pretend nothing had happened or forget it. On the contrary, we must help to talk about that baby and above all call him by his name.
And to the fathers and mothers … what advice do we give them to face such a death?
The first advice we give to families who can foresee the death of their baby (pregnancy termination, extreme premature birth) or in cases where there is a gestational death and there may be a few days or hours to prepare the welcome and farewell of the baby, is that they keep in mind that that moment will be unique, that they take into account what they want to remember about their son or daughter. We are part of a project called “The Box of Memories” and this project aims to facilitate this creation of memories. The La Caja de los memoria project arose from the experience of four mothers who said goodbye to our sons and daughters about a year ago.
With this box, which we give to hospitals, we propose to take family photos, wrap the baby in a lullaby and put on a hat, plant a plant from a seed that is inside the box, we add a candle as a symbol of light , and we also offer a small pot to put the umbilical cord. One of the most important elements is the lullaby and the hat so that this son or daughter is not wrapped and presented to the families with a cold and worn surgical size, without personality … but rather that they present themselves with this very special element. Families have a beautiful, tender and pleasant memory so that after a while they can reopen the memory box and the memory of their son or daughter is a memory seen with love and tenderness, putting away the pain of loss.
Each family can create their own memories and add them to the box or else
We recommend allocating a space in the house to create an altar and put the elements that represent your son or daughter for the family. Finally, we recommend talking about the baby normally, highlighting its existence and, above all, relying on other families who have also experienced a perinatal loss. It is for this reason that the GAM (Mutual Aid Groups) are created and it is precisely from where the idea of creating the project “The box of memories” arose.
Are there enough resources to accompany parents in this situation?
No, that’s why we have also seen ourselves doing this project. There are no firm and unanimous protocols in all hospitals. In many centers the nurses or midwives themselves are the ones who make some small memories taking part of their free time and even their money, but often they do not reach all families. They always do everything they can, especially so that parents do not leave with empty arms. It would be good to have legislation that could protect parents who have lost their child during pregnancy and could enroll him in the registry, in the family book, but this is not currently possible.
What should be improved in the health system to provide good care and monitoring of these cases?
The main improvement in the health system would be a revision of the protocols for the care of perinatal death, from first trimester losses to deaths in term births, through pregnancy interruptions or deaths of babies during the first days or hours of life. We know that there are hospitals that have a very elaborate grief protocol and work is being done so that families can start grief in a healthy way, with a team of psychologists or therapists who provide good support from minute zero, but there are other hospitals that do not They ensure this accompaniment, nor do they recommend making any kind of memory and when these families casually arrive at mutual aid groups, they arrive devastated.