They are called the "paranges". As they prepared to experience immeasurable happiness welcoming their baby, it passed away before or just after it was born. Emptiness, pain, grief… These parents are suddenly faced with perinatal bereavement, violently overwhelmed by emotions that will often be difficult to manage on their own. Nothing prepares them for this but many solutions exist to support them.
Perinatal death * refers to the death of a baby "around" its birth, either in utero, weeks before the due date or at term, or a few days after birth. Each year in France, 7,000 families are confronted with it and must then overcome a test that no parent imagines one day: that of the loss of their child and of mourning. “Everyone experiences their grief in their own way and there are as many situations as there are families,” says Sarah Amiel, psychologist. Fortunately, these are not alone.
Why ?
Perinatal death can occur following too premature childbirth, a Medical Interruption of Pregnancy (IMG), prescribed because the health of the mother is at stake or the viability of the fetus is in question, the sudden stop of the patient's heart. fetus, a complication during pregnancy (we speak of fetal death in utero), problems during childbirth or even unexpected infant death (formerly sudden infant death syndrome), for which science is still struggling today to find explanations. The search for the cause behind the loss of their baby will be very present and important in the grieving process for parents, especially at the beginning, when faced with the unthinkable, we try to cling to the concrete.
An autopsy of the baby and the placenta may be offered in order to try to diagnose the cause of death but also to provide information to prevent certain risks in the event of a future pregnancy. It can only be done with the consent of the parents. Unfortunately, while certain medical conditions can be identified, in a very large part of the cases there is no explanation. "At this current stage of knowledge, medicine does not have the means to provide one and to elucidate these perinatal deaths", explains Sarah Amiel. This lack of cause can quickly give way to fantasies and guilt.
The feeling of guilt
Known stage of mourning, guilt, particularly of the mother, is particularly strong in cases of perinatal death. It echoes motherhood directly and deeply affects her ability to become a mother and pass on life, a real raison d'être for some women. She believes that she was not strong enough to carry her baby, that she must have made a mistake during the pregnancy and that she precipitated the death of her own child or that her body betrayed her. "She will rethink the slightest gesture made during her pregnancy, this glass of champagne that she may have drunk at Christmas, this cigarette she smoked, this fatigue that she ignored … These imaginary scenarios in the search for the cause seems anecdotal to us and yet they take on a very important dimension in women, ”describes Sarah Amiel.
However, guilt is not necessarily a bad thing in the grieving process. “By seeking to understand, by feeling responsible, she will also try to repair. The guilt will allow her to be an actress and not to endure the situation as something in which she is totally devoid of anything. The woman takes back possession of her body, of her history. Up to a certain point, this guilt is useful in regaining control of the fate that seems to have befallen her. This feeling of responsibility, even if she is not guilty of anything, is a vital impetus that will give her the strength to act. "
The importance of being able to formalize the existence of the child
For a long time and until recently, the baby who died, especially before term, had no social status. Dead before he lived, he did not exist in the eyes of the administration and the law. He did exist, however, in the hearts of his parents and was at the center of all their attentions, all their projects and decisions for months, already having a place in their family under construction. How to ignore it? How to act "as if nothing has happened"?
Fortunately, today, thanks in particular to parents who are victims of perinatal mourning and to the struggle of associations, things have changed and the child now has civil recognition. His birth, which moreover gives rise to childbirth, whether by vaginal or caesarean section, is recorded in the civil birth registry. Parents are invited to give him a first name, to see their child and take him in their arms after a toilet and preparation by the nursing staff. They can even request photographs and the establishment of a birth bracelet. If the couple already has a family record book, their baby will be officially registered there. In France, recognition of a child born without life is even possible from 15 weeks old and a birth certificate can be issued.
It is also possible to organize a funeral, an important separation ritual in mourning, for the child. The funeral is even compulsory if he died after birth. Hospital staff can guide parents through the early stages of the process. Depending on the baby's age and stage of pregnancy, the couple will have 3 to 10 days to claim their child's body and hold a ceremony. If they wish, the hospital can take care of it. He will then be buried anonymously during a collective cremation and his ashes will be scattered in the garden of memories of the cemetery. Some have a place reserved for the memory of missing babies called square of angels. It also happens that maternity hospitals organize farewell ceremonies, respecting the cultures and religions of the family, always according to their wishes.
Certain administrative procedures can be very cumbersome for distraught parents and even seem futile, but they are important in the grieving process because they also make it possible to establish a reality of the event, whether for the family but also for relatives or friends. even employers.
Talking about your bereavement to professionals
Shock, pain and sorrow can leave little room for talking, especially at the beginning, whether with those around you but also with your own half or even your other children when there are any. Yet it is essential. Being able to put words to this drama, or to express in other ways your distress, incomprehension and all the strong emotions that will arise as a result of this loss, allows you to better understand and manage your feelings.
The team of healthcare professionals who have accompanied parents throughout their hospitalization is the first to intervene and provide them with help. Often multidisciplinary, including midwives, obstetrician-gynecologists and psychologists, and trained in perinatal bereavement, she will know how to guide them and provide them, as much as possible, with answers but above all with listening. The arrival of a psychologist is systematically proposed, from the stage of the announcement of the death by the gynecologist, and parents can choose to continue this follow-up through individualized psychological support or request that other professionals are referred to them. "Even today, by society, by those around them, perinatal death remains a very trivial event. Parents quickly feel misunderstood, they who themselves seek to understand. The psychologists intervene to offer the couple a listening space, and allow them to have a place where they will not hear that it is not so bad. The grieving process will be explained to them because perinatal grief, although the child has not lived, is indeed full-blown grief. "
When this option is chosen, it is recommended to go as a couple. Despite similar suffering, a mother and a father will not necessarily have the same psychic mechanisms when faced with the loss of their child. First, because they will not have experienced the same sensations. In women it is both psychic and bodily, in men it is uniquely psychic. This one can quickly feel helpless, spectator of the suffering of the mother. Yet both parents are going through the same ordeal and they both have to mourn. “The misunderstanding is shared. The search for the cause of death exists in both parents, specifies Sarah Amiel. Unfortunately, the absence of a cause sometimes risks giving way to fantasy, to a latent reproach on the part of the father, especially when a more or less benevolent entourage will also seek explanations in the actions of the mother, nourishing this feeling. It is therefore important that they talk about it together, and do not lose sight of each other in distress.
Likewise, when the family includes other children, their care can be beneficial. The elder (s) will also experience the death of the baby in their own way, in addition to witnessing the grief experienced by their parents, without always being able to understand it.
Never alone: The role of associations and support groups
While it is strongly recommended not to face bereavement alone, support can also be provided through associations that have their own network of psychologists as well as documentation on bereavement and how to manage it. It can also be done through forums and other talk groups dedicated to perinatal bereavement. There are many of them across France and on the web. They create a warm and benevolent space for free speech for parents and allow families to come into contact with perinatal death. Everyone can testify, ask questions, or just listen, read, and support. Very strong bonds can even emerge from these encounters made in the face of adversity.
Among the associations:
- AGAPA has around twenty branches throughout the territory and offers listening and individual or collective support via coffee-meetings and support groups to anyone who has suffered the loss of a baby before or after birth, whatever the cause.
- The Spama association, present throughout France, which provides parents with a crisis line (07 87 85 37 81) as well as a box to collect their baby's memories and a book to read with the family and activity books intended to support the brothers and sisters.
- The Naître et Vivre Federation, present throughout France, supports prevention and medical research on perinatal and infant death and supports parents in grieving situations with a Listening Line (01 47 23 05 08).
Many other organizations exist at the local level or even within maternities and hospitals, such as the support group for mothers who have experienced fetal death in utero proposed by Doctor Marie-José Soubieux, child psychiatrist and psychoanalyst at the Perinatal Psychopathology Center Boulevard Brune – IPP-CH Sainte Anne, and co-author of the book The Empty Cradle (Erès, 2008) on perinatal bereavement.
On the internet, other independent association forums as well as groups created on social networks by paranges also provide a space for parents and families to talk and share.
The entourage in the face of perinatal bereavement
Because it is difficult for friends and loved ones to fully understand the tragedy and distress of losing a child they have never known, finding the words to accompany and support parents can quickly become a challenge. test. “This is such an inconceivable drama that it is actually difficult for the whole family sphere and generates a lot of anguish. And in trying to reassure, we will often trivialize. Easy, post-focused words forgetting the grieving process and the missing baby's place in their hearts will spring to mind. "You will have more", "We must turn the page" … So much advice that you think is wise but is the opposite of what parents need to hear.
Some people are quite aware of this and the fear of awkwardness is then replaced by silence. Beyond words, support can take many forms and be just as beneficial: a small gesture, special attention, a simple demonstration of compassion, an invitation to an activity or even a practical helping hand (helping with a administrative, moving objects associated with the birth of the child, accompanying the mother and / or the father to a meeting), etc.
Psychological help in the context of perinatal bereavement is not exclusively reserved for paranges. It may well be for those around them who want to understand the pain they are going through. Just as learning about this delicate subject through the many books dedicated to it or even contacting a support association is obviously a process open to everyone.
Perinatal bereavement, the ordeal of a lifetime
“The pain subsides over time. It takes months, years. A life. In fact, the pain is progressing. She transforms. It transforms us. But the memory of our child will always remain in our hearts ”, confided aufeminin Youlia, author of the book. À Vif, Diary of a mother unlike any other (ed. Cerf), the mother of a little Simon whose heart stopped beating a few days before his term and a mother since Joseph.
You don't get over grief, whatever it is. We learn to live with it and continue to build ourselves. In the case of perinatal bereavement, a parent never forgets their missing child and this loss keeps an echo throughout his life. "There is never an innocent pregnancy again after this," Sarah Amiel concludes. Whether it is the following ones for the mother or those which will occur around her or even those of her own children. But while they will sometimes rekindle an anxiety, they will also awaken the hope and the strength that made life possible to go on, differently, but to continue despite everything.
Despite all the help provided by health professionals and advances in the law, much remains to be done to recognize and address perinatal death as a trauma for parents. A world day of awareness of perinatal bereavement to open the reflection around this terrible ordeal and support the families who suffer from it was thus established on October 15. It has its own symbol: a blue and pink ribbon.
*As defined by the World Health Organization (WHO), perinatal death refers to the deaths of the child between 22 weeks of amenorrhea and the first 7 days of the newborn's life.
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