What is perinatal bereavement and how to overcome this tragedy?

According to the Department of Research, Studies, Evaluation and Statistics, the stillbirth rate (main component of perinatal mortality) in France is 10,2 per thousand births, against 10,6 per thousand in 2017. These figures count the number of children born without life after six months of pregnancy, but not those born alive and died during the first seven days of life, ie early neonatal mortality. These data, which are not being reduced quickly enough, make France one of the countries which suffers the most from perinatal mortality in the European Union.

Perinatal bereavement: The long road of bereaved parents

The news of the death of a child or of the serious illness that will lead to this fatal outcome is of course always a shock to parents. In a few moments, life changes, time stops definitively. Nothing will be like before. Whether it is a fetal death in utero or a medical termination of pregnancy (IMG), we are never prepared for such a tragedy. With pain, amazement, incomprehension mingles, then loneliness.

Often, those around them do not have the words, the families do not feel recognized in their pain and deplore the lack of support. Indeed, ” premature death remains a taboo topic», Confirms Dr Soubieux, child psychiatrist and psychoanalyst, specialized in perinatal bereavement. ” We consider it a non-event, that it is not worth talking about. The truth is, the death of a child is very scary because it is one of the unthinkable things. People do not want to identify themselves, they prefer to tell themselves that it does not exist. »

Definition: what is perinatal bereavement?

Perinatal bereavement follows the loss of a very small child, whether during pregnancy, before term, or during the seven days following birth. Perinatal mortality therefore includes stillbirth and early neonatal mortality.

Recognize the pain of parents: how to do and what to say to help a tummy or a papange?

Some parents feel the need to find a name that would better describe their situation after this tragedy. Terms parange, mamange and papange, neologisms formed with the words parent, mum, dad and angel, can then be used by people who have just lost their babies. These words are also widely used on social networks, where the people affected by this tragedy can, thanks to these keywords, find themselves and share their ways of overcoming their loss.

For those around you, it is important to keep in mind that the place occupied by an unborn baby is not the same for everyone. For some people, at 4 months of pregnancy, the fetus is already perceived as a real baby with whom a fantasy relationship is engaged. Others have not yet invested this child, they consider it as an abstract thing which they do not want to talk about and which they will also avoid naming. Nevertheless, in all situations, the appearance of death at the very place of life entails a collapse, unspeakable pain.

After the shock of the announcement and the denial that follows, comes the time of anger, the need to find someone responsible for what is happening. Guilt, feeling of failure, feeling of bottoming out, of plunging back into: it is normal to go through all its phases. And there is no one way to react, each and every one faces this ordeal according to their history, their experience. In this particular moment, in general, ” what couples need above all isto be recognized in what they experience, in their pain », Insists Dr Soubieux. ” Talk about their story relieves and helps reinvest life “, Continues the specialist.

Perinatal bereavement awareness day, October 15: get closer to psychologists, associations, support groups or forums

October 15 is the day dedicated to raising awareness of perinatal bereavement around the world. It may be the right time for parents or those around them to find an association, for example, which would communicate on this occasion, and could accompany and help overcome this trauma. It is indeed to associations dedicated to perinatal bereavement that many parents turn when they lose a child. These structures have multiplied over the past ten years. They offer support and listening, often with a generally very active forum.

Most of them direct parents to support groups, precious places where everyone can express their suffering freely and interact with other parents. The associations also want to raise awareness. It is also under their impetus that it was decreed that October 15 would be World Perinatal Bereavement Awareness Day. One of them, the Petite Emilie association, published on this occasion an information booklet on IMG and perinatal bereavement. This support, already used in many maternities and prenatal diagnostic centers, should join ultrasound centers because it is often there that we learn the terrible news.

To compensate for the lack of recognition of these couples bereaved by the loss of a child, the law allows since February 6, 2008 to declare a dead fetus to the civil registry, regardless of its weight and the duration of the pregnancy. If this development has caused an unprecedented disorder in the statistics of perinatal mortality, it has above all enabled parents to keep track of their dead child. Which is not nothing, observes Dr. Soubieux: “ We recognize the existence of their child, it is for them the proof that no one will ever forget what happened to them.

Training: the support of the medical team to accompany after the loss of a baby

On the professional side, of course there is still room for improvement. Helping parents overcome this traumatic event is not straightforward. Diplomas and specific training on perinatal bereavement were created to allow teams to listen to parents in this particular moment. But in reality, the support varies a lot from one service to another. Obviously, ” what we would like is for a trained person, psychologist or midwife, to be able to support the parents from the announcement of the IMG until leaving the maternity ward and why not afterwards », Emphasizes Guillaume Jeunot, member of the Petite Emilie association. But, in these often understaffed structures, this is not the case.

Team training is therefore essential even if we must not fall into another trap which would consist in imposing ready-made “behaviors”, because these could also have harmful consequences on the parents. This is the difficulty of this particular bereavement that is perinatal bereavement. ” No ideal attitude to recommend“, Estimates Dr. Soubieux,” if not to take into account the singularity of each situation and respect the rhythm of each parent.

Testimonials: they survived the loss of a child

Justine Lavogez, mother of Viktor, Florent, Ange et Céleste

“We are the happy parents of Viktor, 4 and a half years old, and Florent, almost 3 years old. Life has always (or almost) smiled on us, at least until Florent’s arrival. I always knew I was a born mom. And when Viktor was born in May 2011, I was the happiest woman. And the obvious: a second baby would come to expand the family quickly. Nature doing, I got pregnant very quickly, a few months before my marriage. Very happy news for me.

Everything went well until the birth. Florent, our second boy, arrived a month early. And even though he had the correct weight for the term, something was wrong. His eyes rolled back, he moved very sharply and at other times he was lifeless. He sucked badly, did not cry. It took 5 months for the diagnosis to be found. Florent hashyperglycinemia without ketosis, a serious genetic disease, orphan, which causes severe disability and for which there is very little research and no cure. There are less than 1 sick people in the world. We have created an association Les Amis de Florent since June 000 to support research and raise funds to help sick children.

One day we decided to have another child, the one who would rebalance our family, the little brother or sister with whom Viktor could one day play. But with each pregnancy, we have a one in four risk of having a baby with the same condition. And this baby, this 3rd little guy, was sick too. We chose to do not make him endure the disease. I gave birth at 4 and a half months, a very small baby of 16 cm, formed. Angel will remain in our hearts forever. Three months after this trying childbirth, I learn that a little being has settled down again. But a few weeks later, a phone call from the geneticist brings us down like never before. This little girl I’m carrying is sick, too, she again … The horror of restarting a difficult pregnancy termination. The difficulty of being able to gain the upper hand. Céleste was born in early October, in the same way as her brother.

I have experienced the worst. Being able to declare my babies born lifeless calmed me a bit, even though their name is not on the family record book. We got to see themSaying goodbye to them was important to us. We always feel a little guilty about having taken their lives. I keep in mind that I do not have the right to give up, for Viktor and for Florent. “

Isabelle, mother of Yaël, Ella and Thaïs

“The little girl I was expecting had trisomy 21. We didn’t find out until late because the nuchal translucency as well as the tri-test were normal. Growth retardation and malformation were found on the second trimester ultrasound. Then the verdict came with the amniocentesis. We have decided to keep this baby. And then one night, in the seventh month, I found her really calm. We went to the emergency room and when the midwife did the ultrasound I saw the tears in her eyes and she told us that our baby’s heart was no longer beating. I whispered, “Is she dead?” She replied in the affirmative. We collapsed.

We gave her a first name, Ella. We entered it in the family record book and we chose individual cremation. We felt very alone in our pain. Few people came for the ceremony, we received very few calls. We got these awkward sentences: “It’s better like that”, “It’s better now than later”, “It’s better that you didn’t know her”. I would have needed someone to talk to me about Ella, to ask me questions about her. This is what parents of babies who die in utero or very young are asking for: to have the right to cry for their children, to talk about them, in short. that perinatal bereavement be recognized. We later realized that people weren’t indifferent but just didn’t know what to do. I had to put things right to release the grudge and anger, to make peace. It’s never too late. “

Stéphanie, mother of Valentin, Alexandre and Julia

“I myself am the ‘after’ child. My mother lost a baby at the end of her pregnancy, just before I was born. I grew up with this story. So, when I got pregnant in my turn, after a course in assisted reproduction, I was a little anxious by the beginning, a period known to be at risk, and by the end. But the second trimester didn’t scare me! I lost my baby at five and a half months, on my vacation spot. I gave birth urgently, under general anesthesia. Tests showed that he had contracted an infection due to an imbalance in my flora. I went back to work, PMA treatments, and three months later I was pregnant again.

When the baby started to move, I stopped sleeping. I was afraid he would die in my sleep. The exams were good, no infection. But on the second echo, it was found that the collar was much too short. Panic on board. I was hospitalized, rimmed, bedridden. Nothing to do, at 26 weeks, labor began. At birth, Alexandre cried, I did not expect it. It’s a good souvenir. I was told “Well done, 1 kg at 26 weeks, he’s a beautiful baby!”. After four days, an infection started, then a week later he had a brain hemorrhage. I was as relieved when I was told it was over. We had lived ten days of intense love with this child, but it had to stop.

I took my maternity leave, I walked with people who did not know my history. When I was ready, I went back to work. And the treatments. It has become a struggle. I wanted a baby. Living. When a new pregnancy began, I took antibiotics, the cervix was circled. I was bedridden. I was told it was a little girl, it took a week to get used to it. And then I thought to myself that it would reset the counters to zero. Julia was born a month early. But she was fine. I tell myself that if her two brothers had lived, she wouldn’t be here. Just as I myself might not be here if my older brother hadn’t died. It is the child according to which carries us. “

Irene, mother of Sean, Will and Olivier

“The next day, I called the association Naître et Vivre. I needed to hear from someone who had survived this. A volunteer came to the house. It was essential for me to be physically facing a person who had been through the same drama and who could assure me that yes, life could go on. It happened on May 20, Oliver was 110 days old, he was a healthy baby, who was already holding his head well. He was staying with his maternal assistant. We arrived at the same time as the firefighters. They tried to resuscitate him for 40 minutes. The nanny was in shock and it was difficult to understand what had happened. She had found him in his bed on his stomach during his nap while he was still lying on his back, we knew the rules of prevention.

I am well aware that we may never know why he did not have the reflex to clear his head. Oliver’s death is not a taboo with us. When it happened, our eldest twins of 12 came to join us at the hospital. They wished to see their little brother, who was brought to them dressed, well wrapped up. I did not hide my pain. One immediately cried a lot, the other was more distant, the next day he was joking. He said to me: “I don’t feel anything, that means I didn’t like him”. I had to explain to him that mourning was unique to everyone. When one of them asks me: “Are you ok mom?” I’m not lying. I answer: “Listen, today I miss him”. “