Perinatal bereavement in infertility

by Claudia Ravaldi

Perinatal bereavement is always an emotionally complex topic; when it concerns a couple who has a history of infertility and related treatments behind them, perinatal bereavement can become very difficult to deal with and elaborate: different griefs come together in the biography of the couple, making the process of elaboration very burdensome and favoring the onset of complicated bereavement.

There is too much mourning where there should be expectation, and birth, in my life “: these are the words of a patient with a long history of infertility and a recent perinatal bereavement during our first sessions: “There is too much pain, which comes over a cumbersome pain (infertility) just when we thought we could dismiss all suffering and start being “happy like the others”, like those who don’t know, have no idea, lucky them. Instead for us, still pain“.

Reflecting on perinatal loss after a diagnosis of infertility and an assisted procreation process is urgent, and cannot be postponed, since only one in four infertile women undergoing MAP gives birth to a healthy baby, according to the latest ISTAT data.

This means that the other three women / couples are likely to be left with no live children.

This means that at least two of them will lose one or more children (during the different gestational ages, especially in the embryonic and fetal phase) during the various attempts.

Infertility has always been a taboo in our culture. The flare-up of ART techniques has partially reduced the “perception” of the taboo: now it always seems possible to have a child, even at a very late age, just “try”. If before infertility it was not spoken of as a taboo rooted in our culture, now it is not spoken of infertility as a ” non-problem “: “we have found solutions, thanks to the wonders of the technique, and we can always “fix” with an adoption, and also do good to a child in need, in case something goes wrong. We have to be optimistic, and not bandage your head too much! “.

The result is that today, 2017, infertile women / couples do not find space to listen, to narrate, to discuss, to reflect aloud on the effects of infertility on their life, on their identity, on themselves. With often devastating consequences on their psychic, physical and biopsychosocial well-being.

These women and their mourning should be able to be thought of with attention and respect, by the carers, but not only. Their tortuous paths, sometimes dramatic, sometimes endless, require support along the way, but also a deeper and deeper “work” on themselves and their identity, of women, of mothers looking for children who they do not arrive, that they are gone, that (perhaps) they will not arrive (anymore).

Peri-natal mourning, that is around procreation, pregnancy, birth that takes place within the mourning of infertility is a frightening matryoshka of pains.

Where the need for good care is enormous and despair is high, it is necessary that the carers know what space to occupy, know how to be next to and become a container for the anguish of death and the tiring transformations that all mourning, and even more so, require. .

The two griefs do not necessarily converge: often the grief linked to infertility and the failure of ART techniques is so furious as to transiently “obscure” the loss of the embryo / fetus / newborn. Often the urgency of family members, doctors, friends, combined with the media urgency of the “child at all costs”, have the better of the loss of the child managed, generated and then passed away. In these mourning everyone agrees on the ” absence of time“, on the need to” hurry up “: in this framework, the mourning of the child procreated and then lost, often cannot have the right time. The pain of perinatal loss is a pain of beta negative, or of blood that announces death , of weak or absent beats, of fetal or mother diseases. The pain of perinatal loss has a whole other series of dynamics than the pain related to infertility, and goes to insist on some common themes (guilt, inability, impotence). Mourning in mourning becomes a hungry monster, which feeds on the fear of not succeeding, of the body oppressed by techniques, of those embodied fantasies, briefly and in any case forever, which do not seem to deserve home, so much there is a strong urge to “move forward”.

To move on.

Go where?

Anyone who has been through this firsthand knows how necessary it is to receive adequate help for each part of this double bereavement and how important it is to be able to receive help on multiple levels: medical professional, psychological professional, obstetric professional, social and family.

Anyone who has gone through years of bereavement related to an infertility diagnosis and then finds themselves dealing with the loss of one or more children (as we shall see, regardless of the gestational age of the loss or the causes) knows how much this double bereavement can disintegrate. their identity as an individual, as a couple and as a parent.

“I sow love and be born dead ” a patient with a long and painful history of infertility and repeated losses screamed at me one afternoon, before telling me the negative result of her ‘ betas ‘.

The ” second bereavement ” deserves special attention.

The couples of ” almost parents ” as the female magazines call them, who lose their children – embryo or child – child or child – newborn , are like Persephone on the threshold of spring forced by a whim of Hades to go underground for another six months .

Couples remain astonished in a limbo of exams, tests, researches, words, paths, drugs. In this limbo, a cure is needed.

Mourning over mourning annihilates the greatest hopes, because it cancels the future when it seemed to be a little more present, a little more possible, a little less dream.

A little more reality.

The parents I met over the years of working with CiaoLapo know this well.

I call them, asking their permission, parents, almost immediately, without any hesitation.

Most of them, hearing themselves called parents, and being asked to account for the losses of their children as such, relax in their chairs and glance between incredulous and grateful.

It may not be so intuitive, but in the minds of women and couples struggling with infertility first and then with attempts to father a child, there is already ample room for parenting and a deep desire. If we associate these elements with the psychic, physical, moral and material commitment to conceive a child, the cure for this to happen and the weeks spent waiting for the child to arrive, and then stay, here we are faced with couples who act real parental care, with the mind no longer and not just “as a couple”, but as an “expectant couple”. As a parental couple, who as a dyad has prepared the space to become a triad and dreams of that child as he has never dreamed of anything else.

So can one be a ” childless ” parent? Can one feel like a parent investing a large chunk of one’s life in this pro-creative enterprise, even if the children haven’t arrived and won’t arrive, or have they arrived but haven’t stayed? In the Anglo-Saxon world, for some years now, support groups for the so-called “stillmothers” have been widespread: mothers who have lost their children during pregnancy or after birth and who for one reason or another do not have their children next to them. alive. The stillmothers break a very widespread taboo, that of the silence around couples without “visible” children, and another even more widespread taboo: the silence about the ” unborn ” and “stillborn”, which everyone would like to slip into an eternal oblivion. Everyone, except the vast majority of those who have lived the experience firsthand and know in their hearts what it means to face the path of waiting and loss.

Treating perinatal bereavement following infertility bereavement forces caregivers, family members, and friends to a far-reaching emotional strain. Even if our culture is poor in shared tools to address these complex and painful issues, even if there are few studies dedicated to the support of infertile couples and infertile couples affected by bereavement (“Ma spontaneous abortion is not a bereavement !!! “, unfortunately, many carers who treat infertile couples still think), even if the taboo is still strong and infertile couples are not followed up much, especially after a loss, something is slowly changing in our country too. After ten years of struggles with the press and with operators, for example, thanks to the parents and operators of CiaoLapo we began to talk about early abortion, clearly defining it as a mourning event (as already codified in other countries and in numerous studies), and finally the suffering after the loss of an embryo or fetus begins to be considered appropriate (and not bizarre).

In a few years, even in our country we will perhaps be able to allow infertile couples who suffer perinatal bereavement to define themselves as bereaved parents, if they so wish, and to be able to process the loss of their children. Children that they, however, unique among all parents, were able to see right away, from the very beginning of their life path.

First outside, and then inside, in a reversal of perspectives that should make us reflect a lot on the parenting process and on how potentially counterproductive it is to diminish its meaning and scope, reducing everything to an “attempt”.

Couples know what they are doing and why. The project is clear: they want a child, at the cost of very painful physical, psychological and emotional paths. When it comes to the implant, couples know that this is the beginning of a baby. Of their child, the one for which they put themselves on the line by revolutionizing everything. It is quite clear that the stakes are very high, that parenthood is already on the launching pad and that “loss” cannot and should not be diminished or trivialized. Even in the event that the parents, distressed by the possibility of remaining “childless”, force themselves to live this event as a routine and propose to proceed, zealous. It would be worthwhile to offer a space to redefine this loss, so that the event does not turn into a frozen trauma, an unresolved bereavement, destined to recur with a new pregnancy or a new parenting.

The loss of an expected child during pregnancy or after birth is an event that scholars dealing with perinatal psychology and traumatology have long considered traumatic bereavement. For some years together with other authors we have started talking about “perinatal bereavement” to define and describe this type of event, regardless of the gestational period in which it occurs, noting how the effects on people affected by peri-natal losses are also very different between they are peculiar with respect to other griefs and largely overlapping each other.

Some physical characteristics change, some relational modalities with the lost child change, but the characteristics of bereavement, widely explored by various authors, do not change.

Since the seventies of the last century, many studies have addressed this issue in a multidisciplinary and cross-cultural way, underlining how the typical characteristics of peri-natal loss (around birth, therefore in an extended sense throughout pregnancy and after childbirth) overlap to those of other sudden deaths, and have a similar course.

Perinatal bereavement is a traumatic bereavement because it occurs in a sudden, unexpected and violent way: it is connected to the loss of a loved one and is associated with peculiar characteristics, of expression and course.

The loss of a child during pregnancy or after birth is a real traumatic bereavement, and as such it should be framed and addressed. Even after a process of medically assisted procreation, the loss of an embryo or a fetus is perinatal, traumatic and painful, and cannot be classified as “expected risk”.

After a perinatal loss, the couple experiences emotions, feelings and thoughts typical of the post traumatic state, shock and grief. This is also found immediately after receiving a poor diagnosis. The diagnosis of infertility falls within this sphere, and is associated with a post-traumatic state. After the diagnosis of infertility, after the path taken to be able to procreate, the expected child dies at a certain point along the path. Two traumas, two griefs.

It is also necessary to consider that the intrinsic characteristics of perinatal mourning (the loss of a “love object” not yet fully known, often never met in life) and its existential peculiarity (the unnatural death of the child, which precedes the death of the parent) mean that this event in itself has a high risk of turning into complicated bereavement.

By complicated mourning we mean a mourning that freezes at a certain point in the process: the physiological and tiring process is blocked, and the mourning remains unchanged over time. When mourning freezes, afflicted people try to return to a seemingly normal life, often succeeding, putting mourning as “aside,” until life itself, in its unfolding, or other events bring the mourning back to the surface, forcing the painful to take charge of his elaboration again, starting almost all over again.

Grief freezing isn’t the only way a physiological grief can get complicated.

There is in fact another, fearful, complication, the onset of a mental or psychophysical disorder a few months after bereavement. The risk of complications after a peri-natal bereavement is unfortunately very high, because even today many women and many couples are left without any type of post-traumatic support.

If bereavement is not adequately addressed, anxiety and depressive disorders can be diagnosed in one third of cases.

Furthermore, the postpartum depression rate is double that of the general population.

Losing a desired and expected child, therefore, regardless of the causes and proximity to childbirth, is an event that has serious and profound repercussions in the biography of the woman and the couple, because it interrupts a planning thread (the arrival of a new family member) and relational (the arrival of that specific child, that, and not another, with whom the parents establish a unique and irreplaceable relationship).

This bereavement therefore has specific characteristics compared to other types of bereavement (above all, that of occurring very often in the body of the pregnant woman, or following acute and unpredictable pathologies), also because it occurs in a delicate moment of transition and transformation of the woman. and of the couple, which is the pregnancy.

Some authors also argue that perinatal mourning is particularly difficult to process in the first half of pregnancy, that is, in the absence of a (shared) time, of a space (the growing belly) of reciprocity (the kicking of the unborn child). The absence of sensory “footprints” of the lost child, the absence of sufficient time to be able to represent him and to be able to redefine the boundaries as “other-than-self”, his arrival in silence and his rapid departure in and through the mother’s body are considered elements of deep stress for the woman and for the partner: the child remains dreamed, barely sketched in the flesh, suspended forever.

Helping the couple to take leave of this baby, and her pregnancy, would therefore seem a central aspect to preserve their health and activate their resilience: however, in our country, the loss of the first half of pregnancy is still a neglected topic, and often trivialized as “things that happen”.

Much has been written on the psychology of infertility, especially in relation to the zero moment, that of diagnosis. On what happens next, on the succession of actions and attempts to repair, cure and overcome the problem, very few write, rarely do we go beyond a generic indication of “psychological support”.

Very rare are the contributions, studies and texts that address the event, far from rare, of “mourning in mourning”.

On this horrifying and distressing subject, the scientific literature is extremely poor in content. This means that operators, faced with the failure of medically assisted procreation and the loss of the embryo, fetus or newborn, are not sufficiently trained to contain the anguish that arises from a series of composite and complex mourning, often unsolved.

This means that couples are unlikely to receive adequate support to face, and possibly resolve, the unspeakable grief, the one that comes after the so-called ” precious pregnancies “: if I cannot represent an event, which remains confined to the unspeakable, I will hardly be able to help those who he is struck by it to make it speakable, and therefore processable.

The negating silence, the urge to try again, when possible, or to adopt, if the available attempts are over, is all that is offered to many couples, who then come to us, to CiaoLapo, harassed by decennial deaths and yet intact.

For the past ten years I have been dealing with women, couples and families affected by prenatal and perinatal bereavement: I was able to listen to all kinds of stories in the therapy room.

My room, the real one and the virtual one represented by the facilitated self-help forum on the CiaoLapo website have offered a space to many couples affected by one or more perinatal bereavement after a diagnosis of infertility. Often after years of treatment.

Couples rendered mute by the mass of mourning stratified over time on their shoulders.

Suffering couples, often abandoned in their paths in search of their child. Often tacitly pitied, before, during and after.

In a recent narrative workshop with women and operators on the subject of infertility, many significant words emerged, in the plots of many different stories. I am a free voice and witness. If welcomed, if you listen, they can be cured. The space to say it, at times, is the only real cure possible.

Insights

  • Ravaldi C., et al. Psychological aspects of intrauterine death. Research, experiences and intervention protocols. Psicobiettivo, 2009 issue 3
  • Ravaldi C., Small Principles. Losing a baby in pregnancy or after delivery. Editorial Graphic Workshop, 2014
  • Ravaldi C., Vannacci A., Psychological implications in perinatal death in pregnancy and psychopathological contexts from theory to intervention tools by PL Righetti, Franco Angeli Editore, 2010
  • Ravaldi C., Death in-waiting, assistance and psychological support in mourning during pregnancy and after childbirth Ipertesto Edizioni, 2012
  • Ravaldi C., et al., Attending perinatal death in Italy Toscana Medica July-August 2013
  • Ravaldi C. The broken dream facing perinatal bereavement a guide from parent to parent, Ipertesto Edizioni, 2013
  • Ravaldi C., Vannacci A., Perinatal death: psychological aspects of mourning and intervention tools in Birth and Mourning Experimental journal of freniatria, 3 2014
  • Ravaldi C., When the wait is forever: parents affected by perinatal bereavement in Pain on the threshold of life by Aite Lucia, Bollati Boringhieri 2017.

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