Associative Campaign 2020

by Claudia Ravaldi

ASSOCIATED WITH CIAOLAPO! BECOME A PROMOTER OF PERINATAL CARE AND HEALTH.

Being part of the change will allow us to work intensively so that Italian culture opens up to respect for this type of mourning, recognizes it as such and welcomes, rather than repressing, the psychological and social needs of parents.

In 13 years we have done much more than we could imagine when on April 11th 2006, we started CiaoLapo.

THANKS TO THE CONTRIBUTION AND SUPPORT OF THE MEMBERS, HUNDREDS OF ITALIAN OPERATORS AND THOUSANDS OF PARENTS, EVERY YEAR, CAN RECEIVE THE INFORMATION AND SUPPORT THEY DESERVE.

Sign up for 2020

In our country, every year , one in six pregnancy results in the death of the expected baby: this happens more frequently in the first twenty weeks of pregnancy, but it can happen, and it also happens at the end of pregnancy or after childbirth.

In fact, in the first twenty-eight days after birth, often due to causes related to the serious prematurity of the newborn or the presence of fetal pathologies, hundreds of mothers witness the death of their newborn babies.

Overall, fifteen out of a hundred women each year face the loss of their expected child and with it, the overwhelming and tiring experience of perinatal bereavement.

We talk about abortion and perinatal death every time a desired pregnancy becomes complicated, due to maternal pathology or the managed child, until it stops.

Not all perinatal deaths have a known cause and unfortunately not all are preventable.

In the face of inexplicable situations, which represent beyond the 50% of first trimester miscarriages and about 20% of stillbirths , in other cases, if correctly framed and studied , it is possible to trace the chain of events that led to the death of the child: this is very important for families, also in view of a possible subsequent pregnancy.

In the face of the large number of couples who pass from waiting to mourning, our country continues to be not culturally prepared to face this event in an adequate and fully respectful way of the women, couples and families affected.

Knowledge of international guidelines on support and good practices in case of spontaneous abortion, therapeutic termination of pregnancy, stillbirth, perinatal death and accompanying birth of children with poor prognosis is poorly known and still not widespread even among children. Italian health workers.

Our guidelines actively promoted in Italy by CiaoLapo and its group of researchers, professionals and volunteer parents since 2008, through two targeted research projects (Memory Box Survey e CLASS ) are now known and applied in the hospitals that we have reached with patience and determination over the years.

The hospitals we have reached and with which an effective synergy has been created are only 25% of the total.

Much remains to be done to break the wall of indifference and bad information surrounding the issue of perinatal bereavement in our country and in particular in some Italian regions where, despite the efforts of individual operators and families, it has not been possible to find a sufficient motivation to change.

Since 2018 we have distributed free of charge the text “Assisting perinatal death” in 100 birth points and also online and we have started and promoted the research project CLASS, still in progress, which incorporates the main international guidelines (English NHS, RCOG, Canadian Pediatric Society, Perinatal Australian and New Zealand Society etc) trying to evaluate their knowledge and application in our country.

There are still too many hospitals without internal guidelines and guidelines relating to the management of perinatal bereavement and affected families.

Regarding early or late spontaneous abortion (first half of pregnancy), most of the available guidelines are completely ignored, with extremely serious psychological and psychosocial outcomes for the affected women.

The same can be said for thousands of women who choose to terminate their pregnancy due to a congenital defect in their baby, and for others who, on the contrary, often with great criticism from society, choose to carry the pregnancy to full term. a child with a terminal illness.

THE feedback from women, families and operators trained by us in recent years on bereavement assistance during pregnancy and after birth are very encouraging: with a few hours of basic training and with the support of the rich scientific literature and first aid material that we make available free of charge to hospitals and operators, It is possible to improve almost all aspects of care that are considered important by women and couples facing perinatal death.

Just want it.

We are in a country where they are little known perinatal rights: in Italy it is only thanks to our insistence and the determination of our 50 volunteers and associated families that we started talking about perinatal care , mourning and perinatal rights in the event of abortion, stillbirth and perinatal death in general; to date, to our knowledge, very few hospitals have developed a specific PDTA (diagnostic therapeutic care pathway) for all types of perinatal bereavement and in many hospitals there are no reference guidelines. When there is no in-depth reflection on such a complex issue as perinatal bereavement (i.e. from conception to the year of life), there is a risk of acting on impulse, of acting for a personal feeling, or of not act at all, as if this were a non-event, something that is not part of care. Something that others do, not the healers.

The copiously widespread ignorance and indifference around this issue in this last year have emerged forcefully on several occasions in the media, with respect to the right of burial (often denied, considered exorbitant, or proposed at exorbitant costs), to the right to birth in anonymity and / or non-recognition of the child with pathology (the case of Giovannino in Turin made manifest the widespread ignorance in our country with respect to the psychological aspects of an unfortunate fetal or neonatal diagnosis), with respect to the right to access a correct diagnosis prognosis and information regarding a specific medical problem (suspected abortion, fetal abnormality, inexplicable stillbirth, etc.).

Compared to the first years of associative life, today women can talk more openly, on social media and in newspapers, about their experiences: they still run the risk of running into some handful of disrespectful ignoramuses, but they have the comfort and certainty of having a belt protective of other women and also of some men who offer respectful and non-judgmental support by claiming loud and clear the right to give voice to their own experience and experience. Even when what has been lived for some should remain a taboo.

We have done a lot, but there is still a lot to do. Educating women and couples to know their rights , possible choices and options that have proved most useful for other parents is a challenge we face for the next ten years.

Making the basics of perinatal psychology, the anthropology of birth and mourning available to all, promoting a correct scientific dissemination that allows parents lost due to an unfortunate diagnosis to find their way and make the most appropriate choices for them.

Women, couples, families and some operators, especially young people struggling with their theses, with master’s degrees or with the first cases of perinatal death, today speak more openly about this difficult and complex experience and they make specific requests related to the improvement of assistance, to hospitals, regions, ministries that should be involved in the training of operators and in promoting the health of citizens. Many grandparents start contacting us to talk about their grief; many friends of the family and work colleagues have started to contact us to understand how to best behave and how to be useful. All this is very important and very encouraging, also thanks to the distribution of all our thematic flyers dedicated to grandparents, family and friends.

In the face of the growing interest in the general population and among health professionals remains to be addressed with some urgency , among many others, the problem of welfare disparity : the Italian regions and the various hospitals are still far from adopting homogeneous care pathways not only between one region and another, but also between provinces of the same region : women treated in hospitals a few kilometers away can receive very different treatments, depending on how companies are organized in relation to perinatal bereavement assistance.

This is very serious and harmful to the most basic human rights.

The areas of greatest disparity are:

1) the presence of adequately trained personnel on perinatal death assistance with relational / psychological ( counseling laws) and health skills;

2) the presence of protocols and guidelines on assistance in the event of perinatal death drawn up by the company together with health professionals and representatives of parents’ associations and correctly applied and verified (it is not enough that a protocol is written, it is necessary that it be applied );

3) the presence of care pathways defined from the zero time of diagnosis to the return of diagnostic investigations, in which operators and parents have access to the necessary information and know the procedures, times, and those responsible for the diagnosis and treatment process;

4) the presence of a hospital-territory network capable of offering support to couples, also from a psychological point of view.

IN ITALY THERE ARE ABOUT 560 BIRTH POINTS AND 120 NEONATAL INTENSIVE THERAPIES .

CiaoLapo has been working since 2006 to reach ALL birth points, ALL NICUs and ALL couples experiencing perinatal loss with its free information and first support material and to reach all health workers in the perinatal area with its educational kits. .

Being part of the change means helping us to ensure that birth centers and NICUs, if necessary, have free material on the medical, psychological and psychosocial aspects of perinatal bereavement for parents and families affected by perinatal bereavement (Kit Piccoli Principi ).

CiaoLapo has also developed an information kit for healthcare professionals that was enriched, in 2018, with the book ” Assisting perinatal death ” (KIT Perlae).

The “Little Prinicipi” kit and the Perlae kit are distributed free of charge to all hospitals and clinics that request them (40 new departments in 2019).

Being part of the change allows us to reach more and more operators of the different birth points and NICs with our material.

CiaoLapo also offers 20 free two-hour training seminars at birth points, NICUs and consultants who request them, aimed at healthcare professionals.

The goal of the kits and the meeting with our trained volunteers is twofold: to increase the knowledge and practical and emotional skills of the operators in supporting bereaved parents and to directly help the staff to manage the emotional and professional difficulties of this not easy experience .

“I wanted to tell you that having a lesson with her has helped me a lot, from the bottom of my heart, to relate to mothers who lose their babies” Martina, midwife

Being part of the change means filling an Italian gap that has existed for thirty years.

In 2006, there were no Italian guidelines on perinatal bereavement. When we started proposing (translated) guidelines from other countries, we were told that those guidelines were not “right” for our culture.

For this reason, for 13 years we have been studying the Italian population affected by perinatal loss and, thanks to the generosity of the families who contact us, we have recorded all the experiences of loss and assistance in order to draw up specific national guidelines, also in our country .

Being part of the change allows us to continue our studies and our research to collect so much data and so much information on assisted parents in Italy to provide the Italian institutions with everything they need to establish suitable care protocols in the birth centers and in the TIN.

Among our permanent objectives there are not only the mapping of birth points and TINs, research projects, online and face-to-face support for operators and bereaved parents: we also assist students who carry out their degree and master’s theses in this context, we subsidize numerous artistic works (photographic, cinematographic, literary in primis) and we promote the training of volunteers and professionals, from 2017 also remotely, through our new FAD platform (online distance learning).

We work with leading Italian and international experts in perinatal death so that all bereaved parents can access a post mortem diagnosis adequate to international standards, and a preconception diagnosis that carefully evaluates all possible risk factors before recommending a new pregnancy. (necessary aspect especially in case of polyabortivity, stillbirth and prematurity).

We actively deal with perinatal psychology:

bringing our knowledge on the psychology of pregnancy and psychotraumatology in the context of the so-called ” rainbow pregnancies “;

addressing the great and complex issue of infertility and Medically Assisted Procreation (MAP) associated with perinatal bereavement. One third of bereaved couples seeking support from the association have a history of infertility and MAP. In order to work better with these couples, we began to deepen the subject, bringing the collected testimonies and reflections on bereavement in MAP to all interested colleagues.

We have developed an important project ( Progetto Arcobaleno ), the only one of its kind in Italy, so that parents who face a subsequent pregnancy can be accompanied and supported in this new emotional roller coaster, reducing the stress of the couple and promoting the health of the unborn child.

Our books , for children and adults, are an important flagship of our permanent activities: in recent years, thanks to the partners, thousands of bereaved parents have received our self-help book on perinatal bereavement free of charge. Little Princes , and 700 couples received ours instead Memory Box , used in a small (but growing) number of Birth Points and Neonatal Intensive Care.

Being part of the change will allow us to work intensively so that Italian culture opens up to respect for this type of mourning, recognizes it as such and welcomes, rather than repressing, the psychological and social needs of parents.

In 13 years we have done much more than we could imagine when on April 11th 2006, we started CiaoLapo.

THANKS TO THE CONTRIBUTION AND SUPPORT OF THE MEMBERS, HUNDREDS OF ITALIAN OPERATORS AND THOUSANDS OF PARENTS, EVERY YEAR, CAN RECEIVE THE INFORMATION AND SUPPORT THEY DESERVE.

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