What can be done and what is important to know after the diagnosis of perinatal death, until discharge.
In this article, we describe the main useful information for women and couples who have just lost a baby during pregnancy or after birth. These indications are always valid: even in the course of a Pandemic, as stated by the World Health Organization , even in the event of positive Covid-19, even in the case of other emergencies.
Here you will find some information on perinatal bereavement and some information on what is important to know about hospitalization, hospitalization and discharge .
We know that when we are told the death of the baby we have been expecting it becomes difficult, confusing and painful.
The information contained in this article is a simple summary of thousands of experiences of other parents like you, and of dozens of studies we have carried out over the years, together with parents, doctors, psychologists and midwives.
The different points that we present to you were useful, important and significant for most of the parents of our association (about three thousand couples); the same things are important and significant in other countries of the world too, because perinatal bereavement is a complex but ubiquitous experience. What we are talking about here is a common experience for millions of women and men around the world.
It is very important that you can calmly decide what is important and right for you in this experience.
It serves to build good memories in the midst of the storm of mourning and serves to have fewer regrets in the future.
The important thing for us is that you feel free / free to decide what is best for you, even if “what is best” for you is different from the experience of others.
There is no absolute right or wrong way to deal with everything that comes after being diagnosed with abortion or perinatal death – there is the best possible way for you. It is for this purpose that we have written this article.
Try not to be (too) afraid. Fear in these moments conditions us strongly and suggests ways that do not always correspond to what is important to us. Talk to people you trust. With hospital staff, if they are trustworthy and empathetic.
IMPORTANT: Each step on this list is lawful and legal. It can be requested and carried out in every hospital: it would be advisable for you to be able to ask for clarification and support from the staff who assist you.
In case of need, contact us through the toll-free number or at primosost[email protected]: one of our operators will be able to help you.
You can print a copy of this page and take it to the hospital for further clarification from the healthcare professionals or let us contact you in case of need.
You can also read about the rights of women and couples affected by perinatal bereavement in this section of the blog
Diagnosis of stillbirth or perinatal death
The death of our children is a dramatic and difficult event to face: in a few moments everything changes, and we find ourselves forced to make many unexpected and painful decisions.
As soon as they told you the news, a thousand emotions could have crossed your mind: disbelief, confusion, fear, anger, pain, both physical and psychological (many mothers say they felt like a rock crushing their chest, or like a knife in the heart. ), rejection of reality (it is not possible, you are wrong).
Many parents feel guilty towards the child: you may feel that you have not been able to protect him, that you did not notice what was happening in time, and / or that you made some mistake that caused his death.
All of these emotions, or even the total inability to feel anything beyond a thousand because they are unanswered, are a normal part of the psychological trauma related to perinatal bereavement.
It is very important to recognize these emotions as part of the journey, because despite the great pain there are many important things to decide, to know, to discuss and to do when a child dies: every parent should be able to make all the necessary decisions in this difficult moment.
After the diagnosis
If you have been diagnosed with your baby’s death, at any gestational time, or after birth, and you are lonely (sometimes bad news is given to dads in the absence of mum), ask immediately to be able to call someone who can give you. comfort in such a difficult time. Whether it is a relative or a friend, it does not matter, the essential thing is that you parents are not left alone to face this difficult moment.
If you have gone to the hospital for a routine check-up and have brought your other children with you, it is possible to arrange with the staff to go home (in the absence of acute and serious situations, such as placental abruption or infection , or preeclampsia), take the children to a safe place, and perhaps take the pregnancy chart and all the necessary information with you.
In the absence of emergencies or other situations of need , which can be assessed with a blood sample, an ultrasound and a visit, you parents can decide to spend the night at home, if you wish, and go to the hospital the following morning.
You may also want to decide to give birth in a different hospital than where you were diagnosed or in the maternity home, if that is where you have been followed and there are no contraindications.
Take the time to consider what is best for you.
It is necessary to help those who have already left this life to be born
When the baby dies before birth and in the absence of acute pathologies that compromise the mother’s health (placental abruption, gestosis), parents and staff can decide the best way to plan the baby’s birth. An important reflection: for a woman who is dealing with the loss of her first baby and has no other experience of vaginal birth, or for a woman with a previous traumatic birth, the idea of a vaginal birth can be very frightening. , which is the safest indication for this type of situation, when there are no urgencies mentioned above.
The competent midwife in these situations is a precious and indispensable figure , because she can help you find the confidence, determination and strength you have, even if you think not.
The ward room
For administrative reasons and to be able to be followed by midwives, who are the professionals who assist pregnant women, at childbirth and in the postnatal period, including us mothers with perinatal bereavement, mothers are almost always hospitalized in the obstetrics ward; in some cases she is admitted to gynecology depending on the availability of the hospital. Being hospitalized in obstetrics or gynecology has advantages and disadvantages . When the hospital does not have a single room in a secluded part of the ward, a difficulty can be related to the presence of other mothers with their newborns. Immediate contact with life can be very distressing for some moms who are expecting to deliver their lifeless baby. It would be advisable to find the best possible solution to meet this problem (for example choose a single and sheltered room in the ward). If it is not possible to leave obstetrics, it is always advisable to have a room with few beds, and it is advisable for the ward to take action to find the most sheltered and protected bed in the ward. Having good obstetric care is very important and could balance the difficulty of sharing the same space with other mothers.
The expected hospital stay is usually one and a half days – two for normal deliveries, three – four days after a cesarean section, in the absence of complications.
Having an adequate space for your needs is very important.
You can ask and obtain to have someone stay with the mother, if the mother wishes, for the entire duration of the hospital stay.
In some hospitals they arrange a room in adjacent wards, where available. Talk to your midwife and doctor to figure out what’s best for you.
If the baby died in the first trimester of pregnancy, parents and doctors may decide to proceed with drug therapy, to wait a few days to try to avoid the curettage procedure, or to proceed to hospitalization for curettage: discuss with the gynecologists and obstetricians what is best for you, both physically and psychologically, before making a very important decision for your psychological and physical well-being.
If the baby has died from the sixteenth week of pregnancy onwards, spontaneous birth is usually induced, as indicated by all the national and international guidelines on the appropriateness of care.
Cesarean delivery is a surgical intervention with specific indications and with important consequences on the physical level . In the case of stillbirth from the sixteenth week of pregnancy onwards, the indication is that of vaginal delivery.
The delivery of a dead child seems like a cruel joke, and is a critical decision to face for many parents.
However, compared to the caesarean section which is necessary in some specific emergency situations, natural childbirth has better guarantees for the health of the mother, allows a better psychophysical recovery, and, through the production of specific hormones, allows a greater reaction of “detachment” from the pregnancy itself (as if it ideally closed the circle of that pregnancy, in a way as physiological as possible).
I thought I would never make it. Instead, it was a beautiful experience, a gift I gave to my little girl and she gave me. I felt deeply connected to her.
You can decide the timing and methods of delivery by talking to the doctors and midwives, in order to determine what is best for you.
For the mother, especially if struggling with the first pregnancy and therefore with the first birth, it is very important to spend the hours of this labor with a trusted person next to you (husband, mother, sister, friend), and with trained and competent midwives. at the birth of a dead child and with respect to promoting the physiology of childbirth.
I know it doesn’t seem true, but you can face this poignant and precious experience together in the best possible way.
Most mothers report that the choice of natural birth proved to be successful because it allowed them to “do something concrete”, “a gesture of a mother”, for their children, and report a great satisfaction in having been present. and vigilant during all phases.
The Italian guidelines on stillbirth establish the indication for analgesia during labor and delivery, so you can ask for epidural analgesia if you wish.
Keep in mind that the pain of the child’s death very often results in physical pain, and some women have felt deep, dull pain despite the epidural. Also keep in mind that there are many non-pharmacological ways to manage the pain of childbirth that midwives are often very familiar with.
In any case, also based on your personal history of pregnancies and births, you can choose what is best for you.
You may feel very anxious and very frightened about this experience so far from what was expected and dreamed: they could offer you tranquilizers, especially after childbirth, which are contraindicated both in the post-traumatic phase and in bereavement.
Also discuss it thoroughly in relation to how you feel: it is normal to feel confused / desperate / fearful / sad, and living these moments in full mindfulness and with the support of your loved ones and staff can be a great opportunity for your grieving process. .
Sedation, mild or profound, is not recommended, because it interferes with short, medium and long-term memory and interferes with the processing of the trauma. The use of opioid drugs in sedative doses or benzodiazepines is not recommended by the main international guidelines.
You can request an interview with a specialist experienced in psychotrauma, perinatal psychology and bereavement and discuss with him what is best for you. For the purposes of grieving, in the absence of specific indications, such as a mood disorder already in therapy, tranquilizers and long half-life anxiolytics are not recommended.
Where to start and finish labor
You can agree with the midwife and the doctor to do the labor in the room (if you are in a protected or single room), to avoid coexistence and proximity with other women in labor.
If this is not possible, you can ask the staff to place you in a labor room away from the delivery room, in order to remain as calm as possible. Induced or spontaneous labor has a variable duration, it is therefore appropriate that the environment in which you find yourself is suitable for this very particular phase.
Agree with the midwives in case of special needs or special wishes related to labor, or at the time of delivery. Feel free to give birth in the position you prefer, ask all the questions you want and all the requests that come to mind.
We know how to give birth, even when our babies are no longer alive.
The fact that your baby is no longer alive does not mean that he deserves less care, just as it does not mean that your birth is a less intense and meaningful time than the birth of a live baby.
In the experience of many mothers of the association, a good support from the staff, and a good closeness of the couple, or between the mother and her partner / sister / friend has allowed a good labor and a birth experience comparable to the normal parts. As a result of this, the encounter with the child was simpler, less fearful, more natural, and therefore very important and precious.
It is possible and advisable for the father to be present at the birth, or a close relative of the woman, or a friend, if the mother wishes; there is usually plenty of time to make arrangements, find closeness with the midwife and discuss with her what to do after the baby is born.
The birth of a baby who doesn’t cry is a painful time for parents, and often for hospital staff as well. It is the moment of the first awareness of the fact that we did not imagine the nightmare, but it really happened.
These little lives leave a big footprint, and we parents will never forget their passage. It is for this reason that it can be of great importance to “celebrate” this passage in an appropriate way, without fear or false prejudice.
After giving birth… the baby
It is important to take the time to read these few lines and reflect together on what is best for your couple.
Sometimes parents to protect each other, despite having completely opposite ideas between them, tend to decide automatically and try to impose their decision on the other, without reflecting on what is really important to them.
It would be advisable to talk to each other as a couple, or with other relatives, or with other bereaved parents, to clarify your real needs.
The postpartum is one of the most important and precious moments, and many parents, after many years, have many regrets for not being able / willing to make some small gestures to get to know and greet their baby.
Nothing is mandatory for anyone, so don’t be afraid to make your decision, one way or the other, but first discuss it together, several times and for a few hours, to avoid more pain later.
In the experience of other parents who have faced, like you today, premature births, stillbirths, therapeutic interruptions of pregnancy, or intrapartum deaths, the meeting with the baby was of absolute importance for the well-being of the father, mother and all. the family, and the few parents who did not want to meet the child, often because they did not find support in the hospital staff in this delicate phase, then lasted more difficult to mourn.
However, there are personal reasons that could lead you to decline this meeting, and they must be considered and welcomed with respect.
Why you might want to say NO to meeting the child: Some mothers and fathers feel fear, rejection or annoyance, sometimes anger towards the child who has gone away, and often refuse to see him at first. These emotions are linked to the very first moments of diagnosis, and almost always in the following hours and days they change, even radically, leaving mothers with an ugly and desolating feeling of emptiness and nostalgia for their child.
Many mothers have said that they felt like “on another planet” and did not think “it was happening to them”: this mixed emotion of confusion and pain does not allow you to be fully aware of what to do, and it may happen that you do not understand what it is. better for us, and at the same time to have a great fear.
This sense of fear is amplified by the embarrassment or fear of hospital staff, who are not always prepared to face situations like ours.
Because you might want to say YES to the meeting with the baby: because it is your baby!
As painful as it is to admit it, as emotionally very difficult as it is, even if it is no longer physically with you, your baby is and will remain your baby, of that pregnancy and that part of your life, whether you know him or her. decide not to see it. What could be missing later are the memories of him, of his physicality, of your sharing. This is why it would be important for at least someone from the family to meet the child.
Ideally, parents, siblings if present, close relatives and closest friends should be able to meet and pay homage to the little child.
The meeting with the child
Despite the extreme pain, the loss of your child does not erase the moments you have shared together, which will take on great value over time for your grieving process – it could be of great comfort to you, your partner and other family members. , meet and be able to greet your child adequately, so that you have appropriate memories of his presence among you. If you as a parent so desire, there are many things you can do after your baby is born, even when he is very young, such as in the first half of pregnancy, or seriously ill.
Also keep in mind that after giving birth the baby is warm and soft for at least half an hour, so there is plenty of time to get to know him with the utmost naturalness.
Ask the staff what the baby might look like, also depending on the gestational age: keep in mind that if the baby has been dead for a few days, his skin may have a different color than normal.
If the baby is very small, then in the first trimester of pregnancy, or its growth has stopped many weeks earlier, it may not be possible to see its little body. In this case it is still possible to request the burial, with simple forms available in every hospital, and to carry out some small rites of passage, such as filling a small box with souvenirs symbolizing his presence (see the Memory Box section below). .
Take time to think about all of this and decide what is best to do.
Remember that you can get help from the staff in the “meeting” with your child; if you can’t look at it, or if you’re afraid to pick it up, don’t feel obligated, but ask for some time to reflect and try to talk to someone who can reassure you about this.
Alternatively, ask the staff to collect some memories of your baby for you.
Ask the midwife to guide you in getting to know the baby, and to act as an intermediary between you and him.
Among the memories that you might like are: footprints and little hands, some photos of your baby (which midwives can also take if family members can’t), the identification bracelet, a lock of hair, the birth certificate, a folder with his weight and height.
Try to communicate what you feel and what you think to the caring staff, remembering that in such a difficult moment it is normal to be confused and have many things to ask, change your mind and feel the need to be informed and reassured.
In many hospitals there is a booklet to collect the memories that we have called “ The memories of a Little Prince – The memories of a Little Princess ”, which allows you to have a lot of information gathered all together.
Taking one or more photos of your baby is a way to create memories, and imprint not only his absence, but also his main characteristics in the mind.
Many parents find it tremendously beneficial to having taken or having photos taken of the baby, or with the baby, with the baby in his arms or next to his crib.
Having a memory makes this mourning less bitter and more elaborable, and creating small memories is a precious opportunity.
Usually in Italy the child can stay in the parents’ room for a few hours, in some birth points it is possible to keep the child in the room for a whole shift (all day, or overnight). It is important to inquire about the customs of the department and always agree with the staff according to your needs.
Once some diagnostic samples are taken on the baby after birth, there is no rush to get the baby to pathological anatomy or the morgue.
It is important that you discuss this with the staff, also considering that you may want to show the baby to close relatives who come from out of town.
Even siblings should be able to greet the child, especially from a certain gestational age onwards, and bring him drawings or gifts if they wish, so as to take note of the event and at the same time know the features of the child in order to be able to represent him. best when needed.
Children have a great need to know things as they are and to give them the right name and the right weight, so don’t be afraid to ask the staff for help in facilitating the meeting between your children.
You can wash, dress, wrap your baby with a blanket.
You can do these tasks yourself, or get help from the midwife or nurse.
Taking care of the baby’s body is a way of exercising one’s role as parents, for some it is very important to be able to do this.
If your baby is too small for a standard onesie, the association offers small wool or fleece blankets and small sheets, designed for very premature babies.
Once you say goodbye to your baby, ask the midwife or doctor how and when you will be able to see him again after his autopsy exams, and consider whether or not you want to organize a small farewell ceremony.
On the autopsy
When a baby dies in utero, during birth or after birth, it is very important to investigate the mother, the placenta and the baby’s body in order to identify what caused the death, the triggering cause and any other contributing factors.
Studying these mechanisms is essential to define exactly the events that occurred in pregnancy and also to be able to prevent them in subsequent pregnancies. Many intrauterine and perinatal deaths occur with no apparent cause. However, a correct diagnostic finding allows us to identify a cause in at least 70% of cases.
This result is possible only when the work takes place in a multidisciplinary manner, and appropriate tests are carried out on the mother, father, placenta and baby. All parents should be able to take advantage of this diagnostic possibility. In general, the examinations on the mother are carried out at different times: some at the time of admission, others two months after the birth.
The tests on the baby and on the placenta also have different timings: some tests are performed immediately after birth (for example, taking some skin cells, taking blood), others in the following weeks.
Usually the diagnostic check takes place a few days after the baby’s death, and aims to examine the whole body of the baby, in order to identify the possible causes of death, and to analyze the placenta, often implicated in many pathologies. After the autopsy, the parents can take back the child’s body, which is carefully arranged by the pathological anatomy technical staff and carry out, if they wish, the religious or secular ceremony for burial or cremation.
What is the purpose of the perinatal autopsy: To confirm a previous diagnostic doubt To identify situations not yet diagnosed Can exclude factors such as malformations, infections, growth retardation not detectable during pregnancy If the baby died before birth, can you tell us approximately how long first he died. It can allow you to identify a genetic pathology, and therefore also be useful for other family members. It is important to know that the child’s body is always respected and treated with care by all staff; any doubts can be discussed with the treating staff.
Timing It usually takes about eight weeks to complete all diagnostic investigations. This time may be longer in the case of further investigations; in any case, it will be the staff’s responsibility to respect the times and make an appointment with the parents to discuss the results, and the parents can still remain in contact with the gynecologists and pathologists to understand how things are progressing.
On the burial
Italian law regulates the burial of stillborn children within 27 weeks plus six days and those of stillborn and stillborn children from the 28th week onwards with precise instructions. It is always possible to proceed with the burial / cremation of the child at any gestational age, as long as the parents request it on the appropriate form (download the facsimile); under 28 weeks, Italian law says that the hospital company can ex officio bury all stillborn babies or dispose of them as hospital waste, depending on internal regulations.
Finding out about the current practice in your hospital and in the regions (excluding Lombardy, where all children are buried) allows you to make a truly informed choice about what you prefer as parents.
On the memory box – memories that heal
The memory box is a box used to keep important memories (box of memories is the literal translation), a “place” useful for remembering and honoring the memory of small and precious lives. Each memory box belongs to its family and above all to the child you want to remember, and each family chooses it in the most appropriate size and color. In our association there are small and essential memory boxes, memory boxes full of plush toys, wooden and cardboard memory boxes … there are memory boxes full of life, and memory boxes that told a beautiful story, and others simply full of love, or photographs, or letters. What is the memory box for? Making room for memories, and putting together the most significant ones of the time spent with our children is an operation that can be truly therapeutic; There comes a moment, in mourning, when parents feel ready to reopen drawers and suitcases, and to create a personal space for that pregnancy and for that child, in which to collect objects, thoughts, and small gifts. An example of a memory box A mother tells: “It took me about a year and a half to make mine (making the memory box for me meant definitively accepting that things had gone this way, that is BAD), and when I felt ready to open drawers, choose objects, and put away numerous gifts I realized that I had made a small step forward in my mourning. So, I chose to make the memory box, I thought about it, I looked for a sufficiently large box and I set up Lapo’s box, which is now in his brothers’ closet, close at hand. In the box I chose to put three onesie (my favorites, chosen especially for him), his bodysuits, the pacifier, the test, the folder with the exams, the empty album for the photos I don’t have, the baby loss bow and the gifts of other mothers. When I look at it, I feel relief because it is the result of my journey, and it came at a time when I was ready to make good use of memories. I don’t need to hide it, or to escape its sight, I can look at it and dust it and open it, without feeling myself dying inside. I open it, I still think I would have liked to see him scurry around in his overalls, I smile thinking that as fat as he was, they wouldn’t be for long, and I put everything back in place. I like to think that these few objects are “his” and indicate what he was for me and my family. “
The memory box: a way to fill the void
In the experience of the parents of our association, the emotion that most often accompanies us in the first long months of mourning is the oppressive sense of emptiness and the physical lack of tangible traces of the passage of our children. For some parents this emptiness is even more unbearable than illness and death, because, as often happens, these losses of ours become a nothing to forget. Nobody asks us if we want to remember, nobody gives us help to reconstruct the memories in an adequate way, yet in many places it is considered bizarre to perform the funeral rite or take photographs. Thus, many of us find ourselves full of tragic and very ugly memories, linked to death, but without tangible (and loving) memories of the lives, even if small or in utero, of their children. And so, it happens, that this emptiness in the heart and in the hands, screams in despair and asks to be at least partially filled. Collecting the memories of this passage in its own time, reconstructing the small existential path of our children could serve in the first place to allow ourselves to begin to work on death and therefore on mourning.
The return home, to the “routine”, is very difficult. Each of us clearly remembers the psychological and physical fatigue of returning to the normal world, with the feeling of having lost everything. Parents often describe this coming home with empty arms, as the moment when the pain of grief appears clear for the first time: it’s all true, it’s all over, my baby is dead. The first months after the loss are very delicate, also because few people know about grief and its manifestations and even without wanting to hurt you, they could force you to react and “to return as before”, without showing any understanding for you, and without giving you the right time to orient yourself after the tsunami. If you feel like it, you can download for free and read the first edition of the Little Principles booklet, written a few years ago by Claudia Ravaldi, a few months after Lapo’s death, which retraces all the passages of mourning, in a sort of “map” for orientation. . Furthermore, on the association’s website, there are numerous testimonials that can be an extra help to not feel alone and to be able to reflect on the most important aspects of your pain.
What to do now?
This page is only a concise guide, a practical and emotional first aid for the first moments of pain and disorientation.
For more information, to download useful material and to read the experiences of other parents and share yours with them, you can visit the website www.ciaolapo.it.
We are also on facebook, with the national CiaoLapo page, and with regional pages (look for the page of your region).
If you want you can download a copy of this page in pdf and print it as a reminder.