Right at the start, I’d like to praise the midwifery students, who once again proved themselves with the organisation of the Midwifery Forum. Above all, I think it’s important that they kept to the planned schedule. At various conferences and meetings (except abroad—I haven’t come across this there), you often run into (overly) long lectures by some speakers, meaning inadequate moderation. In my subjective opinion, this was the best-attended forum. Sincere congratulations.

As I already said on the Facebook page, every woman is a mother, whether she gives birth to a living baby, a stillborn baby, or loses the baby soon after birth. And every father becomes—and remains—a father. But when death and the loss of a baby are involved, we become lost and uncertain, and we’d rather step aside. But that isn’t right. At this year’s forum, we were able to gain information from people from different professions who, in one way or another, encounter loss: the founder of the Solzice Association, a psychologist, a social worker, a paediatrician, a gynaecologist, a midwife, and last but not least, the most important of all was the story of a mother who faced the loss of her firstborn. I tried to summarise the speakers’ thoughts for you, so that you might reach for additional reading on this topic yourselves, so that the topic of children’s death will no longer be taboo for you, and so that you’ll be able to respond appropriately to parents who have lost a baby. And finally, so that you can help those who have to face loss.

In Slovenia, there were 99 stillbirths in 2015.

Perhaps to start with a definition: a stillborn baby is a baby born with no signs of life, with a birth weight over 500 g, or a gestational age over 22 weeks, or a length over 25 cm. However, gestational age and length are used only when weight data are not available (NIJZ). Stillbirth rate is the number of stillborn babies per 1,000 total births.

Petra Urek – Solzice Association

In 2001, after the death of her little girl, an idea began to develop in the family for an “association” that would provide help to women and couples facing a similar situation. Mothers with similar experiences came together and asked themselves how they could help others who find themselves in similar situations. The association was officially founded in 2004.

At that time, their book “Empty Cradle, Broken Heart” was also published. A brief excerpt from the Solzice Association’s website :

“The book is primarily intended for grieving parents who, through a long and difficult period of mourning, search for many answers. It is also intended for everyone who comes into contact with them: medical staff, relatives, friends, co-workers …
The book is the result of the work of grieving parents in collaboration with experts from fields in any way connected to this topic. You can buy the book in Mladinska knjiga and DZS bookstores, the Vale Novak bookstore, or via this website.” ”

The association:

• informs parents about their rights and the rights of their stillborn baby
• helps with preserving memories
• prepares parents for the birth of a stillborn baby and, if needed, helps with preserving memories and with saying goodbye
• provides support individually and in groups
• connects with Social Work Centres (most often due to parents’ financial hardship; they are entitled to a benefit upon the death of a child)
• works with funeral homes
• organises support groups
• holds individual conversations with families
• provides help with legal matters related to the baby’s burial
• organises workshops for grieving parents and families
• organises lectures by various experts in the field of grief and personal growth
• prepares remembrance packages for families of deceased children
• moderates forums on Slovenian family portals
• works well with maternity hospitals
• runs workshops for staff who work with grieving families and dying babies
• provides supervision for professionals who work with grieving families or with death
• experiential workshops “My relationship with death” with Andrej Debeljak, MSc, and “Compassionate support for grieving parents” and “The challenge for professionals who face the death of children”
• raises awareness in the media among the wider public
• participates in congresses and consultations and raises awareness among the wider public

Memorial parks – Park of Bluebells (Ljubljana), Zvezdice (Postojna) and Field of White Roses (Maribor)

October 15 International Pregnancy and Infant Loss Remembrance Day (in all parks, at the same time, white balloons with dedications are released into the air)

“Midwives and doctors want to bring life into the world—healthy life. Bringing forth death is a burden that exceeds our strength, both in time and emotionally.”

Memories: Over time, when the shock passes and mourning begins, parents are grateful for things that remind them of their baby. That’s why maternity hospitals are encouraged to treat the baby with respect and for healthcare professionals to help preserve memories. Parents watch our every movement, every word. That’s why photos, footprints, a lock of hair … Memories are all they have of the baby they longed for, and therefore their greatest treasure. At that time, parents aren’t interested in diagnoses and paperwork—there are us, them, and their dead baby. Most often, we are the first, the last, and the only ones to touch their babies.

Assoc. Prof. Vislava Globevnik Velikonja, PhD, specialist clinical psychologist

Pregnancy is not always a time of joyful anticipation and happy events.

With advances in medical technology, we have more and more insight into anomalies and what is happening during pregnancy. As a result, there are more pregnancy terminations.

Even today, around the world, we find different questions and attitudes regarding perinatal loss and death. In the 1970s, interest began in the grieving process and the needs of grieving parents. Perinatal grief is one of the most difficult forms of grief; it can last from 6 months to 2 or 3 years, and that is still considered normal.

Bonding between mother and fetus (“maternal–fetal attachment”) begins very early.

Slovenia:

1997 – first training on perinatal loss

2000 – Park of Bluebells in Ljubljana

2002 – Solzice Association and the book “Empty Cradle, Broken Heart”, and other memorial parks

2016 – the publication “A Nest Without Little Birds” (Medical staff also need help in supporting parents after the loss of a baby, so the gynaecology clinic in Ljubljana published this publication)

Perinatal grief: stillbirth, neonatal death, miscarriages/feticides, specific infertility groups (for some women, even each period or an IVF procedure can trigger depression), the birth of physically and mentally disabled children, the death of a child after a severe illness.

Terminations after fetal abnormalities are diagnosed are carried out at the parents’ request; parents also face feelings of guilt and ambivalence about whether the decision was right, and they have similar needs to parents whose termination happens later in pregnancy.

Grief takes place on several levels: a self-limiting (acute phase 2–6 weeks; gradual recovery up to 2 years or more) process, emotional level, physical level, behavioural level.

Grief after the loss of a wanted pregnancy is a socio-cultural experience as a “failure”; consequences can include loss of self-image, future, object of love, parental role, trust in the ability to carry a healthy baby to term, etc.

Stages of grief:

• Shock, numbness (a few days to 3 weeks; emotional numbness, denial, not accepting the reality of the loss; physical symptoms include breathing difficulties, an empty feeling in the stomach; protection from the most intense emotions)
• Acute phase, yearning, protest: this is when the woman “breaks down”; it lasts 2–3 months. This is a period of strong emotions, deep sadness, pain, a changed experience of oneself; the mother may still feel the baby, not knowing whether it’s real or if she only dreamed it; withdrawal; symptoms of severe depression. Sick leave is recommended; antidepressants are contraindicated in this period.
• Disorganisation, despair, depression; several months to 1 year; despair, hopelessness— even if they seek self-help, it doesn’t help; it simply fades over time.
• Reorganisation, usually follows after the first year after the loss; emotional grieving slowly comes to an end and the person returns to everyday activities, but there are days (the date of the burial, miscarriage, holidays, etc.) that still bring the strongest emotions to the surface.

You can read more about grief here.

The whole family needs support, because it affects all family members. In women, mental health disorders are possible as a complication of grief. One third of couples have serious relationship difficulties (different grieving styles, mutual expectations, difficulty coping with strong emotions, external pressure).

IT’S IMPORTANT TO KNOW THAT MEN AND WOMEN GRIEVE DIFFERENTLY! Men usually move on about 1 month after the loss; they encounter and process strong emotions in the first month, and there is nothing wrong with that. However, it must be emphasised that this kind of grieving must not be imposed on the woman. The woman only starts to process it, talk about it, etc., after about 1 month. Further possible complications include siblings’ difficulties (personality issues; a surviving twin may feel guilt), problems in subsequent pregnancies (higher anxiety, postpartum mental health disorders, a “replacement child”, etc.).

Pathological grief: worsening mental and/or physical health and/or social adjustment; it occurs in 20% of women. Predictive factors: problems during pregnancy, lack of support from husband and family, and not having said goodbye to the baby appropriately.

50% of couples try to conceive again, while the other half bury themselves in work. Neither is good. Grieving is therefore important, as is expressing emotions, and it’s never too late to grieve. Ceremonies and rituals help us release emotional tension, manage sadness, and have a protective role.

Parents’ rights after the death of a baby were published by the Canadian Association for Perinatal Grief in 1995 (Perinatal Bereacemnet Team and women’s collage in Toronto, 1995):

Needs of grieving families: sensitivity, understanding, compassion, openness, choice, support, the opportunity to be with their deceased baby, a lock of hair, privacy, spiritual needs, encouragement, respect, enabling the creation of memories.

Children’s grief

Children grieve too; every child senses that something is happening in the family.

Children older than 9 grieve similarly to adults. Younger children up to age 5 feel their parents’ sadness even though they don’t understand death. From ages 5–9, children may imagine the deceased as a ghost, a skeleton, etc.

Children feel strong emotions and are not able to verbalise them, and they try to protect their parents. They may feel guilt; they often don’t show grief outwardly, and their grief comes in waves. At first, the child may show nothing for 2–3 months; after 3 months, or when mum spontaneously smiles again, they may ask a question. What’s important is that we explain death and grief to them; parents must say why they are sad and use the word DEATH. Don’t use words like the sibling “went away” (the child will ask: when are they coming back?) or that they “fell asleep” (when will they wake up, what if I fall asleep too, etc.). We need to help them express emotions, ensure their life continues to develop normally, and tell them that they and their parents are not going to die yet. The school and kindergarten should also be informed about what happened in the family so they can understand the child’s behaviour.

Grandparents grieve both for their grandchild and because they are distressed for their own child. They need to be taught how to help. The wider circle also needs to be advised not to tidy away what had been prepared at home for the baby. Keeping things in their place helps preserve the parents’ status.

We healthcare professionals are the ones who help create memories—physical and emotional.

What have we improved in the area of perinatal grief? We need to emphasise the grieving process in fathers. Therapeutic programmes for siblings, public awareness, refined procedures for work in maternity hospitals (e.g., only two midwives care for the couple)—these are all new developments.

Professional help – counselling, education, and support for counsellors;

Psychological support – the UKC Ljubljana publication “A Nest Without Little Birds”. Before terminating a pregnancy, preparation for miscarriage/birth of a stillborn baby is important; psychologists provide counselling when deciding on termination or on life with a disabled child. They inform the couple about the process and the meaning of their decisions (whether they want to see the baby, create memories, etc.). After the termination, they need to be informed about the grieving process and given appropriate information and sources of help (sick leave, maternity leave, psychological support, support groups, online resources, phone numbers, etc.).

Outpatient psychological support – after discharge, supportive psychotherapy, couples/family counselling, psychological preparation for the next pregnancy, sometimes psychiatric support, and additional preparation in subsequent pregnancies.

You can read her lecture in detail in this article: click

• After a miscarriage (fetal weight up to 500 g), a woman is entitled to 2–4 weeks of sick leave. After that, women will often still need sick leave, as they won’t yet be able to work. A GP can prescribe up to 1 month of sick leave, and then must refer her to a specialist (psychologist, psychiatrist) who can extend it.
• After birth (fetal weight over 500 g), a woman is entitled to 42 days of maternity leave (arranged at the Social Work Centre where she has permanent residence). This is also not enough for grieving, so we again offer the option of the GP and then a specialist opinion, e.g., a psychologist.
• Everything is available via referral without waiting times. Within this, there is access to psychiatric help, but it is not recommended in the early phase, because it disrupts the normal grieving process and is NOT treated with antidepressants. Antidepressants are introduced after 4–5–6 months if the person cannot pull themselves together and function normally.
• Fathers should always be included. The father should also take sick leave (via the GP) so they go through the grieving process TOGETHER. Paternity leave is not “entitled” in this situation; instead, they use sick leave or leave. It also depends on employers.

Nataša Kumer, BSc Midwifery

Midwife Nataša spoke about procedures for terminating pregnancy in the 2nd and 3rd trimester at UKC Ljubljana, in the high-risk pregnancy unit. I found it interesting that couples from abroad come to Slovenia for pregnancy termination. The reason is that we are more liberal here, and our legislation provides that couples decide for themselves about the birth of children.

Termination before 22 weeks of pregnancy – they take the medication mifepristone on the day of admission or at home, and are admitted to the ward 36 hours later. They try to ensure peace and quiet and that one midwife works with them. On admission, they complete documentation, obtain original test results, administer the prescribed therapy, and prepare the woman for a gynaecological exam. They show the couple the space and also allow the partner to be present. She emphasises how important verbal and non-verbal communication by healthcare professionals is. The woman miscarries in the room.

After 22 weeks, a feticide is performed and the procedure continues after 24 hours. The woman is hospitalised the whole time. After 22 weeks of pregnancy, the woman gives birth in the delivery room.

The procedures are practically the same in Maribor as well.

Parents’ rights: they can see the fetus, hold it, take photos, create memories; religious rites are enabled; parents are enabled a dignified farewell regardless of gestational age (miscarriage or birth); we do not impose our will.

At discharge home, they still can’t assess the psychophysical state, so they provide instructions (sick leave or maternity leave, offer a conversation with a psychologist, etc.). Parents receive verbal and written instructions (breast changes/start of lactation; tight bra, cooling the breasts and leaving them as undisturbed as possible; instructions about lochia, pain, etc.) and they emphasise a check-up with the chosen gynaecologist 4–6 weeks after birth.

Helena Mole, MD, specialist in paediatrics

The speaker talked about her own experiences as a paediatrician employed at UKC Ljubljana.

We all certainly have an ideal picture in our heads of pregnancy and birth itself. And that ideal is shattered already when a baby is born too early. She says that paediatricians do encounter the death of children less often (in terms of miscarriages, feticides, stillbirths), but on the other hand they face an equally difficult situation—premature babies and the death of a baby after birth. The biggest dilemma is always how to tell the parents.

She herself once found herself in a situation for the first time where she could do nothing more. She had a baby for whom she had done everything, and yet she could do nothing more. Her mentor “comforted” her with the words: “You know, sometimes you can’t do anything more.” And for someone who wants to help, who is trained to help (doctor, midwife, nurse), that is a shocking realisation. And you ask yourself whether you REALLY can’t do anything more at that moment to help that baby die with dignity—without pain—and to communicate that to the parents as well.

Telling parents of premature babies about a death is “different”—we can’t really say it’s easier. But these parents met their baby soon after birth in the intensive care unit, where the baby was connected to various machines, with wires around them, in an incubator, and so on. So the parents have already faced one kind of shock and are prepared for the baby’s death all the time. Parents themselves also say they had doubts and a sense of foreboding, that they saw we did everything, but they were afraid their babies wouldn’t make it.

I can’t lie to parents and say we know how they feel, that we know what they are going through, because we haven’t experienced it ourselves. But it’s right not to hold back if we feel sad—our emotions just must not take over. We show them that we care.

The birth of a premature baby alone shatters parents’ ideal. At that time, a lot of conversations are needed, explanations of possibilities, that everything can end well. Her experience was also interesting when she said that after a few years of work she thought nothing could surprise her anymore; that she explains news to parents both professionally and in plain language so they understand. Then one night she was surprised by the birth of triplets. Satisfied that the babies were stable and being cared for appropriately, she proudly shared the news with the mother and got a cold shower: “Why are you telling me this now if they’re only 26 weeks?” She was left speechless. I believe you’ve also found yourselves in a similar situation that brings you back to reality and shows you that you can never predict and know everything. Later, the mother admitted that her serious response was the result of disappointment because she had imagined things differently. In the end, everything turned out well and the children are growing nicely.

Delivering bad news: healthcare professionals also face fear about how to tell parents that their baby is seriously ill—for example, that the baby has trisomy 21. She always wanted to come prepared for such a conversation, but we know reality is different. For a paediatrician, it’s also a shock to step into the delivery room when they don’t know exactly WHY they were called—meaning they know nothing about the mother, the family, the course of pregnancy and birth—yet in a short time after birth you have to deliver such devastating news.

Here she also gave an example from practice from the beginning of her career, from which we can learn a lot. She was shaken by the experience when they called her to the delivery rooms to come see a baby because it had a strange belly. While walking to the delivery room, she was thinking what it could be. When she entered the room, the baby was on the warming table, and the doctor was stitching the woman’s episiotomy wound. From a distance it was clear the baby had trisomy 21. What do you say to such a mother? In that short time after birth, when she probably hasn’t even held the baby yet. She found herself in a dilemma. She responded in a way she would never respond today—she said that at that moment everything was OK with the baby and that they would examine the baby more closely tomorrow. She learned that today she would go back and explain what was going on—especially because the next day the news was delivered to the parents in an inappropriate way, which hurt them. They resented her for not telling them the news herself already. Experience makes you better. We learn from mistakes. Looking back at how she would react today, she would already ask on the phone: “Who is the mother, which baby, medical history?” If she saw they were stitching the episiotomy wound, she would wait until the mother was taken care of, so that the first bonding and breastfeeding could happen. In other words, she would choose a more appropriate moment.

So what can we learn? That communication is key. That paediatricians also need to be given instructions and information that will make the situation easier when they enter the delivery room—so they can prepare at least a little. Even though you’re never fully prepared, it’s easier if you know what you’re dealing with.

To a certain extent, you can empathise with the parents’ role. But our personal, emotional note is important. Sometimes even a single sentence makes a difference. We also experience stress in these situations. We need more time ourselves to process it and calm down. But the good feeling of standing by someone gives us a sense of fulfilment.

It’s also important for paediatricians to know if the woman had a miscarriage, termination of pregnancy, etc., in the past. And her experience shows that women most often want to talk about it—it’s not something they want to sweep under the rug.

Assoc. Prof. Miha Lučovnik, MD, specialist in gynaecology and obstetrics

A stillborn baby is one born without signs of life; in Slovenia there are 5–7 per 1,000 births, which is slightly above the EU average. This is because Slovenia also has more liberal legislation and we can terminate a pregnancy even after 22 weeks due to anomalies. The incidence is constant.

Risk factors for fetal death sometimes overlap (in women), while in the fetus we have more direct causes—genetic abnormalities, infections (CMV, parvovirus B19 – fifth disease, listeria, syphilis, toxo, etc.), IUGR/SGA. For B19 and CMV we don’t have screening because there’s nothing we can do. Obstetric risks include fetomaternal haemorrhage, which can occur, for example, after a traffic accident. Fetomaternal haemorrhage is characterised by a sinusoidal CTG pattern, isoimmunisation, cholestasis, a nuchal cord.

Risk factors in women: chronic hypertension, preeclampsia, gestational diabetes managed with diet or insulin, pre-existing diabetes, systemic lupus erythematosus, antiphospholipid syndrome, chronic kidney disease, thyroid disease, age over 35, obesity, smoking, alcohol and drugs, multiple pregnancy, IVF, complications in previous pregnancies.

Tanja Petrovova – Obzornik zdravstvene nege 2014: Live-born singletons, 37–42 weeks’ gestation, cephalic presentation among 173,776 births; 67% had no nuchal cord and 33% had a nuchal cord.

After the fetus is born, it makes sense to perform an autopsy so we can compare how well the pathological ultrasound finding matches the histopathological examination.

The speaker emphasised counting movements. Women noticed a change in the frequency and strength of fetal movements before fetal death occurred—in as many as 55% of cases. However, in Slovenia we still don’t have unified guidelines. You can read the article: “Baby’s movements – guidelines.“

Liljana Dreu, university graduate social worker

In some third-world countries, for several weeks after birth they don’t give babies a name and don’t talk about the newborn, because the baby may die and death is something “normal”. They have rituals that help them cope with death more easily.

At the Social Work Centre, women also come more than once who do not complete the 10 preventive pregnancy check-ups covered by compulsory health insurance. A mother’s education affects stillbirth, perinatal mortality, and infant mortality. Lower education represents a higher risk. In the period 2004–2008, only 0.5% of women giving birth had no check-ups, but the risk that a woman would not attend a check-up was 20 times higher in the less educated group.

Among the less educated, risk factors are more often present; in addition, these women also use healthcare services less often. It is known that these women have more illnesses, addictions, and other disorders, and are often victims of violence, which indicates that their needs are more complex. Research shows that these women do not receive appropriate care even when they seek it.

Social welfare rights

The Parental Protection and Family Benefits Act (Official Gazette of the Republic of Slovenia, No. 26/14 and 90/15) regulates:

• insurance for parental protection and the rights arising from it: the right to leave, compensation, the right to reduced working hours, the right to payment of contributions in the case of four or more children, and the right to compensation during breastfeeding breaks.
• family benefits: parental allowance, birth grant, child benefit, large family allowance, child care allowance, partial payment for lost income.

Social assistance in the amount of EUR 292.56, which serves as a funeral and death benefit.

Parents can also receive help through social welfare services—initial social assistance is not tied to place of residence, but all other rights are; they can also have personal assistance, family home help, home help, etc.

Nikita Blatnik, a couple’s experience

Aleksander’s quiet world

It’s a special privilege when a mother tells the story of giving birth to her stillborn baby. We can learn a lot from these stories for the future—what we as healthcare professionals can improve or change to make things easier and better for these couples.

Her pregnancy was marked by nausea; she lost 10 kg, but her gynaecologist didn’t pay attention to it. During pregnancy she also received an injection she shouldn’t have received while pregnant, because her wisdom teeth were also causing problems. She conceived despite taking contraceptive pills. She and her partner decided to keep the baby.

1.5 months before her due date, she thought labour had started. She went for a check-up at the maternity hospital. They kept her, even though labour hadn’t started yet. It was the weekend; on Monday they did a more detailed morphology scan with three doctors and told her that the fetus had not developed well, that it had spina bifida, twisted legs, and they suspected other issues, so they sent her to Ljubljana. Dr Premru and Dr Pušenjak repeated the scan and confirmed what had already been found in Brežice. They suggested terminating the pregnancy. At that moment she didn’t know what to do; she had to write a request for termination of pregnancy. She was received by a nurse who was warm and kind, took her time, explained the situation to her twice, and sent her home to think things through. She decided to terminate, and when she came to the maternity hospital she still wasn’t 100% sure about her decision. Dr Pušenjak said: “I wouldn’t want this for my daughter,” and explained everything to her. That made her think that something was really seriously wrong.

On 14 January they did the first step in the procedure—a feticide—and then induced labour. She experienced labour as something normal. She wasn’t thinking about stillbirth. She had a doula. She was vomiting, so the doula called the nurse/midwife, who “greeted” her with the words: “Oh, so you came for a termination of pregnancy.” And at that moment she shut down completely. After the exam, they found she wasn’t dilated enough for the delivery room. She vomited throughout labour until she received medication.

When she got Aleksander in her arms, she didn’t feel sadness—tears of happiness came. It was a shift change, and the night midwife stayed with her throughout labour, encouraged her, motivated her, and gave her full attention. That was a huge support for her.

Her words were: “You probably never have enough time with your baby, especially when you know they’ll take him away in a few hours. And when they dress him, measure him… I would have preferred that to be closer to the bed so I could make the hand and footprint impressions myself. You can always put the memories away on a shelf and look at them when you want.”

She continues the story: “After the birth they made the prints and photos, we spent some time together, then the midwife took Aleksander and I went back to the room. No one offered me a psychologist beforehand. I got a psychologist after I had already given birth. Before that, when I was in doubt, I didn’t have one. The doula organised the hand and footprint impressions, as well as the photos. I missed a bit more warmth from the nurses in the high-risk pregnancy unit.”

She missed more instructions and information about lochia and breasts. She only knew that if there was bleeding she had to come back. Staying in the maternity hospital was unpleasant also because she could hear and see other babies. She was bothered by comments at home: “You’re still young, you’ll have children…”—this is a delicate topic for conversation. She wanted them to ask her how she was feeling, whether she wanted to talk about the birth, about Aleksander, whether she wanted to describe her baby. Talking about Aleksander helped her, as did talking about the birth, and being able to show a photo.

She points out that time with the baby is limited and that paperwork at the time when bonding and saying goodbye are happening at the same time is not appropriate. She emphasises the role of family and partner. And she says that during the birth of her second child they “praised” her during labour with the words “well done, mum”, but during the birth of her stillborn baby no one said that to her.

Thank you, Nikita.

In Ljubljana, everyone—even miscarriages—go to the Park of Bluebells.