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              Why we need to talk about losing a baby

              Why we need to talk about losing a baby

              WHO/M. Purdie


              Losing a baby in pregnancy through miscarriage or stillbirth is still a taboo subject worldwide, linked to stigma and shame. Many women still do not receive appropriate and respectful care when their baby dies during pregnancy or childbirth.
               Here, we share your stories from around the globe.




              Miscarriage is the most common reason for losing a baby during pregnancy. Estimates vary, although March of Dimes, an organization that works on maternal and child health, indicates a miscarriage rate of 10-15% in women who knew they were pregnant. Pregnancy loss is defined differently around the world, but in general a baby who dies before 28 weeks of pregnancy is referred to as a miscarriage, and babies who die at or after 28 weeks are stillbirths. Every year, 2.6 million babies are stillborn, and many of these deaths are preventable. However, miscarriages and stillbirths are not systematically recorded, even in developed countries, suggesting that the numbers could be even higher.  

              Around the world, women have varied access to healthcare services, and hospitals and clinics in many countries are very often under-resourced and understaffed. As varied as the experience of losing a baby may be, around the world, stigma, shame and guilt emerge as common themes. As these first-person accounts show, women who lose their babies are made to feel that should stay silent about their grief, either because miscarriage and stillbirth are still so common, or because they are perceived to be unavoidable. 



              Jessica Zucker, clinical psychologist and writer, USA

              "As a clinical psychologist, I specialise in women's reproductive and maternal mental health and have done so for over a decade. It wasn't until I experienced this 16-week miscarriage first-hand that I could truly grasp the anguish and the circuitousness of grief I had heard my patients speak of for so many years. After my miscarriage, I poured over the research which shows that a majority of women report experiencing feelings of shame, self-blame and guilt following pregnancy loss."


              All of this takes an enormous toll on women. Many women who lose a baby in pregnancy can go on to develop mental health issues that last for months or years– even when they have gone on to have healthy babies. 

              Cultural and societal attitudes to losing a baby can vary tremendously around the globe. In sub-Saharan Africa, a common belief is that a baby might be stillborn because of witchcraft or evil spirits.



              Larai, 44, pharmacist, Nigeria

              “Coping with my miscarriage was traumatic. The medical staff contributed a lot to my grief despite the fact that I am a doctor too. The other issue is the cultural attitude. In most traditional African cultures, people think you can lose a baby because of a curse or witchcraft. Here, child loss is surrounded by stigma because some people believe there is something wrong with a woman who has had recurrent losses, that she may have been promiscuous, and so the loss is seen as a punishment from God."

               

              People, especially those with high profiles, are taking to social media to share their experiences, like in the case of Kimberly Van Der Beek and her husband, actor James Van Der Beek, best known for his role in American television series Dawson’s Creek. The couple recently shared a heartfelt post on Instagram where they opened up about the painful process of suffering multiple miscarriages — and then learning how to move past it.



              Kimberly Van Der Beek, USA

              "I’ve had three miscarriages, all around 10 weeks gestation. I let them all happen naturally. I had a loving husband, a compassionate birthing team and I felt spiritually grounded about them. And even in the best of circumstances, I was devastated every single time. After one of them I sat in the shower crying for almost five hours. What I find disheartening is that not all women, or fathers for that matter, are treated with the same compassion or have support during this gut wrenching time".




              There are many reasons why a miscarriage may happen, including fetal abnormalities, the age of the mother, and infections, many of which are preventable such as malaria and syphilis, though pinpointing the exact reason is often challenging.

              General advice on preventing miscarriage focuses on eating healthily, exercising, avoiding smoking, drugs and alcohol, limiting caffeine, controlling stress, and being of a healthy weight. This places the emphasis on lifestyle factors, which, in the absence of specific answers, can lead to women feeling guilty that they have caused their miscarriage.



              Lisa, 40, marketing manager, UK

              “I’ve had four miscarriages. Each time it happens, a piece of you dies. The most traumatic was the first one. We were so excited about our new baby. But when we went in for the 12-week scan, I was told I had a missed miscarriage, also called a silent miscarriage, which meant the baby died a long time ago but my body hadn't showed any signs. I was devastated. I also couldn’t believe that they were going to just send me home with my dead baby inside me, and no advice about what to do."



              As with other health issues such as mental health, around which there is tremendous taboo still, many women report that no matter their culture, education or upbringing, their friends and family do not want to talk about their loss. This seems to connect with the silence that shrouds talking about grief in general.  



              Susan, 34, writer, USA

              “I’ve been on the fertility train for nearly 5 years. As my own IVF began, I quickly learned that I had no idea what I was in for; it was so physically and emotionally exhausting. Thankfully, I did get pregnant, and my husband and I were so excited. However, after 7 weeks, the baby stopped growing. I then quit IVF hormones, and after 2 more weeks, the miscarriage began. It lasted 19 days. I didn’t realize miscarriages were a long process of pain and heavy bleeding. That the realities of fertility and miscarriage are so shrouded behind shame and silence."




              Stillbirths happen later in pregnancy, and 1 in 2 stillbirths occur during labour, many of which are preventable. Around 98% of stillbirths take place in low- and middle-income countries. Providing better quality of care during pregnancy and childbirth could prevent over half a million stillbirths worldwide. Even in high-income countries, substandard care is a significant factor in stillbirths

              There are clear ways in which to reduce the number of babies who die in pregnancy – improving access to antenatal care (in some areas in the world, women do not see a health care worker until they are several months pregnant), introducing continuity of care through midwife-led care, and introducing community care where possible.

              Integrating the treatment of infections in pregnancy, fetal heart rate monitoring and labour surveillance, as part of an integrated care package could save 1.3 million babies who would otherwise have been stillborn.   



              Emilia, 36, retailer, Colombia

              "When I had a stillbirth at 32 weeks, my baby already had a name. I rushed to the clinic with very high blood pressure. After a checkup, the doctor told me to take some rest and prescribed a medication to lower my blood pressure. After a week I still had the same symptoms. The doctor rushed me to take an ultrasound and he told me that the baby had no vital signs. If I had been given more information from the very beginning, and received more medical attention at critical moments, my baby could have been saved."


              How women are treated during pregnancy is linked to their sexual and reproductive rights, over which many women around the world do not have autonomy. 

              Societal pressures in many parts of the world can mean that women get pregnant when they are not physically or mentally ready. Even in 2019, 200 million women who want to avoid pregnancy have no access to modern contraception. And when they do get pregnant, 30 million women do not give birth in a health facility and 45 million women receive inadequate or no antenatal care, putting both mother and baby at much greater risk of complications and death. 


              Divya Samson Panabakam, 30, consultant, India

              "In 2013 I had my first miscarriage. As soon as I started bleeding I went to the hospital and I was sent to get a sonogram, but the person in charge thought that I wasn’t married and made me wait. I asked her: “Even if I wasn’t married, why would you want to treat someone who is losing a baby this way?”. She just looked at me and replied: 'It’s not an emergency, only a woman over 60 would be treated as an emergency case'."


              Cultural practices such as female genital mutilation (FGM) and child marriage are hugely damaging to girls’ sexual and reproductive health, and the health of their babies. Having babies too young can be dangerous for both the mothers and the babies. Adolescent mothers (aged 10 – 19 years) are far more likely to have eclampsia or uterine infections than women aged 20-24 years, which can increase the risk of stillbirth. Babies born to women younger than 20 years are also more likely to be of low birthweight, preterm, or have severe neonatal conditions, all of which can increase the risk of stillbirth. 

              FGM increases a woman’s risk of prolonged and obstructed labour, haemorrhage, severe tearing and a need for instrumental delivery. Her baby is much more likely to need resuscitation at delivery and faces a high risk of death during labour or after birth.




              Putting women at the centre of their care is vital to a positive pregnancy experience –  biomedical and physiological aspects of care need to be joined with social, cultural, emotional and psychological support. 

              Yet many women, even in developed countries with access to the best healthcare, receive inadequate care after losing a baby. The language used around miscarriage and stillbirth can be traumatic in itself – terminology referring to an “incompetent cervix” or a “blighted ovum” can be distressing.



              Andrea, 28, stylist, Colombia

              "When I was 12 weeks pregnant, I went for a check-up and had an ultrasound. The doctor told me that something was wrong without specifying what it was. The next day I woke up and noticed that the bed sheet were stained with blood. I did not receive any information on why I had a miscarriage. The nurses were very cold and unfriendly and they behaved as if it was just a medical procedure. Among all the staff at the hospital the only one who had a bit of humanity was the doctor, who later reassured me that I could try again to get pregnant."


              Depending on the policy of the hospital, the babies’ bodies may be treated as clinical waste and incinerated. Sometimes when a woman finds out her baby has died, she is required to carry the dead baby for several weeks before she can give birth. Though there may be clinical reasons for this delay, this is distressing to the woman and her partner. Even in developed countries, women may birth their dead baby in maternity units, surrounded by women with healthy babies.

              Not all hospitals or clinics can adopt new policies or provide more services. This is a reality of overburdened health care systems. Yet encouraging more sensitivity in dealing with bereaved couples, and removing the taboo and stigma around talking about baby loss does not need to cost money. This is reflected in some of the stories featured here.



              Becky, 38, primary school teacher, Viet Nam/UK

              "My husband and I were over the moon when I fell pregnant with twin girls and were devastated to lose one of them – we called her Isla - at 34 weeks. I was terrified that we were going to lose our other baby too, and insisted on staying in hospital. The next day I delivered our girls via caesarean section. Overall the hospital was incredibly supportive and we were given a private room and time to spend with Isla. However a number of doctors showed complete insensitivity with one even asking why I was crying and telling me to cheer up".

              Healthcare staff can show sensitivity and empathy, acknowledge how the parents feel, provide clear information, and understand that the parents may need specific support both in dealing with their loss and in potentially trying to have another baby. Providing human rights based care, that is socioculturally relevant, respectful and dignified is as much a requirement for competent maternal and newborn care as clinical competence.



              Sarah, 40, civil servant, Australia

              "Stillbirth is so common in Australia when it happens to you or someone you know. It’s suddenly everywhere. Stillbirth affects around 2000 Australian families each year. Our rate of stillbirth hasn’t changed in 20 years and for Indigenous Australians it’s twice as high. Yet before it happened to me and I became that one in six, I never considered that babies could die in utero. It’s never spoken about. The doctor told me about my increased risk of cord prolapse with polyhydramnios but no one mentioned I was at an increased risk of fetal death".

              Details_WHO_MiscarriageStory_TeddyBear

              Key messages around support

              1.

              It can be difficult to know what to say when someone you know loses a baby in pregnancy, but sensitivity and empathy can provide support and allow space for people to talk about how they feel:

              Rather than saying "Everything happens for a reason, this wasn’t meant to be”, try saying something like “I’m so sorry. I can imagine this is very sad for you.”

              Rather than saying “At least you know you can get pregnant”, try just to listen. You may ask “How are you?”

              Rather than saying “At least you have a healthy child already", perhaps say "I'm deeply sorry for your loss”.

              2.

              The experience of losing a baby may differ around the world, yet stigma, shame and guilt emerge as common themes.

              3.

              Many women who lose a baby in pregnancy can go on to develop mental health issues that last for months or years– even when they have gone on to have healthy babies.

              4.

              We know how to save more babies dying in pregnancy – improving access to antenatal care (in some areas in the world, women do not see a health care worker until they are several months pregnant), introducing continuity of care through midwife-led care, and introducing community care where possible.

              5.

              Every year, 2.6 million babies are stillborn, and many of these deaths are preventable. Integrating the treatment of infections in pregnancy, fetal heart rate monitoring and labour surveillance, as part of an integrated care package could save 1.3 million babies who would otherwise have been stillborn.




              The Unacceptable Stigma And Shame Women Face After Baby Loss Must End

              Op-ed by Dr Princess Nothemba Simelela, Assistant director-general for family, women, children and adolescents, WHO



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              All illustrations WHO/M. Purdie


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