Opinion: despite the frequency of pregnancy loss, there is a reluctance to discuss the topic

Former First Lady of the United States, Michelle Obama recently shared her experiences of pregnancy loss, the most common complication of pregnancy. Pregnancy loss can occur at any stage from conception to birth. Research tells us that one in four confirmed pregnancies will end in a miscarriage, which is the loss of a pregnancy less than 24 weeks (six months) gestation. Pregnancies can also end in the stillbirth of a baby, which is defined as a baby (more than 24 weeks gestation to birth) who is born having never shown signs of life.

Globally, 2.6 million babies are stillborn each year. Most of these stillbirths occur in low- and middle-income countries and are related to poor access to health and social care. Globally, stillbirths outnumber neonatal deaths yet remain almost invisible on the world health agenda.

In high income countries, an estimate 1 in 200 confirmed pregnancies will result in a stillbirth. In Ireland in 2016, 250 babies were stillborn with a further 157 neonatal deaths. Major congenital anomaly (any genetic or structural defect incompatible with life or potentially treatable but causing death) remains the primary cause of death in over 30 percent (31.2%) of stillbirths in Ireland. In other jurisdictions, pregnancies affected by major congenital anomalies may be terminated. Specific placental conditions (enough to cause death or be associated with fetal compromise such as fetal growth restriction) were the second most common cause of stillbirth (28 percent) in Ireland.

From RTÉ Radio 1's Today With Sean O'Rourke Show, a report on the International Stillbirth Alliance annual conference with Collette O'Donovan and Dr. Keelin O'Donoghue

Despite the frequency of pregnancy loss, there remains silence and taboo around the topic. Couples may not wish or might not be encouraged to share their experiences of pregnancy loss. While many couples may be aware of the chance of an early pregnancy loss, very few are aware of late miscarriage and stillbirth. The idea that a baby may die before it is born is a difficult concept for us as humans to comprehend. We expect there should be a long time-span between birth and death. Stillbirth shakes our very foundation of a perceived natural order. If that can happen, then the world as we know lacks any certainty.

The death of a baby is a catastrophic event in any couple's life. When embarking upon a pregnancy, they never imagine that this could be the outcome. No one talks to them about the possibility, either due to the stigma associated with stillbirth or the paternalism of not wishing to upset them. Yet in a recent in-depth study with eight heterosexual couples, participants once again highlighted the fact that no one had warned them that their baby may die.

Grief is a natural response to loss. We love deeply, therefore we will deeply grieve the loss of that which we love. Due to historically engrained understandings of grief, society often expects grief to be time-limited and the bereaved to be able to "move on" from their grief.  However, in the 21st century, we need to acknowledge more modern understandings of grief and that the bereaved will maintain an ongoing relationship with the deceased which not be time-limited. The loss of that person will always be present.

From RTÉ Radio 1's Drivetime to mark International Pregnancy and Infant Loss Da, Marie Creegan speaks about her own experience of losing two babies

There are differences in how grief may be expressed, such as gender differences, and these require careful consideration. A feminine grief response may result in open displays of grief such as crying or wanting to talk through feelings and emotions. A masculine grief response may be to not talk about the loss but rather to remain busy and engage in practical activities. What is certain is that there is no one right way to grieve. Differences in grieving styles need to be discussed with couples to minimise relationship conflict. Open communication can help with this challenge.

Research tells us that parents want to have their baby acknowledged as a person who existed and mattered and for their parenthood of that individual baby recognised. They want to be able to share their baby, share their grief and to try to make meaning from their loss. Couples can only do this well if family, friends, and wider society provide a safe space to support their grief. Indeed, the silence surrounding stillbirth may also be contributing to delays in seeking to prevent it. How can we change something that remains unacknowledged?

What can we do to break the silence and taboo about pregnancy loss? Firstly, society needs to openly acknowledge that some pregnancies will not result in a live birth despite advances in maternity care. This should not hinder efforts to reduce preventable deaths, but couples should be informed of this potential outcome.

From RTÉ Radio 1's Drivetime, a report on the introduction of the National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death by Minister for Health Simon Harris in 2016

Secondly healthcare professionals need to discuss with couples the ways in which they can prevent pregnancy losses, such as stopping smoking, tackling obesity and empowering women to be aware of their baby’s fetal movements in pregnancy. Thirdly, couples who experience pregnancy loss should receive high-quality bereavement care both at the time and in the aftermath of loss.

Finally, most couples will go onto to have a pregnancy after loss and many within a short time of their loss. This subsequent pregnancy is not a panacea for all ills. It does not magically remove grief, but may in fact increase it.

Pregnancy after loss is a time fraught with anxiety and fear as couples struggle to maintain hopes of a positive outcome. Compassionate care and reassurance can help couples negotiate these uncertain waters. Parents are adamant that the baby conceived after loss is not a replacement for their deceased child, as they know and love each child uniquely.  Even when their subsequent baby is born, couples need to be supported that this happy outcome may not lessen their grief, but may reveal an additional layer of grief as they may recognise what they did not get to experience with their deceased baby.

In short, do everything you would do if the baby lived

What can you do if you, a family member or friend experiences a pregnancy loss? Create a safe space for parents. Speak openly of the baby who died, encourage the bereaved to share their stories, acknowledge that baby’s unique position in their family, and remember them on their birthday of festivities.

In short, do everything you would do if the baby lived. This baby will always be an integral part of their family's life, denying their existence only perpetuates the hurt of their loss. Mexicans believe that we die twice, once the day we die and again on the day the last living person who remembers us dies. It is all of our responsibility to help to bring stillbirth and pregnancy loss out of the shadows.

The views expressed here are those of the author and do not represent or reflect the views of RTÉ. If you have been affected by issues raised in this article, support information is available online at http://www.rte.ie/support