Q&A with Sands UK charity

In the Blank Shores backstory (bit.ly/blankshores), Emily and Connor experienced the tragedy of a stillbirth.  Unprepared for the enormity of the event, they each reacted differently.  Rather than consoling one another and healing through honest communication, a distance grew between them.

Dealing with stillbirth and neonatal death can profoundly affect peoples’ mental state.  Poor mental health is a central theme of Blank Shores.  We want the film to not only entertain and have artistic merit, but also raise awareness and generate understanding and empathy.  We believe the film has the capability to move people and provoke meaningful conversations.

2.6 million stillbirths occur annually worldwide.  Although 98%* take place in low and middle income countries, stillbirth affects even the most advanced countries and in devastating numbers. *(Statistic obtained from The Lancet).  Every 90 minutes in the UK a family is faced with the death of a baby before, during or soon after birth. (Statistic obtained from the Office for National Statistics)

Today we welcome Jen Coates, Director of Bereavement Support and Volunteering at Sands (Stillbirth and neonatal death charity). Working throughout the UK, Sands was founded in 1978, supporting anyone affected by the death of a baby.  They work to improve the care bereaved parents receive, and fund research to reduce the loss of babies’ lives.

We asked Jen some questions about stillbirth and neonatal death:

Are there common causes of stillbirth and neonatal death?

Sadly, the death of a baby is not rare: around 15 babies died before, during or soon after birth every day in the UK in 2017.  Many people think that stillbirths happen because of a developmental or genetic problem that means the baby could not survive.  In fact, this is the case for less than one in ten stillborn babies. For as many as 6 in 10 stillborn babies, the cause of death is not known.

Are there any known lifestyle choices that could prevent stillbirth and neonatal death?

Not all stillbirths can be prevented however there are ways of ensuring you are as healthy as is possible in pregnancy.  For example, smoking cigarettes in pregnancy is associated with higher rates of stillbirth.  If you smoke while you are pregnant your baby’s growth and development are affected, and problems with your baby’s health and wellbeing are much more likely.  If you smoke you should stop – ideally before your pregnancy but even part way through your pregnancy it is still worth giving up smoking.  Drinking alcohol and taking drugs during pregnancy can seriously affect your baby’s development, as well as increase your risk of miscarriage and stillbirth.

If you are a mother-to-be, there is good advice on the Safer Pregnancy website, but I would stress that if you have any concerns at all you should immediately talk to your GP or midwife.

Would you say there is a higher probability of a relationship breaking down after a couple has experienced stillbirth or neonatal death?

The death of a baby can put an incredible strain on any relationship. There may be difficulties in the relationship prior to a baby dying, but the strain on any relationship is huge. Parents may grieve very differently and need totally different things from each other and those around them. Sometimes couples try to “protect” each other, not realising that each of them wants to talk, but they just don’t know how to start.

In straight and gay relationships, often much support is focused on the mother who has given birth and the father or partner is perceived to be less in need of support, or the non-birth parent may perceive themselves as less in need of support than the mother who has carried and given birth to the baby who has died and feel that their role is to protect, rather than allow themselves to grieve..

Why do couples find it hard to deal with the aftermath of stillbirth or neonatal death?

There are many complex reasons why the aftermath of a stillbirth or neo-natal death is so hard. The emotional impact is obviously so challenging, but there may be financial pressures, if one or both parents find it hard to return to work.  There may be difficulties in conceiving again, or differences between parents about whether to try again. In cases where a baby conceived through IVF has died, there may have been many previous losses and further rounds may not be emotionally or financially possible.

Previous stillbirths or neo-natal deaths within the relationship or in previous relationships may also have an impact on recovery.  Where the couple has other children, those children and carrying on a routine whilst grieving can be challenging. Grieving is physically exhausting as well as emotionally so.

What advice would you give family and friends of parents dealing with stillbirth or neonatal death?

Enable parents to have conversations about their baby/ies. Ask them what they looked like, if you didn’t meet them.  Ask to see any photos if they would like to show you. One of the things bereaved parents often say is that they aren’t able to say their baby’s name or feel that people don’t know how to listen or feel awkward when they try to talk about them.  In the early days practical help with shopping, cleaning, looking after other children, may be really useful and enable them to feel supported, but be led by the parents. Remembering that Mothers Day and Fathers Day as well as anniversaries of due dates and birthdays are hard, especially so for bereaved parents.

What forms of aftercare have you found the most effective for grieving parents?

Everyone is different.  Find the support you need and acknowledge that it may be different for each of you.  Try to keep talking.  Sometimes walking and talking is easier than sitting down face to face when grief is really raw.

Physical activity like sport can be really helpful in releasing tension and boosting confidence in your body, which you may feel has “let you down” in some way.  Finding other bereaved parents to speak to can be helpful, as can counselling. Be gentle with yourselves and each other. Anniversaries are hard as are other special occasions, so it can be good to acknowledge this and have a plan for how to handle the buildup and the day itself.

Do you have any exciting new research on stillbirth and neonatal death which might prevent future occurrences?

The results of a Sands funded study have shown a direct link between the position pregnant women go to sleep in and the risk of stillbirth.  Importantly, it also highlights what pregnant women can do reduce the risk to themselves and their baby.

The Midlands and North of England Stillbirth Study (MiNESS) is the largest of four similar studies which have all shown the same link between the position that a woman goes to sleep in and stillbirth after 28 weeks of pregnancy.  The findings clearly show that a pregnant woman who goes to sleep on her back is more likely to suffer a stillbirth after 28 weeks of pregnancy than if they slept on their side.  If all pregnant women in the UK went to sleep on their side in the third trimester, MiNESS estimates a 3.7% decrease in stillbirth, saving around 130 babies’ lives a year. Importantly, the research also shows that it is the position a woman goes to sleep in that is important, not the position they wake up in.  This information is key in empowering mums to be with the know-how to make them and their babies as safe as possible during pregnancy and help reduce the baby death rate in the UK. More information can be found here.

Other more recent positive findings include gestational diabetes and stillbirth and a blood test to identify a liver condition.  We are funding a few things that fall under our aim of preventing baby deaths or understanding why babies die such as Inequalities in stillbirth and Prediction and prevention of perinatal death.

Baby Loss Awareness Week takes place from 9 to 15 October every year.  It’s an opportunity for parents, their families and friends to acknowledge and remember their precious babies who have died.  It is led by Sands in collaboration with over 60 charities in the UK. Baby Loss Awareness Week is also a platform to call for tangible improvements in research, care and policy around bereavement support, and highlights bereavement support and services available for anyone affected by the death of a baby at any stage.

Sands is here to support anyone affected by pregnancy loss or the death of a baby: www.sands.org.uk/support

Find out how you can make a difference by fundraising or volunteering for Sands: www.sands.org.uk/get-involved

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