Baby Loss Awareness Week
Baby Loss Awareness Week (during October), help us acknowledge the scale and impact of pregnancy and baby loss. During this week, which is now past its 20th year, we work alongside more than 100 other charities and groups to raise awareness of key issues that affect people who have lost a baby.
Pregnancy and Baby Loss in all its forms, including miscarriage, ectopic pregnancy, stillbirth, SIDS, terminating a pregnancy for medical reasons (TFMR) and newborn deaths, can be hugely traumatic and upsetting for those who experience it.
The sense of loss, the experience of death, the pain and trauma endured in the loss itself, the feelings of hopelessness and despair, the guilt-ridden questions of ‘what if’, plus the medical interventions that may follow, can all lead to the development of Post Traumatic Stress Disorder (PTSD) or C-PTSD, along with other mental health conditions.
Despite the fact that 1 in 4 people in the UK experience pregnancy or baby loss, stigma and silence can often mean families feel isolated in their grief, and for some, their resulting Post Traumatic Stress Disorder.
As such, we strongly support Baby Loss Awareness Week, which is held annually in October. It’s an opportunity for bereaved parents, family members and friends to commemorate the all-too-brief lives of their babies and pregnancies, knowing that thousands of other families around the world understand how they feel and will be doing the same. The week also presents the chance for people to talk openly about the subject of and raise awareness of how baby loss and pregnancy loss can lead to PTSD and C-PTSD.
Studies show, that on average, up to
- 29% of people who experience miscarriage go on to develop PTSD
- 21% of people who experience ectopic pregnancy go on to develop PTSD
- 64.5% of people who experience Termination for Medical Reasons (TFMR) go on to develop PTSD
- 30% of people who experience stillbirth have PTSD (even 5-18 years later)
- People who experience Sudden Infant Death Syndrome (SIDS) are 7 times more likely than the general population to develop PTSD
- 39% of mothers who experienced infant death go on to develop PTSD
- 15% of fathers who experienced infant death go on to develop PTSD
PTSD and C-PTSD may manifest itself in a number of ways, from sadness to nightmares, social withdrawal to flashbacks, physical sensations like nausea or trembling, to repetitive distressing sensations. Those affected may wonder why the loss happened to them, if they could have done anything to stop it, and can lead them to feeling guilty, ashamed or somehow responsible.
If you feel like you may be experiencing PTSD or C-PTSD following pregnancy or baby loss, the only way to know for sure, and get a formal diagnosis is to talk to a medical professional.
In the UK, this usually begins with a trip to your GP. They will ask about your symptoms, how you’ve been feeling, and perhaps ask a little about your trauma (if you feel comfortable discussing it).
If they suspect PTSD or C-PTSD, it’s likely they would then refer you to your local community mental health team for an appointment to get a full diagnosis and to discuss treatment options further. There are a number of mental health specialists you may see if you have PTSD or C-PTSD, such as a psychologist, community psychiatric nurse or psychiatrist.
Is there anything that can be done to help prevent PTSD following pregnancy and baby loss?
Early intervention is crucial in helping to prevent the onset of PTSD and C-PTSD symptoms. Good aftercare and grief counselling can be beneficial, particularly after traumatic cases. Although pregnancy and baby loss can feel like a very taboo subject, speaking out– to doctors, friends and family – can all help to make those suffering feel less alone, and also help to alleviate the onset of any mental health problems.
For GPs and pregnancy units, it’s important they are trained to look out for these symptoms, and to also practice empathy and understanding when meeting people (and their partners) who have experienced pregnancy or baby loss. People who have had clinical depression prior to a pregnancy loss are statistically more likely to develop PTSD or C-PTSD, and therefore extra attention should be paid to how they are coping. Likewise, those who experience more than one pregnancy loss are at an increased risk of developing PTSD or C-PTSD, and this too should be acknowledged.
It’s important to remember that PTSD and C-PTSD are treatable conditions, even many years after the event occurred, so it’s never too late to seek help. NICE guidance from 2018 recommends the use of trauma focused psychological treatments for PTSD and C-PTSD in adults, specifically the use of Eye Movement Desensitisation Reprocessing (EMDR) and trauma focused cognitive behavioural therapy (CBT)
How to Support Baby Loss Awareness Week
There are several ways that you can support Baby Loss Awareness Week, whether publicly or privately but it is important to remember that this week may be challenging for anyone affected by pregnancy or baby loss. Please be gentle with yourself and look after your needs.
At the end of the week, you may like to take part in the annual International Wave of Light. This is when people around the world light a candle or candles at 7pm local time in memory of the baby or babies they have lost. Photos of these candles on social media create a wave of light that spreads across the globe. You can join this virtual wave of light by adding your photo on the night, with the tag #WaveofLight.
For more support and information, you can visit:
- The Ectopic Pregnancy Trust
- What is baby loss awareness week?
- ORIGINAL RESEARCH OBSTETRICS| VOLUME 222, ISSUE 4, P367.E1-367.E22, APRIL 01, 2020 Posttraumatic stress, anxiety and depression following miscarriage and ectopic pregnancy: a multicenter, prospective, cohort study, Jessica Farren, PhD, Maria Jalmbrant, DClinPsy, Nora Falconieri, MSc, Laure Wynants, PhD, Dirk Timmerman, PhD, Tom Bourne, PhD, December 13, 2019 DOI:https://doi.org/10.1016/j.ajog.2019.10.102
- Christiansen DM. Posttraumatic stress disorder in parents following infant death: A systematic review. Clin Psychol Rev. 2017 Feb;51:60-74. doi: 10.1016/j.cpr.2016.10.007. Epub 2016 Oct 28. PMID: 27838460.
Photo by thevibrantmachine
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Treatments for PTSD
It is possible for PTSD to be successfully treated many years after the traumatic event occurred, which means it is never too late to seek help. For some, the first step may be watchful waiting, then exploring therapeutic options such as individual or group therapy – but the main treatment options in the UK are psychological treatments such as Eye Movement Desensitisation Reprogramming (EMDR) and Cognitive Behavioural Therapy (CBT).
Traumatic events can be very difficult to come to terms with, but confronting and understanding your feelings and seeking professional help is often the only way of effectively treating PTSD. You can find out more in the links below, or here.