Baby Loss Awareness Week serves as a time to acknowledge and remember the many families who have experienced the profound loss of a baby, either pre- or post-birth. This week offers a space to reflect, raise awareness, and provide support to those navigating the complex and often isolating journey of grief.
Grief after losing a baby is not a temporary state but an evolving emotional experience that can have lasting effects on mental health. And it’s an emotional state that can impact the entire family. Often, the grief extends far beyond the initial mourning period, manifesting in waves, reignited by significant anniversaries or life events.
As healthcare professionals, it’s crucial to recognise that the emotional impact of baby loss is multi-layered, requiring compassionate, long-term mental health support. In this blog, we explore the enduring nature of grief, how it shapes the mental wellbeing of families, and why ongoing, personalised care is essential in helping families navigate this unimaginable loss.
Grief and mental health: beyond the first year
For many families who have lost a baby, grief is not something that follows a clear or predictable path. Most people experience a period of numbness, guilt, and/or anger – but these feelings fade over time, and it’s possible to then move forward1. However, for some, these feelings don’t pass and can become more debilitating as time goes on. When individuals are unable to move through the final stages of grief more than 12 months after the event, this is known as complex grief, complicated grief, or persistent complex bereavement disorder1. Here, painful emotions are so severe that the challenges in recovering from the loss are so persistent that they struggle to resume their own life1. Complex grief may include self-isolation, feelings of depression or despair, or like one cannot keep living1.
In the immediate term after a loss, many symptoms of normal grief are the same as those of complicated grief1. However complex grief is distinct. It affects around 7% of all bereaved people2. Research shows that risk factors include personal mental health history, the suddenness of the loss, and external factors such as anniversaries and milestones1. Studies have also shown that women are at increased risk, especially as they age1. For example, for women aged 45 and older – particularly those who have experienced previous pregnancy loss – are at an elevated risk; with up to 75% experiencing complex grief3-4. Research has also showcased how complex grief is more common when parents experience a sudden loss5.
Grief is often explained in stages, which now encompass seven phases6:
- Shock – Initial disbelief or emotional numbness following a loss.
- Denial – Struggling to accept the reality of the loss, creating an emotional barrier.
- Anger – Directed toward external factors, family members, or even oneself.
- Bargaining – Imagining scenarios where the loss could be undone, often accompanied by guilt.
- Depression – A deep sadness, withdrawal from activities, and feelings of hopelessness.
- Testing – Beginning to seek ways to cope and process the loss.
- Acceptance – Coming to terms with the new reality, while still feeling the pain of the loss.
For those experiencing the impacts that baby loss can have, these stages may not occur in a neat sequence, and can extend over years. Triggers such as anniversaries, due dates, and familiar places can reignite sorrow, contributing to the lasting effects of complex grief1. These ongoing reminders make grief a persistent part of life, sometimes becoming overwhelming.
Healthcare professionals can help identify when normal grief evolves into complex grief and when families might require mental health support to manage the long-term emotional impact of baby loss.
Ripple effects: how baby loss impacts the entire family
The grief from baby loss doesn’t stop with the parents; it ripples through the wider family, affecting siblings, grandparents, and even future generations. The emotional toll is shared, with each family member experiencing their own version of grief.
For grandparents, the loss is often compounded by what is referred to as ‘double grief’ – mourning not only the death of their grandchild but also witnessing the immense pain their own child endures7. Research shows that grandparents experience a compound grief, marked by both physical and psychological effects, including symptoms of disbelief, anxiety, and even thoughts of suicide8. The death of a grandchild can also have profound impacts on grandparents’ mental and physical health, with increased stress leading to conditions such as hypertension, angina, and even cancer9. Grandparents often feel acutely aware of their own mortality, heightening their sense of loss, especially when they feel there isn’t enough time left to fully process their grief10. However, it is the emotional bond they shared with their grandchild, regardless of how often they saw them, that can deeply influence the intensity of their grief10.
Siblings, too, carry their own version of grief, which can be misunderstood or overlooked11 and have a lasting impact on their future mental wellbeing12. Children’s grief manifests differently from adults’, frequently showing up as behavioural changes, emotional outbursts, or separation anxiety11, and they may not only mourn the loss of a baby brother or sister11 but also experience the emotional withdrawal of their grieving parents13 – too, experiencing a form of ‘double loss’. This can have lasting effects and make their grief even more complex.
The impact of baby loss can also transcend generations in a phenomenon known as transgenerational grief. Families who experience loss may pass on aspects of their grief to future generations, shaping their views on pregnancy and parenting14. In some cases, children born after the loss of a sibling may inherit elements of their parents’ trauma15. Studies suggest that this transmission can even occur at a genetic level, affecting the emotional wellbeing of subsequent generations14,16, even before verbal communication occurs15.
Mental health challenges associated with untreated complex grief
When left untreated, grief can evolve into long-term mental health conditions such as PTSD, depression, and anxiety17-22, with effects surfacing months or even years after the initial loss18. The grieving process, while natural, can sometimes spiral into persistent mental health challenges, making it essential to monitor and provide continued support.
Untreated complex grief can manifest in different ways, such as post-traumatic stress disorder (PTSD), especially for parents who have experienced traumatic loss19. PTSD can prevent the natural grieving process, causing re-experiencing symptoms like intrusive memories, avoidance of reminders, and hyperarousal, making it difficult for parents to move forward19. It can also result in bereaved parents experience difficulty sleeping, engaging in riskier behaviours, and feeling more on edge or irritable19.
For some, grief can lead to long-term psychiatric complications such as major depression; especially in those with preexisting vulnerabilities20. While grief is complex – and involves both positive and negative emotions – major depression conversely tends to be more pervasive, characterised by an inability to experience self-validating or positive feelings, leaving individuals emotionally trapped in their loss20.
Anxiety is also frequently associated with complex grief, as the loss of a child can trigger significant anxiety that persists long after the initial grieving period21. If symptoms of anxiety linger beyond 6 to 12 months, it may indicate an anxiety disorder associated with complex grief21-22. This anxiety can derail the natural mourning process and prolong the emotional suffering21.
Moreover, many grieving parents, especially those in high-profile roles, may mask their struggles, attempting to maintain a sense of normalcy for the sake of their surviving children, jobs, or societal expectations. This hidden battle often exacerbates their mental health challenges, making it crucial for professionals to recognise these signs early and intervene.
The role of healthcare professionals in long-term mental health care
Healthcare professionals, including GPs, psychiatrists, and therapists, play a vital role in identifying when grief progresses into complex grief or trauma. Early recognition is crucial, as complex grief can manifest long after the initial loss, leading to prolonged emotional distress, anxiety, or even PTSD17-22. By recognising the signs, healthcare professionals can ensure timely intervention and referrals for appropriate mental health support.
However, grief is not a linear process. Continuing care is essential as emotions can resurface, even after the initial grieving period23. As time passes, triggers such as anniversaries or life events can reignite the pain initially felt23, reminding families of their loss. Healthcare professionals should ensure that bereaved families have ongoing support, as the mental health consequences of complex grief and associated conditions, like depression and anxiety, often require long-term care.
Mental health treatment for bereaved families is a journey, not a one-time solution. Professionals need to monitor the evolving mental health needs of families, offering compassionate and tailored care that extends beyond initial grief counselling, ensuring lasting wellbeing.
The importance of flexible, at-home mental health support
Healing from baby loss is an emotionally intense and deeply personal journey, one that is often best navigated within the comfort of one’s own home. At-home mental health care provides grieving families the unique opportunity to integrate healing into their daily lives, surrounded by familiar comforts such as family, pets, and their personal space. Undergoing treatment in the home environment, where potential triggers may already exist, further allows patients to learn how to manage their grief in the context where they may struggle the most. Research shows that avoiding reminders of the loss can prolong denial and deepen emotional pain24. By staying in their home, bereaved parents can face their grief head-on, fostering more sustainable healing.
A multidisciplinary team approach – combining therapists, psychiatrists, and mindfulness experts – ensures personalised care for bereaved families, especially when treated in their own homes. This team-based care helps address the complex emotional, psychological, and practical challenges that arise following baby loss, providing ongoing support as families navigate their unique grieving process.
Recognising the need for long-term support, services like Orchestrate Health offer personalised at-home care, tailored to each family’s needs. Healthcare professionals play a critical role in referring families to at-home mental health services, ensuring optimal outcomes by providing timely interventions when they spot complex grief emerging.
References
- https://www.mayoclinic.org/diseases-conditions/complicated-grief/symptoms-causes/syc-20360374
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3384440/
- https://journals.lww.com/jonmd/abstract/2011/08000/dilemmas_related_to_pregnancy_loss.12.aspx
- https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/j.1471-0528.2011.03137.x
- https://journals.sagepub.com/doi/full/10.1177/00302228231170417
- https://www.medicalnewstoday.com/articles/grieving-process
- https://www.magonlinelibrary.com/doi/abs/10.12968/ijpn.2011.17.4.170
- https://www.sciencedirect.com/science/article/pii/S1871519219302355#bib0125
- https://link.springer.com/article/10.1007/s10900-015-0018-0?utm_source=getftr&utm_medium=getftr&utm_campaign=getftr_pilot
- https://www.childbereavementuk.org/when-a-grandchild-has-died
- https://www.ucc.ie/en/pregnancyloss/researchprojects/impactofperinataldeathonsiblings/
- https://www.tandfonline.com/doi/full/10.1080/15325024.2021.2007650
- https://www.tandfonline.com/doi/full/10.31887/DCNS.2012.14.2/akersting
- https://www.psychologytoday.com/us/blog/grief-and-the-replacement-child/202111/born-into-a-mourning-family-life-after-the-loss-of-a
- https://pubmed.ncbi.nlm.nih.gov/2751006/
- https://pubmed.ncbi.nlm.nih.gov/11708051/
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9937061/
- https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(02)09410-2/abstract
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10160000/
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2691160/
- https://link.springer.com/article/10.1007/s11920-012-0270-2
- https://www.healthcentral.com/condition/anxiety/anxiety-complicated-grief
- https://pathwayshealth.org/when-grief-shows-up-sometimes-years-later/
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9937061/
