Taking time to reflect this Baby Loss Awareness Week

Emily Andrews, Chartered Legal Executive in our Clinical Negligence team explores the complexities of baby loss and how our expert solicitors, alongside supporting charities, can help during such a traumatic time.

Each year, we come support those who have been affected by baby loss and remember those babies who have sadly passed away on baby loss awareness week. Baby loss can be a terrifying and devastating experience. Taking time to stop and support those who have been through such horrific experiences, to acknowledge the hardships faced, and to come together to cherish the memories of those babies who have been lost, is vital to making sure these families do not feel alone.

According to Tommy’s charity, around 50% of adults in the UK say that they, or someone they know, has experienced baby loss. Despite this being so prevalent, this is still often not spoken about, meaning the full impact this loss has on families can go under appreciated.

Those who experience this incredibly difficult loss can feel confused whist also dealing with a grief that can feel completely overwhelming. For families and friends, it can be difficult to know how best to support them, what it is they need to help them try to find peace, and to ease the burden of carrying such heavy grief, in some small way.

Baby loss awareness week hopes to promote having a more open forum, to discuss baby loss with those that have been directly affected, to recognise how painful this is for all those who experience it, and to listen to the stories of those brave enough to tell us, to treasure the memories of those babies taken too soon. The hope is this discussion helps others who have similar experiences to feel less alone, to know that others have been through this, and help them find some peace after baby loss.

What does baby loss mean?

Baby loss is a broad term referring to the death of a baby at any stage of pregnancy, or shortly following birth. There are many different types of loss which demonstrates the scope of these devastating events and acknowledges that baby loss of any sort is valid, traumatic, and worthy of being recognised.

One of the earliest types of baby loss is a chemical pregnancy, this is where there has been a positive pregnancy test which sadly ends at around five weeks gestation, before the embryo could be seen on an ultrasound scan.

A miscarriage is the loss of an embryo and is considered an early miscarriage before 13 weeks, or a late miscarriage from 13 weeks to 24 weeks. An ectopic pregnancy is where the fertilised egg implants outside of the uterus and this will often result in loss of pregnancy and sometimes emergency surgery.

A molar pregnancy is where the fertilised egg grows rapidly and abnormally which will result in baby loss. Still births relate to loss of a baby after 24 weeks gestation. A termination for medical reasons (TFMR) is where a pregnancy is ended due to medical conditions effecting either the baby or mothers’ health.

Neonatal death is the death of a baby within the first 28 days of life. Sudden Infant Death Syndrome (SIDS) the sudden and unexpected death of a baby under one year old.

Whilst the loss of a baby is a devastating experience, often the events surrounding the loss can be very traumatic as well, such as emergency surgery, difficult decisions regarding how best to proceed, or ongoing and prolonged side effects for the mother. The grief can be profound, but this sense of trauma and fear can lead to extreme emotional distress, isolation, and significant confusion.

Getting support

For families that sadly have experienced baby loss, there are many different routes to find further support. Most maternity units should have bereavement midwifes who will offer immediate emotional and practical support for families on their next steps following baby loss. If there is any practical aftercare for mothers, this should be clearly explained and there should be provision of community contacts should the family want further support beyond this service.

Families who have experienced baby loss should be offered, or advised how they can request, a birth debrief or bereavement review to meet with the clinicians involved to discuss the care provided and to ask questions. If there is any question as to the cause of death, the family may be offered a postmortem in order to answer some of these questions, if the family wish to consent to the same.

If any concerns are raised by staff, this could trigger a serious incident process in which the hospital will review the care provided and complete a serious incident report. Families may be told of the investigation, and if anything is found to have gone wrong there is a duty of candour to inform the families of the outcome, provide an apology and additional support if appropriate.

If a family has concerns themselves over what happened, or do not feel satisfied from the debriefing, they can look to contact the Patient Advice and Liaison Service (PALS) who can help to arrange meetings or escalate concerns for further review.

Mental health support

The emotional and mental health provisions differ between Health Boards and Trusts. Some will have dedicated perinatal mental health teams, some may have more general specialist mental health teams, and waiting lists can vary.

If this is something a family feels they can benefit from, they should discuss this with their bereavement midwife during follow-up, with their GP for onwards referral, or with the PALS department, to consider what sort of support is available. NHS talking therapies are also available for anyone who needs help with their mental health, including those who have suffered baby loss, and a GP can refer for this.

Support from baby loss charities

Many charities can assist with providing additional help for those who have experienced baby loss with support groups, online communities, memory boxes and, in some cases, they are able to provide some mental health support, including Tommy’s charity, Sands and Mind. These charities can be particularly helpful if the waiting lists for NHS therapies are particularly long, or if families feel talking to someone who has been in a similar experience could bring them some comfort.

A lot of the support provided by the NHS focuses on the mental health and recovery of mothers, but fathers and partners are also severely impacted by the trauma of baby loss. Whilst partners can still access NHS mental health services, this will not generally be offered by the NHS as it may be for mothers, and this will have to be sought independently with GP or self-referrals as outlined above. However, certain charities do provide specific support for partners and families, such as Daddys with Angels and Aching Arms.

We work closely with several charities and do our best to help support them through our own fundraising so they can continue to do the brilliant work they already do, such as 2wish which is an amazing charity who provide immediate and ongoing support for families who have been affected by the death of a child, including neonatal death and SIDS.

Your rights following baby loss

After a still birth, that is baby loss after 24 weeks, families have to register the stillbirth with the registry office. An appointment will be made to confirm the general details for the form and the parents will sign the stillbirth register. Once this is registered, parents can purchase a certificate of registration of stillbirth and a separate form will be provided to permit burial or cremation. In England and Wales, this must be registered within 42 days of the stillbirth.

Following registration of the still birth, a funeral can be arranged. In England, the Children’s Funeral Fund can help pay for some of the expenses, with burial or cremation fees being claimed directly by the funeral director if used, within six months. In Wales, burial and cremation fees have ended for children under 18, but families are entitled to receive a £500 contribution to the funeral costs. Families on certain benefits can also claim for a funeral expenses payment to further assist following a baby loss.

Since February 2024, bereaved parents in England can request for a “baby loss certificate” in memory of their baby if the pregnancy ended before 24 weeks. As of October 2024, this service was extended to all families who have experienced historic baby losses, regardless of how long ago this occurred. Families can request a baby loss certificate and there have been calls to extend this to Wales but, as of yet, this has not happened.

Employment rights following baby loss

In terms of parental rights, the law treats a stillbirth, that is baby loss if after 24 weeks or later, the same as a live birth for both maternity and paternity rights. This means that maternity leave up to 52 weeks with statutory maternity pay, and paid paternity leave up to two weeks.

Sadly, with baby loss before 24 weeks, there are no maternity or paternity leave entitlements, and employees will have to request sick or compassionate leave. However, the landscape is changing and baby loss is now being recognised by many employers, rather than being ignored or brushed aside as it may have done more traditionally.

Many employers are now offering additional policies of compassionate or bereavement leave which are beyond the scope of the statutory entitlement. This will be discretionary but is something that could apply. For those studying, there will often be an extenuating or mitigating circumstances policy which will allow for suspension of studies for exams or coursework without penalty, and this should be discussed with the school to arrange. Often schools will also have welfare and counselling teams or hardship funds which can provide additional advice with adjustments or support.

How we can help

If any families would like some help with asking for a debrief, requesting their medical records, or how to make a complaint, our clinical negligence team would be very happy to offer some initial advice. It is key that families are part of the discussion in their baby’s loss and feel that they have control in this situation.

This is something that can often feel difficult to achieve and some families can feel that they still do not understand what has happened or that their concerns have not been adequately addressed. It is vital that all families feel they have had their concerns heard and that they feel able to ask questions, or access further support, should they want to.

To help gather useful resources, we have developed a Bereavement Hub which gives guidance and support, helping families find the advice they need and navigate the practical matters that arise during such an incredibly difficult time. We also have experts who can help in all matters of bereavement who are happy to help.

We have also developed a Birth Injury Hub which helps families find the right resources and information when a mother or baby have suffered injury during pregnancy or birth, including those who have suffered with baby loss.

We stand together this Baby Loss Awareness Week with those who have been affected by baby loss, to support them during this most difficult time, and to help in spreading the message that these babies matter and, in honouring their memories, they are not being forgotten.