neonataldeaths Archives

The death of a child, as is the death of anyone close to you, is devastating news for anyone, especially when that devastation happens during pregnancy.

This is something that both my Son Frank Jnr. and Daughter-In-Law Zoe and Daughter Debbie have sadly had to experience.

Frank and Zoe both had tremendous help and support from Sands. In October 2023 they went Sober For October in aid of Sands. They hoped to raise £200 for the Charity Sands and to date have raised £220. WELL DONE to both of them. You can still donate to this here.

Please help this charity in any way you can. You can donate to Sands below.

Sands logo.

About Sands

Sands works to support anyone affected by pregnancy loss or the death of a baby.

They also carry out vital work to improve maternity safety through targeted research, campaigning for change, working with the government and reducing inequalities in healthcare to save babies’ lives.

Every day 13 babies die before, during or shortly after birth. Sands works to understand where and why babies die and why some women and babies are more at risk than others. This must change.

Their vision is for a world where fewer babies die and when a baby does die anyone affected receives the best possible care and support for as long as they need.

The charity was founded by bereaved parents in 1978 who found that there was no access to support following the deaths of their babies. Since then Sands has grown, but parents who have experienced baby loss are still at the heart of everything they do.

They are made up of staff and volunteers who work together to ensure that anyone affected by the death of a baby has access to compassionate, experienced support. They offer one-to-one and group support through their various bereavement support channels, local groups and Sands United football teams, their family and remembrance events and they provide virtual and physical bereavement resources such as memory boxes.

They save babies’ lives by amplifying the voices of bereaved families and healthcare professionals, campaigning for change in policy and practice, and funding research to understand why babies die.

Sands exist to reduce the number of babies dying and to support anyone affected by the death of a baby, before, during or shortly after birth, whenever this happens and for as long as they need support.

Babies are dying every day. Currently, in the U.K., 13 families a day suffer the heartbreak of losing their baby before, during or shortly after birth. That’s around 4,500 babies a year, and at least 15% of pregnancies end in miscarriage. These numbers are shocking and show the scale of the problem.

Currently, far too many babies die without scientists, doctors, midwives, or their own parents understanding why. That’s why they believe research is vital in improving their understanding of how to save babies’ lives and using that evidence to drive changes in maternity policy and practice.

For more than 40 years, Sands has been there for anyone affected by pregnancy and baby loss to offer understanding and comfort through its Freephone helpline, mobile app, online community and resources, and locally through a UK-wide network of around 100 regional support groups.

Sands works in partnership with health care professionals, trusts and health boards and offers a range of training programmes and bereavement care resources to ensure that every bereaved parent and family receives the best possible care wherever they are in the U.K.

Sands supports and promotes research to better understand the causes of baby deaths, improve maternity safety and save babies’ lives. The charity also raises awareness of baby loss and works with governments, key influencers and other stakeholders to make reducing the number of babies dying a priority nationally and locally.

Click here to meet their staff.

Click here to meet their trustees.

Click here to meet their ambassadors.

You can read more about what great work they do with lots more information and links to click by going to their website here.

This section contains information about the statistics around baby deaths in the UK, the national maternity reports that have highlighted the change that needs to happen and links to our policy and campaigns work to reduce the number of baby deaths in the U.K.

Their Work

Research Projects

See all research projects here.

Inequalities And Stillbirth In The U.K.

What does existing research say about how to reduce stillbirths in disadvantaged families?

Read supported research studies on stillbirth here.

Sands funded a review of inequalities and stillbirth. Potentially avoidable inequalities mean that certain groups of people are more likely to experience the devastation of stillbirth.

The research team found evidence of links between inequalities and stillbirth as long as 70 years ago. However, they found that there was no research studying how to reduce stillbirths in disadvantaged families in the U.K.

They suggest a specific research forum is required to lead the development of research and policy in this area, which can use different research perspectives and address the overlaps between different policy areas.

Read more about inequalities and stillbirth in the U.K. here.

Parents And Neonatal Decisions Study

Improving communication during conversations about limiting life-sustaining treatment in neonatal intensive care.

Read supported research studies on Healthcare professionals’ experiences here, parents and families experiences here and neonatal death here.

One of the most difficult decisions parents and doctors face in a neonatal unit is moving from full intensive care to palliative care. The research team know from parents that these conversations can remain with them for the rest of their lives.

How doctors handle these situations is usually based on their own experience or on training that involves sitting in on conversations more experienced doctors have with families. In a survey of doctors in 2014, most wanted more training in these conversations and breaking bad news, the team would like to improve the way these conversations are had by training doctors.

The team have recorded real conversations between parents and doctors and is analysing them. The findings will then be used to create training to help doctors understand, communicate and support parents during these difficult conversations.

The parent advisory group, research team and Sands have also created a resource to support doctors having end-of-life conversations with parents. The Parent advisory group share their tips about communicating sensitively and clearly and supporting the teams’ wellbeing. The resource can be found at the end of this page.

You can find out more about the impact of this research on training doctors here.

Read more about parents and neonatal decisions study here.

Prediction And Prevention Of Perinatal Death

Read supported research studies on stillbirth here and neonatal death here.

Background:

This project aims to find a way of identifying babies at high risk of death in the womb or shortly after birth so that they can be monitored more closely and delivered early if necessary. Effective preventive treatment could also lead to a reduction in the risk of death. Stillbirth is a tragedy suffered by the families of 1 in 240 babies in the U.K. There has been a slow improvement in this figure in the past two decades, and the UK still lags in 24^th place out of 49 high-income countries. Most stillbirths occur in late pregnancy: approximately one-half after 34 weeks. They urgently need an effective way of identifying these babies, in order to implement appropriate targeted management to reduce their risk. Also, women whose babies are shown to be at low risk can be reassured, and their schedule of antenatal visits and scans tailored accordingly. In addition to the obvious clinical benefits to the baby and mother, this would result in significant financial savings and allow focus on those most in need.

Why is the research needed?

There is no single test that can accurately predict the risk of stillbirth in pregnant women. Current national and international guidelines provide a list of risk factors based on clinical characteristics of the mother to assess their risk, but these have limited accuracy. Many studies have found an association between abnormal biochemical tests and stillbirth. Abnormal ultrasound findings of blood flow to the womb have also been shown to have some accuracy in identifying mothers at risk. Unfortunately, these individual tests do not perform sufficiently well on their own for them to be used routinely.

Perinatal death includes stillbirth and deaths within the first week of life, and it affects 1 in 166 babies in the U.K. Existing evidence synthesis projects, where the published data from a number of similar studies are pooled and analysed together, on perinatal death have been unable to provide clear conclusions on the performance of the tests or prevention strategies.

What will the researchers do?

For this project, Dr Khalil’s research team will obtain the individual data of all participants in relevant studies, through the International Stillbirth Collaborative Network. The team has established a similar network comprised of more than 50 researchers, with access to data from over 500,000 women to date. Access to the individual data will allow them to take into account the many different factors that predict the risk of perinatal death and develop a scoring system (prediction model) to provide women with their individualised risk. As part of the project, the team will test the performance of this scoring system to ensure that it is reliable.

The plan is to also develop a tool or set of interventions to help prevent stillbirth, and this will be tested to ensure it is helpful for a large population of women. Overall, the scoring system and preventive tool will allow doctors and midwives to tailor the care, monitoring and any possible intervention for each woman.

A third part of the project will involve drawing up an evidence-based list of important outcomes (such as whether the stillbirth occurred during the pregnancy or labour, early neonatal death and late neonatal death) which researchers should include in future studies aiming at preventing perinatal death. The team will develop this list by working together with the experts in stillbirth, patient representatives, and the international initiatives Core Outcome Measures in Effectiveness Trials and Core Outcomes in Women’s Health. This should improve the design and reporting of future studies, and make the results more useful.

What they expect from the study:

A scoring system to identify a woman’s individual risk of perinatal death.

A set of interventions appropriate for women with higher risk.

A set of definitions for use in future research looking into perinatal death.

Research Papers:

Can risk prediction models help us individualise stillbirth prevention? A systematic review and critical appraisal of published risk models can be read here.

Additional Information:

The lead researcher is Dr Asma Khalil, St George’s University of London.

Sum awarded:

£129,012.

Other funding:

None.

Duration of study:

15 months from the 1st of December 2017 to the 28th of February 2019.

Find out more about what they do and their plans for the future in their research strategy here.

Click here to see all the services they offer.

Their Finances

Click here to view all of Sands finances to date.

Jobs Vacancies

Click here to see the latest job vacancies at Sands.

Causes Of Baby Death

Click here to read more about causes of baby death.

There’s a wide range of reasons why babies die. Causes of stillbirths (death before birth) and deaths of newborn babies (neonatal deaths) are looked at separately as different problems are more common in each group.

Stillbirths

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 fewer than one in ten stillborn babies. For one third of stillborn babies, the cause of death is not known. For another third, the cause of death is attributed to problems with the placenta.

Neonatal Deaths

More than 40% of neonatal deaths are linked to prematurity or low birthweight, both of which increase the likelihood of serious health problems, including lung and gut conditions. Another third of neonatal deaths are caused by genetic conditions present from birth.

The MBRRACE-UK data in the two charts above only includes stillbirths and neonatal deaths at 24 weeks gestation or later, therefore these figures for causes of death do not include earlier stillbirths and neonatal deaths. The causes of death shown on the charts are explained below.

Other Causes Of Stillbirth And Neonatal Death

(1) Infection. This refers to deaths caused by infections that directly affect the mother, baby, or the environment within the womb, for example, Group B Strep.

(2) Intrapartum. This includes deaths that happen during or shortly after birth due to complications or issues that arise during labour, such as when the baby does not receive enough oxygen during birth (birth asphyxia).

(3) Congenital anomaly. This includes genetic anomalies present before birth, such as congenital heart defects.

(4) Fetal. This includes deaths caused by any condition or event affecting the unborn baby, except for congenital anomalies, such as the baby being smaller than expected in the womb.

(5) Cord. This refers to deaths caused by problems with the umbilical cord, such as the cord wrapping around the baby’s neck.

(6) Maternal. This refers to health conditions in the mother that existed before pregnancy, were made worse by pregnancy, or arose because of pregnancy, for example, pre-eclampsia.

Sands And Tommy’s Joint Policy Unit

In 2022, the Sands and Tommy’s came together to form a Joint Policy Unit. Together we are focussed on achieving policy change that will save more babies’ lives during pregnancy and the neonatal period and on tackling inequalities in loss so that everyone can benefit from the best possible outcomes.

The Sands and Tommy’s Joint Policy Unit is focused on achieving policy change so that fewer babies die, and inequalities in baby loss are eliminated.

About Sands And Tommy’s Joint Policy Unit

In 2022, the Sands and Tommy’s came together to form a Joint Policy Unit. Together we are focussed on achieving policy change that will save more babies’ lives during pregnancy and the neonatal period and on tackling inequalities in loss, so that everyone can benefit from the best possible outcomes.

Report: Better Board Oversight Needed To Save Babies’ Lives

The safety and quality of maternity and neonatal services are the responsibility of the board in each NHS Trust. However, board oversight has been highlighted as an issue in successive inquiries and reviews.

We reviewed publicly available board papers and minutes for seven NHS Trusts in England to analyse whether the information presented to boards, the process for review, and actions taken enabled boards to deliver on this responsibility.

Our findings across these three areas raise questions about boards’ ability to have a full understanding of the performance of maternity and neonatal units under their direction under the current system.

Click here to download the report in PDF format.

Click here to read their blog on HSJ.

Saving Babies’ Lives 2023: A Report On Progress

The Sands and Tommy’s Joint Policy Unit is focussed on achieving policy change so that fewer babies die, and inequalities in baby loss eliminated.

This report brings together data from different sources for the first time to show the extent of pregnancy loss and baby death across the UK. Outlining recent trends and evidence, as well as gaps in our understanding, it sets out key areas where action is required to reduce rates of miscarriage, stillbirth, preterm birth and neonatal death.

This is not a one-off report – we will continue to provide independent oversight of progress, and are committed to working with government and policymakers to secure change that will save more babies’ lives in the future.

Click here to download the summary report in PDF format.

Click here to download the full report in PDF format. Please note: The stillbirth rate and extended perinatal mortality rate for Wales were updated in August 2023. In the original publication in May 2023, the infant mortality rate for Wales was incorrectly entered as the stillbirth rate.

Click here to download the infographic in PDF format.

For more information about the Joint Policy Unit, please click here to contact Robert Wilson, Head of the Joint Policy Unit.

Watch And Listen

Sands have worked on a number of special projects and collaborations highlighting the impact of baby loss. Click here to see all of them.

Lewis Capaldi’s Song For Rob And Charlotte Allen

Lewis Capaldi’s released a video for his song Pointless that tells Rob and Charlotte Allen’s moving and inspirational story.

Sands was so very grateful to Lewis and his team at E.M.I. for wanting to share the story behind Sands United and helping more people find out about their work saving babies’ lives and supporting bereaved families like Rob and Charlotte’s.

Since Rob set up that first team in Northampton, Sands United has grown to become a unique way for dads and other bereaved men to come together through a mutual love of sport. Each team provides its members with peer support, and a safe space to talk about their grief if and when they’re ready.

Here is what Sands United founder and Patron said,

“When our baby Niamh died our world fell apart. I really struggled to find the words to talk about how I was feeling, and I now know that I’m not alone in feeling this isolation. Few experiences can compare to the trauma and pain of losing a baby. Many people don’t get the support they need or even know that there is support out there.

“Setting up the first Sands United FC was a lifeline for me, and it has now helped hundreds of other men affected by pregnancy or baby loss. From the moment we put on our shirts and step out onto the pitch with our babies’ names over our hearts, every Sands United member knows they are understood and that everyone in that team is there to support them.

“I can’t say a big enough thank you to Lewis Capaldi for gifting us this opportunity to share our family’s story and show how Sands will continue to help so many bereaved people to survive. All our babies are always loved and never forgotten. Life after loss can sometimes feel pointless but I want anyone touched by this grief to know there is also hope.”

Support Group

Click here to find out where your local Sands support group is.

Get Involved

Their work is totally dependent on their supporters. Join them and share their vision of a world where fewer babies die, and where every bereaved family gets the care and support they need, when they need it, for as long as they need it.

Play a role in helping them carry out vital work to improve maternity safety and save babies’ lives.

Without the generosity of people like you, their work would not be possible.

There are lots of ways for you to get involved and support them, from volunteering at an event, to campaigning for better services. Click here to find out more information.