Sands Awareness Month

While many more people are aware of the pain of baby loss because of the work of Sands and other organizations, many people still have no idea and it remains a taboo subject.

Sadly, 15 babies die every day, before, during or shortly after birth in the UK. That equates to one baby every 90 minutes. In 2015, one in every 227 babies delivered in the UK was stillborn (that is, the baby died during pregnancy or birth any time from 24 weeks of pregnancy onwards). After decades of stagnation, the UK’s stillbirth rate is starting to fall. However it remains higher than other comparable countries and much more can be done to prevent these avoidable deaths. During SANDS awareness month, the charity is seeking to raise awareness of some of the causes of these tragic losses.

During the month of June, 450 babies will die, and the charity reveals some surprising facts about the cause of stillbirth and neonatal death. Contrary to common perception, major congenital anomalies (birth defects) account for fewer than 10% of stillbirths. There are well-documented risk factors for stillbirth, such as smoking and obesity, but babies at highest risk are those with poor growth that’s not picked up during pregnancy. These pregnancies are thought to be ‘low risk’ when actually the baby is at risk. In around one in three stillbirths the exact reason for the baby’s death is unclear and the death is described as ‘unexplained’. This is because the causes of stillbirth are not fully understood. One-third of stillborn babies – that’s around 1,200 babies every year – die after a full-term pregnancy (37 or more weeks).Every year, 500 babies die from an intrapartum-related event (that is, something that happened during labour). The 2010 West Midlands Confidential Enquiry into Intrapartum Related Deaths found evidence of substandard care in each of the 25 deaths it reviewed. In two-thirds of cases, different management would have reasonably been expected to have made a difference to the outcome.

The common factor in all of these cases is that the death of a baby has a profound and lasting impact on parents and the wider family. Following events in Mid Staffordshire, a review of 14 hospitals with the highest mortality noted that the focus on aggregate mortality rates was distracting Trust boards “from the very practical steps that can be taken to reduce genuinely avoidable deaths in our hospitals”. This was reinforced by the recent findings of the Care Quality Commission (CQC) report Learning, Candor and Accountability: A review of the way NHS trusts review and investigate the deaths of patients in England. It found that learning from deaths was not being given sufficient priority in some organisations and consequently valuable opportunities for improvements were being missed. The report also pointed out that there is more to be done to engage families and carers and to recognise their insights as a vital source of learning.

In March 2017 the National Quality Board (the body established to deliver high quality care for patients throughout the NHS and at the interface of health and social care) published the first edition of National Guidance on Learning from Deaths which aims to kick start a national endeavor on this front. Its purpose is to help initiate a framework and standardized approach for NHS Trusts and NHS Foundation Trusts on Identifying, Reporting, Investigating and Learning from Deaths in Care.

Reena Patel from Leicester suffered the loss of Mayan, her first baby. Describing the events leading up to this tragedy, Reena said

“I always felt fear. People would talk about how they could feel their baby kicking hard. But I only felt flutters. I raised my concerns with the midwife. She put me at ease saying some babies don’t kick hard. I wasn’t offered any extra scans.

Then one morning, at 32 weeks, I woke up feeling odd. I hadn’t felt my son move. I went to the hospital. It never occurred to me my son would be dead. The midwife couldn’t find a heartbeat, that was when they told me. I was sent home for two days and then I had to give birth to him. After Mayan was born I was put in the bereavement suite for five hours. My husband bathed and dressed our baby. He looked perfect, but I just wanted to go home. I didn’t want Mayan to have a post-mortem but I did send my placenta for post-mortem. The post-mortem results said my placenta was too small. I always felt my baby was very small but the midwives never questioned the size of my bump. The midwives measured me with tape but I wasn’t offered any kind of scan. I’ve since found out that if I’d had later scans, Mayan’s difficulties in the womb would have been spotted. He could have been born earlier and lived in an incubator. He could have survived.” (BBC Panorama: Born Sleeping 30.09.2014).

Whilst baby loss has been something of a taboo subject in the past, more recently progress has been made in breaking the silence, but there is still a long way to go. Sands Awareness Month is an opportunity to give a voice to anyone who has experienced the death of a baby; to highlight the fact that over 100 babies will die each week during the month of June (and throughout the year) and to raise vital funds so that Sands can continue to support families, work to improve bereavement care and fund, promote vital research and campaign for a world where fewer babies die.

Wolferstans has a specialist medical negligence department which has expertise in advising parents in such tragic situations. If you have a child who died or was injured as a consequence of inadequate medical care and would like to have a free initial discussion -without any obligation- please contact please contact Jodie O’Connor on 01752 292360 or email her at jo’connor@wolferstans.com