Why do babies die?

Members of the British Stillbirth and Neonatal Death charity SANDS, including Joshua Titcombe's parents James and Hoa, will visit Parliament today to present a major new report Preventing Babies' Deaths: what needs to be done.

The report is a deeply moving and deeply distressing account of why babies die and what can be done to prevent those deaths.

In 2010, 4,110 babies were stillborn; 1,850 babies died in the first hours or days of their lives, and another 507 babies died between one and four weeks old.

Contrary to common perception, stillbirth is not a rare event: one in every 200 babies is stillborn (a death after 24 weeks gestation).

To my mind, the most disturbing of the many distressing findings is that many of these deaths could have been prevented with appropriate obstetric care. In contrast to the beliefs of many people, these babies are not "meant" to die.

It is a common misconception that all stillbirths are unavoidable tragedies where something is irreversibly wrong with the baby.

In fact over 90% of babies who are stillborn have no congenital abnormality; around a third of stillbirths are unexplained (in other words perfectly formed, normal-sized babies); and a further third are also perfectly formed but growth restricted.

Moreover:

... Around 500 babies die every year because of a trauma or event during birth that was not anticipated or well managed. These deaths, when they occur at term, should never happen and almost always could be avoided with better care.

The report offers a startling fact:

Today it is rare to lose a baby in a high-risk pregnancy. But when it comes to stillbirth the so-called 'low-risk' women who in fact have high-risk babies are being missed.

The report itself is filled with tragic stories of low risk pregnancies where providers insisted that a low risk pregnancy was "normal" in the face of mounting risk factors and actual clinical deterioration of babies.

In the wake of these preventable deaths, providers attempt to hide what actually happened.

Joshua’s avoidable death - the true causes of which would never have come to light without the courageous persistence of his father - not only highlights extreme failures of care, it also emphasises the unwillingness of some Trusts to learn in an open and honest way from those mistakes, thereby risking repeating these failures in the future.

The Titcombes’ case is an extreme example of poor care but it is also just the tip of the iceberg. Most bereaved parents do not have the leverage ... to pursue answers as to whether the quality of the care they received contributed to their baby’s death. The death is generally presented to them as a rare and regrettable, but unavoidable, tragedy. Yet we know that substandard care plays a role in many perinatal deaths.

In a national confidential enquiry into stillbirth in 2000, sub-optimal factors were found to have contributed to the death in three quarters of cases with failures in identifying problems (especially poor growth), in intervening and in communication.
In more recent regional confidential enquiries into the deaths (before or shortly after birth) of 65 normally formed babies, carried out in 2008/9 by the West Midlands Perinatal Institute, it was concluded that 54% could have been avoided
with better care.

The key to preventing these deaths is auditing the deaths and reviewing individual deaths to determine what, if anything, could have been done differently. In a move that is incomprehensible, the Britain has STOPPED counting the deaths, let alone investigating them:

If deaths are not counted, in official terms they as good as disappear. Yet the UK’s national audit programme, the Clinical Outcome Review Programme (CORP) Maternal and Newborn Health, which is tasked with collecting perinatal mortality data, has been suspended since April 2011. In other words the 17 babies who die today will not go into any kind of national audit to help understand why babies die and how to improve care.

Evidence shows that audit can save lives. Without facts on where and why deaths are happening, or any review of maternity units’ performances on perinatal mortality, the potential and impetus to do something about the problem fades. In a
health care system driven by outcomes this situation is unacceptable.

The official panel who reviewed the CORP programme recommended that it recommence by April 2012, but that is not certain. Meanwhile, there is grave concern, and a sense of disbelief, that two or more years of vital perinatal mortality
data have potentially been lost.

In addition, though parents who experienced stillbirth or neonatal death regret that they were not more aware of the possibility, providers view the provision of that information as 'scaremongering."

"You can't make informed decisions if you're not informed," says [a father]. “We asked the Head of Midwifery to review the information they give parents but she said, ‘We don’t want to scaremonger parents’."

Is it scaremongering to tell prospective parents of the risks, however relatively small, of their baby dying before or soon after birth (after all women are expected to assess information about Down’s syndrome and cot death) or is it giving them the power to make truly informed choices about their own health and pregnancy care?

The report concludes with substantive proposals for action and models to guide providers and government officials in making necessary changes.

Preventing Babies' Deaths: what needs to be done is a deeply affecting and deeply distressing review of maternity care in the UK. A press release summarizing the findings is available on the SANDS website. The full report will be available tomorrow; I urge everyone to download and read it. It is impossible not to be moved and angered. Hopefully, Parliament and health officials will take action in response.