Stillbirths and Infant Mortality

Phillip Lee Excerpts

Wednesday 26th March 2014 Westminster Hall

[Tracey Crouch (Chatham and Aylesford) (Con)]

It is a pleasure to serve under your chairmanship this afternoon, Mr Davies, although there is certainly no pleasure in the subject matter of this debate. The issue of stillbirth and infant mortality is a complete and utter tragedy for parents who lose their child. I have met a number of my constituents who have experienced the loss of a baby. Mothers, fathers and siblings have been devastated, left bereft and unable to comprehend what has happened and why. It was heartbreaking to meet them. However, what is equally heartbreaking is that here in the UK, which has arguably one of the best health services in the world, we have one of the highest rates of infant mortality in Europe and other parts of the developed world. It is shocking that we have higher infant mortality rates than countries such as Croatia, Lithuania, Estonia and Slovenia.

Sadly, unlike other countries we have barely seen any reduction in infant mortality rates in the last 20 years. Almost three quarters of child deaths under the age of 15 in the UK happen during the first year of a child’s life; more than half in the child’s first 28 days; and almost 40% in the child’s first week. These statistics do not include the one in 200 pregnancies in the UK that end in stillbirth. Stillbirths account for the death of a further 4,000 babies a year.

There are many reasons for perinatal, early neonatal and neonatal deaths, but I will concentrate today only on stillbirths and on sudden infant death syndrome or, as it is perhaps more commonly known, cot death. That is not because I have no interest in other forms of infant mortality, but so I can focus the Minister’s mind on a few actions that might make the difference sooner rather than later. That said, I wanted to give a wide title to the debate today because I am aware that colleagues have other issues they may wish to raise.

The figure of 4,000 stillbirths per annum is far too high. I cannot imagine the horror of having to go through labour knowing that your baby is already dead. I met one lady who gave birth to her son, Henry, at 38 weeks, but he had not grown for 16 weeks. In the intervening weeks, she had forged a bond with her unborn son, named him and planned a life ahead, but it was one that would never be fulfilled.

Our NHS is brilliant and our midwives are fantastic, but I have yet to meet a woman who has gone through pregnancy without seeing more than one midwife. One lady told me that she had seen 12 different midwives during her pregnancy, which sadly ended in stillbirth. She felt that all 12 of them had different ways of measuring her. I am not going to criticise the midwives—they do not deserve criticism—but we need to ensure continuity of care throughout gestation, to give mothers some peace of mind.

Research that the National Childbirth Trust carried out with the Women’s Institute last year into women’s experiences of maternity services highlighted the shocking statistic that 34% of women were not given the name and phone number of a midwife to contact with any concerns. We must do more to encourage people to go into midwifery, and I hope the Government’s pledge to increase the number of health visitors will help in that regard.

However, we also need to improve our standard monitoring and measuring systems, making the most of modern technology. In the case of poor Henry, who had not grown for 16 weeks, it was clear that the measuring was not as good as it could have been. I accept that not everyone agrees with me on this, but I believe that we should be looking to increase the number of scans expectant mothers receive. Having a scan at 12 weeks and again at 20 weeks is fine, but unless a mother is anticipating complications, those are the only scans she will receive.

There are examples of the successful use of increased measuring and monitoring. The Rainbow clinic at St Mary’s hospital in Manchester, which is funded by Tommy’s baby charity, has taken huge and groundbreaking steps forward in understanding the risk profiling of mothers, and it has a great success rate because of its extra monitoring and measurement. I would like to see its work rolled out. The clinic’s test on those who are deemed to be at risk—possibly due to previous multiple stillbirths or miscarriages, which we know increase the risk of future stillbirths or miscarriages—allows those in the “at risk” category to receive further monitoring and measuring in the third trimester, when placenta problems usually occur, to allow earlier delivery if necessary to prevent stillbirth.

These preventive measures involve awareness raising and risk profiling, followed by improved measuring, with new techniques and monitoring through an increased number of scans. They have led to a significant increase in healthy babies being born to women in the “at risk” group. Although the study at the Rainbow clinic is on a small scale, it has a very high success rate. However, the clinic does not have the funding to expand its work and I urge the Minister to examine its work and give it her full support.

I am not an expert on placenta. However, given that we know it starts to break down at 38 weeks but we do not induce mothers until 42 weeks—a point when we know women carrying later are more at risk of losing their baby—we need extra research into this process and to determine whether this delivery time frame is still viable. I will not dwell on that now, but it would be helpful if the Department examined both the risks and the benefits of reconsidering induction as late as 42 weeks. I have spoken to women who have had stillbirths and many of them raised this issue with me. There is genuine concern about the length of time that women are carrying babies for, particularly those at the higher risk end of the spectrum.

This issue is not all the responsibility of the NHS and it is important that we raise awareness of reduced foetal movements, so that expectant mothers can spot early signs of distress. The Count the Kicks charity has fabulous self-monitoring support, empowering mums-to-be with knowledge and confidence, including a mobile phone app and tips for dads. This understanding should be universal.

If a stillbirth does occur, it is important that the parents receive all the support they need. The third sector does an amazing job of providing advice and bereavement support for parents who lose a child before, during or shortly after birth. However, we need to ensure that parents receive good care from the health service, whether that is by ensuring the appropriate equipment is available—such as cameras and other equipment to take handprints and footprints, with staff available who know how to use it—or by providing access to all the literature and available support and advice, including bereavement services. We must also ensure that parents receive correctly handled treatment; we must remember to treat them as parents even if they do not have a baby.

[Dr Phillip Lee (Bracknell) (Con)]

I congratulate my hon. Friend on securing this debate. As someone who has professional first-hand experience of dealing with parents who have had a stillbirth, I know that it is an emotive topic but it is essential that we discuss it. Recently, Scotland produced a report outlining that its infant mortality rates are improving and it appears that it has a different approach to education, assessment and analysis of at-risk groups.

[Tracey Crouch]

I am grateful to my hon. Friend for his intervention. It was a coincidence that the Scottish Government released their statistics on infant mortality yesterday, which showed that Scotland now has the lowest infant mortality rates in the United Kingdom. It has managed to do that by introducing some of the measures I have already proposed in this debate, such as extra monitoring, extra targeted intervention and support for those at highest risk. That work should be rolled out across the United Kingdom.

We must be very clear about the bereavement services and support that people receive. A local charity in Kent, Abigail’s Footsteps, is working with the Royal College of Nursing to establish a national standard of bereavement training that it would like to see universally implemented. That is absolutely fantastic. On top of that, however, one of the best ways to accomplish good care in all the areas I have mentioned is to create the job specification of bereavement midwives within the NHS. This suggestion is supported by Sands, the leading stillbirth and neonatal deaths charity. I fully support this proposal and urge the Minister to consider introducing a nationally recognised job specification for bereavement midwives, which I believe would ensure the best possible mental health of, and support for, parents whose babies die before, during or shortly after birth.

I am aware that people have suggested that this will be an additional cost to the NHS, but we need to remember that the cost to the NHS of supporting people with mental health concerns, as well as loss of productivity because they have lost a child, is significant—some £1.5 billion to £2.5 billion. Therefore, an early investment in such support services will make a massive difference.

A bereavement midwife would be familiar with all relevant policies and procedures. They could ensure that all protocols are up to date and that relevant paperwork and equipment is always available; ensure that there are high standards in bereavement care in every relevant hospital department; and liaise with others within the hospital, such as chaplains, neonatal and paediatric pathologists and mortuary staff. They would also be able to promote good communication and building relationships with primary care providers such as GPs, as well as external bodies, including the registrar of births and deaths, and to ensure that patients have access to all appropriate available support and literature.

We are lagging behind on stillbirths, and I think the Minister will agree that we need to do more. I have outlined just a few suggestions that would help, as proposed by those who work in maternity care and who have suffered the loss of their own baby during pregnancy.

As tragic as a stillbirth is, the sudden death of a baby who was born, named, taken home and then fell asleep never to wake again is something I cannot even begin to imagine. Sudden infant death syndrome, or cot death, was dramatically reduced due to the outstanding success of the “Back to Sleep” campaign that the Government launched in the mid-1990s. The campaign, reminding parents that babies should sleep on their back, not side or front, was highly successful and led to an outstanding drop in the number of cases of babies who died of sudden infant death syndrome. As a result of that campaign, the number dropped from five babies a day in the mid-1980s to five babies a week, where it has stubbornly remained ever since, even 20 years later.

Access to information is vital. The first thing we need to do is reinstate the literature that new mothers used to receive when they left hospital with healthy babies. Unfortunately, the helpful “Safer sleep” guide was caught up in the Cabinet Office’s bonfire of public sector communications, and now new mothers are expected to rely on other organisations providing information. The Bounty pack is brilliant, although it is not necessarily immediately available or universal; however, the information provided in it could be life-saving. Risk profiling is essential if we are to reduce SIDS. Mothers need to understand the dangers of alcohol, smoking, vitamin deficiency and obesity, both during and after pregnancy, as a matter of course and not just as an optional extra, because those are the biggest causes of preventable perinatal death.

The Lullaby Trust and Bliss do wonderful work together and are helping my own local authority in Medway, which has multiple areas of deprivation, to identify risk and support professionals targeting intervention. This is essential. The statistics speak for themselves. The cross-party report published recently by colleagues, entitled “1001 Critical Days”, found that 26% of babies in the UK are estimated to be living within complex family situations, which can heighten the risks for a baby’s well-being, and that drug and alcohol problems affect more than 109,000 babies. Targeting resources at higher-risk families, parents and babies will help to reduce SIDS. It is essential to ensure that support and information are there for those who have premature babies, have babies young, or who are living in complex situations.

Furthermore, if we are really going to tackle infant mortality and reduce our embarrassingly high rates, we need to support, encourage and promote breastfeeding and improve access to “Healthy Start” vitamins, which are currently only accessible via named chemists. These should be available at all chemists. Investment should be made in both universal and targeted services, as recommended by the Healthy Child Programme. Where targeting has not made an impact—for example, vitamin D supplementation—universal approaches should be considered if they are also cost-effective. We need to highlight the message that this is not an optional extra, but is vital to ensuring foetal welfare.

We must improve awareness of smoking cessation services and the harm caused to unborn children by smoking. Similarly, we need to ensure that people understand the dangers of smoking for those who have been born. We must also do more to discourage binge drinking during pregnancy. I was shocked to learn that 18% of women still binge drink—that is, drink more than six units in one session—while pregnant, often leading to foetal alcohol syndrome.

I know I have not covered everything in this debate, but I hope it is a useful start. I thank the Royal College of Paediatrics and Child Health, Tommy’s, Sands, Kent Sands, Bliss, the Lullaby Trust, Abigail’s Footsteps, Together for Short Lives, the National Childbirth Trust, the Women’s Institutes and Bounty for their briefing materials in advance of this debate. I thank, in particular, the mothers and fathers I have met who have spoken movingly about their own personal tragic experience.

The Prime Minister said he wants to make sure that Britain is the best place to end life. Today, I am calling for us to work together to make Britain the best place to start life and give every expectant mother all the support they deserve. I look forward to the Minister’s response and the contributions of other Members, and thank them for taking the time to be here this afternoon to discuss this important issue.

[Tim Loughton (East Worthing and Shoreham) (Con)]

It is a pleasure to serve under your chairmanship, Mr Davies. I congratulate my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) on an excellent speech and on raising the profile of this much neglected but hugely important subject for many of our constituents who have been through the pain of stillbirth, infant mortality or perinatal mortality.

I am, slightly shamelessly, going to use this debate as a further opportunity to plug the ten-minute rule Bill that I put before the House on 14 January, with the support of my hon. Friend and other hon. Members. I am pleased to see the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison) here, as she sat in on that ten-minute rule Bill. I am glad that her colleague at the Department of Health has now, I hope, agreed on a meeting to take that forward; some of us can take constituents affected by stillbirth to that meeting and see whether we can bring about the change in the law that I will come back to in a minute.

I echo the accolades that my hon. Friend the Member for Chatham and Aylesford bestowed on all the organisations that have an interest in this matter and have for many years, quietly but assiduously, been campaigning for better care for people bereaved by stillbirths or who lose their children at an early age, giving support and advice, and campaigning for improvements and changes in the law.

This is quite a complicated area. Although the debate is entitled “Stillbirths and Infant Mortality”, we talk about neonatal deaths, perinatal deaths and post-neonatal deaths—those deaths between 28 days and a year after birth—as well as infant and stillbirth mortality rates. However, across all those fields the record of the United Kingdom is not good. My hon. Friend contrasted the UK’s record with the great progress made on sudden infant deaths, particularly on cot deaths, during the “Back to Sleep” campaign. A concerted, focused and well promoted campaign led to a decrease of more than two thirds in the horrific spate of cot deaths that afflicted so many families. It is perplexing and worrying that, although there has been some progress in reducing mortality rates across the board, pre and post-birth, they still remain alarmingly and unacceptably high, certainly compared with European partners.

Total perinatal mortality rates now stand at some 7.4 per 1,000 live births in this country. In comparison, the figure for Finland, which has the best record on this front, is 3.2 per 1,000 live births, and even Portugal, which has challenging questions to face about infant health, has a rate of 3.8 per 1,000 live births. We are still way behind. An awful lot of those perinatal mortalities, particularly the stillbirths among them, remain completely unexplained.

We also have to add miscarriages to the figures, which apply only to the official recognition of stillbirths as embryos born dead after 24 weeks. Those figures, of course, do not include miscarriages, yet more than one in five pregnancies in this country ends in miscarriage, which means that more than a quarter of a million of our constituents are affected by miscarriages each year. The problem is huge.

Most miscarriages happen in the first three months of pregnancy. Some women may hardly know that they have had a miscarriage, and some may have miscarriages without knowing they were pregnant in the first place, but many women, including some constituents who have come to me since I presented my ten-minute rule Bill, have miscarriages well into their pregnancy, when the grief, trauma and distress of losing a hoped-for child is that much greater.

The way in which we support women who have been through such experiences is also worrying. Research by the Miscarriage Association found that 45% of women who have experienced a miscarriage did not feel well informed about what was happening to them. Only 29% feel that they were cared for emotionally, and nearly four out of five, 79%, received no aftercare. We know that at least one in six women—a very large number—experience some form of perinatal mental health problems. That has a great cost, socially and emotionally to those women and financially to our national health service. It is a false economy not to ensure that we support those women, whether they have suffered a miscarriage early or late, or whether they have suffered a perinatal mortality either before or after birth.

[Dr Lee]

On the subject of false economies in the national health service, historically we have spent significant sums on antenatal care without a lot of evidence to support that expenditure. Does my hon. Friend agree that we need to concentrate resources in the appropriate hands? We need appropriately staffed maternity units—there are worrying statistics about midwifery-led versus obstetric-led maternity services—and by doing that we can address our infant mortality rates, which compare poorly with those of our European neighbours. As politicians, we must also accept that doing that would involve reconfiguring services. There would be fewer maternity units and perhaps more obstetricians.

[Tim Loughton]

My hon. Friend has great hands-on experience, and he knows a lot more about this subject than I do. He opens a far greater debate on the accessibility of maternity services. I am sure I am not alone in having marched and campaigned for the retention of midwifery-led maternity services at a local hospital. Interestingly, the biggest growth in mothers giving birth at that hospital has been among those who live outside the Worthing catchment area. Those mothers choose to go to the hospital.

[Dr Lee]

I want my hon. Friend to know that I campaigned to close my local midwifery-led unit because it was not delivering many babies—it was delivering less than one baby a day. I have real concerns about the potential for increased infant mortality in such midwifery-led units.

[Tim Loughton]

It is horses for courses. I am glad to say that my maternity unit delivers well in excess of 3,000 babies a year. It is a centre of excellence, and the customer votes with her feet by choosing to go there from outside the area. My hon. Friend is absolutely right that the assessment of units must be primarily based on the quality and safety of care for mothers, but I fear we are straying slightly beyond stillbirths and infant mortality rates into the availability of maternity services and hospitals. You would not want us to go there, Mr Davies.

My hon. Friend also raises an interesting point about delivering services in the most appropriate way. There are certain constituencies of women and certain parts of the country where the problem is that much greater. To take one of the classifications, the infant mortality rate in the UK overall is 4.4 deaths per 1,000 live births, but the variations for mothers born outside the United Kingdom are worrying. For babies of mothers born in the Caribbean, the figure more than doubles to 9.6 deaths per 1,000 live births. For babies of mothers born in Pakistan, the rate is 7.6 deaths per 1,000 live births, and so on.

There are also regional variations, particularly for perinatal mortality overall. In the south-west, the figure is 4.7 deaths per 1,000 live births, but in the north-east it is 5.8 deaths per 1,000 live births—a 23% difference. Why are there those differences? We simply do not have enough research; we have not commissioned and are not doing enough research to find out why certain types of women and certain geographical locations are faring worse. Such research would enable us to focus, say, additional scans or support services, or whatever is required, to ensure that we make the best use of our NHS resources. My first call is for there to be rather better research across perinatal mortality.