Baby Loss Awareness Week

Caroline Johnson Excerpts

Tuesday 10th October 2017 Commons Chamber

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

I pay tribute to the bravery of the many people who have described very personal and moving experiences in the Chamber this evening. I have experienced this issue from a different angle, in a professional capacity. As a consultant paediatrician, I have been privileged to see many hundreds of babies come into the world. I can honestly say that the joy and the miracle of that event, in whatever circumstances, is not diminished by having seen it on numerous occasions.

As a junior doctor, one is fortunate to see many happy occasions when babies are born in good health and at full-term. As a consultant, one is called only when either the mum or the baby is in significant trouble. That might be when the baby is very premature, when the baby or mum is very sick—for example, following a road traffic accident or with sepsis, which we have heard about here before—or when the baby is, sadly, born without a heart rate.

I can remember occasions from my professional experience when I have had to give parents the news that nobody—I speak as a parent of three—ever wants to hear, and no doctor ever wants to give: that a baby or child is, sadly, going to die. I remember holding one particular infant in my arms, because his parents were not able to do so, as he passed away. There is no doubt that we need to do everything we can—NHS professionals work very hard every day—to make sure that that does not happen, but unfortunately it does. I welcome the Government’s target to reduce the incidence of stillbirth by 50% by 2030.

I want to talk about some of the changes that have been made during my career. I graduated as a doctor in 2001, and I worked as a consultant paediatrician in the NHS, particularly in neonatal care. A number of changes in neonatal care have led to improvements over this time. There has been an increasing centralisation of neonatal care, so that the smallest and sickest infants are cared for in areas of significant expertise. This has helped to reduce mortality, particularly for the smallest and sickest babies. It has also led to a need for transportation. A baby who is born in a small district general hospital may need to be transferred many miles—sometimes hundreds of miles—to a hospital that has the expertise to care for their particular problem. When I was a junior doctor, that meant the doctor who was on shift, such as me, getting into the back of a 999-called ambulance and taking the baby in an incubator to wherever they needed to go.

Over the past few years, that has changed considerably. We now have clinical networks and areas of the country are divided up into patches in which there is a dedicated clinical team, led by a consultant neonatologist, with nurses and doctors who have specialised in this area. In many cases, there is a dedicated ambulance, as well as helicopter transport, to come and retrieve babies from whichever hospital they are born in and to take them to such a centre of expertise. That has been a big improvement in the care we offer children during the time that I have been a doctor.

As was mentioned earlier, another thing we have done is to focus much more on the lessons that we can learn. As a doctor, the first infant I saw who died was a young boy whose death was, sadly, entirely preventable. There was an investigation and lessons have been learned, but that does not take away from the horror of the occasion. It was an awful experience for the family, and it was traumatic for everybody involved. As an introduction to being a junior doctor—although I took no responsibility for it all medically—it was very traumatic, as it was for everybody.

We now have regular meetings to look at the cases of children or infants who have died, suffered significant injury or become more unwell than we anticipated, and where any type of adverse event has occurred. Such cases are looked at in detail by a multidisciplinary team, which goes stepwise through the process from the child being conceived or being referred to hospital and asks what has happened, why it has happened, what could have been done better and what would have changed the outcome. Although we would like to prevent every case, the reality is that, while we will get closer to doing so, we will never prevent every death, in my view. We should, however, prevent every one that can be prevented, and I very much welcome the Minister’s statement about improving the way in which cases are reviewed and about making that a statutory requirement.

I welcome the contribution of my hon. Friend the Member for Thirsk and Malton (Kevin Hollinrake) in relation to child bereavement leave. He is right to say that most employers, like him, are very flexible in dealing with people whose infant may be very unwell in hospital for several months at a time, but some are not, and that places an enormous pressure on such people. I also welcome the national bereavement care pathway. All the hospitals in which I have worked have had bereavement rooms and I think they provided good care to bereaved parents and families, although I know that that is not accepted as a universal statement.

Will the Minister look in detail at the evidence on group B streptococcal infections, and at any evidence relating to whether women should be screened for that in pregnancy?

The centralisation of tertiary neonatal services has been a good thing in making the survival outcomes for babies better. We are now focusing not just on survival but on improving the quality of life, particularly for pre-term infants, such as by improving ventilator settings so that their vision is improved and their lung function is better as they grow up. However, centralisation also has an impact on families. For example, for a baby born in my constituency, the nearest tertiary neonatal centre is Nottingham, and if it does not have a bed, they might be sent further afield to Sheffield, Leicester or Norwich. For people looking after older children at home—having to take them to school, for instance—trying to manage having a baby several hours’ journey away will have a huge impact on the family. It also has significant cost implications, and I not infrequently see parents, particularly in working families on low incomes, who are struggling with the financial implications of travelling to visit their desperately sick baby who is several hours away.

Overall, I think there have been many welcome announcements in this field today.