This year, like every other, thousands of parents will go through an experience the whole impact of which is almost beyond description. Months of pregnancy, and long hours of nurturing and hope, will end with a still birth, or an agonising vigil amid the dim lights and monitors of a ward for premature babies. For some, like me, there will be a particularly upsetting twist. They will find there is no birth or death certificate, and no funeral. There will be little recognition of any kind, only a note in the medical records to say that the hours of nurturing and hope have ended in the cold facts of a late miscarriage.
To lose a baby is a terrible sadness, as I have found from personal experience. To find your child disregarded, barely a statistic even, is particularly distressing. Hope: Kym Marsh with daughter Daisy Parkin, who was born at 24 weeks. Her twin, Archie, lived for only one week My third child died this way, a cause of pain that I would not wish on anyone. My son was born prematurely at 21 weeks and died. It was all the more traumatic to find that neither the professionals nor the British legal system consider a baby to be a ‘viable’ human being until 24 weeks. He was so tiny, the nurses did not even bother to weigh him, but as far as I am concerned I gave birth to a baby boy and his name was Archie. The hormones kicked in just the same and I was left with the baby blues, but without the child that should go with them. The nurses did their best, but I was offered little professional help to cope with the death beyond a few leaflets about charities that dealt with child bereavement. Although I had the support of my partner Jamie Lomas, and my two older children, I felt incredibly alone. If I wanted counselling or someone other than family to talk to, I had to seek it out myself, at a time when what I actually needed was someone to come to me and offer me support. Thousands of people wrote offering their sympathy, including the Prime Minister’s wife Sarah Brown who, having gone through a similar situation herself, has been hugely supportive. Our loss will never go away nor, similar to so many other parents who have suffered in this way, are we any closer to knowing why things ended as they did. This was one reason I agreed to take part in an investigation for ITV’s Tonight programme about the growing number of premature births and why prematurity is now the greatest cause of infant death in Britain. I knew that if I was to make any sense of Archie’s death then I had to get some answers – not just for me, but for the thousands of others who suffer. The experience of filming brought home some disturbing truths. There are 50,000 premature babies born each year, which is to say babies born before a pregnancy reaches its 37th completed week (full-term is normally 40 weeks). It gives us one of the highest rates of premature birth in Europe. This figure does not even include the sort of ‘late miscarriage’ that took the life of Archie. And there is, of course, a fierce debate about when life is truly viable. As anyone who has seen a 23-and-a-half week foetus crying will testify. Many medical experts believe the high rate of premature births is the result of weaknesses in the way we care for pregnant mothers. For all the improvements seen elsewhere in the health system, maternity services remain badly underfunded, and nowhere is the money so thinly stretched as in the field of caring for premature babies. The NHS Neonatal Task Force, which included doctors, nurses and the charity Bliss, was created in February last year to set a series of guidelines and drastically improve the standard of neonatal care in Britain. Exception: Kym Marsh with mum Kate Branchett and daughter Molly, born at just 1lb 3oz and now making progress at Birmingham Women’s Hospital As a result it recommended an annual investment of £89million – and that a further one-off sum of £102million was required to bring the service up to an acceptable standard.
The task force report identified a shortfall of 2,700 nurses and 300 other staff, such as physiotherapists and dieticians, in the UK’s 162 neonatal units that provide care to babies in the first 28 days of life. But the money to fund it will now have to be found from within local health budgets, which I fear has almost certainly put it right back to the bottom of the political agenda once again. The lack of funding seems particularly perverse when premature births are estimated to cost the UK economy £1billion a year. Neonatal care is hugely expensive, and there are serious implications for many of these babies, who can later suffer a range of chronic problems affecting eyes, lungs, digestive tracts and much else. Last week, Ministers formally endorsed the task force’s recommendations. However, they refused to promise any additional money to bring the care of the sickest babies up to the standard for children and adults in the UK. Children and adults in intensive care units receive one-to-one nursing. Yet only a third of Britain’s units which deal with premature babies offer the same level of support. Birmingham Women’s Hospital, where I began my investigation, is one of these exceptions. It has an impressive, well-staffed £7million neonatal unit and the results are plain to see. I met Gemma Parkin who gave birth to twins Archie and Daisy at just 24 weeks and three days. Archie survived for only one week, but Daisy was allowed home after three months. For Kate and Duncan Branchett it was a similar story. Again, one of their twins died, but doctors kept their daughter Molly. She weighed just 1lb 3oz – such a low weight that many hospitals in the UK would not have considered her worth saving. She remains on the neonatal ward, making good progress. Many mothers have a very different experience, though. Elaine Roberts gave birth to her son Jack at 29 weeks and when he became ill he was shuttled between four hospitals – Dewsbury, Bradford, Leeds St James and Pontefract, a one-hour drive from her home – because there were not enough trained staff available. However, they wanted to ensure he had the best specialised care available and this was the only way. He survived, but the risks to mother and child were obvious. I wanted to find out if anything could be done to identify which mothers are most at risk. Assistance: Kym was supported by boyfriend Jamie Lomas, but she craved some professional help I know that the natural thing was to blame myself for the death of my child, to assume that I did something wrong. I was in no way at fault, of course, nor are thousands of other would-be mothers who suffer in the same way. There was no indication that the pregnancy would end at just 21 weeks and five days. When my first son David arrived in 1994, he was seven weeks early at 33 weeks. He weighed just 4lb 4oz and had to be tube-fed for a week in the special care unit, and was in hospital for a fortnight before we were allowed to go home. He is now 5ft 9in and a strapping, healthy lad. Three years later I had my daughter Emily, who is now 12, and everything was fine. So I had assumed that David’s early birth was a fluke. It did not cross my mind when I got pregnant with Archie that anything might go wrong. Yet, in future, we could all be better prepared – with just a bit more financial investment, of course. Professor Lucilla Poston, director of maternal and foetal research at University College London, believes that the simple saliva test she is developing could help cut the number of premature births, and the dangers associated with them. It identifies which mothers are likely to be vulnerable by detecting levels of progesterone, the hormone that helps stop the womb contracting before the full term of 40 weeks. Low levels of progesterone put women at risk of delivering more than six weeks early. Although tests have so far been successful, she needs funding to extend the study – funding that is not yet available. When I was pregnant with Archie, I seemed to have every test going, from blood samples to checks for sexually transmitted diseases, but none of them was able to detect what was going to happen to me. If I’d had the saliva test and it revealed I had low progesterone levels, I would have been monitored throughout the pregnancy and been better prepared mentally. If doing no more than analysing my saliva could have made a difference, why are we not doing more to finance a breakthrough? Throughout my investigation it became clear that funding in all areas was the main issue. But for charities such as Tommy’s, Bliss and Baby Lifeline, we would be even further behind. Because there is no money ‘ring-fenced’ for maternity services, it remains up to each health authority to decide how much it spends. Health Minister Ann Keen agreed to meet me for the programme. I was grateful for her time. However, although she answered my questions, I felt she could have done more to directly address the issues. She told me the Medical Research Council has been looking into why premature births occur. Yet she preferred to talk about the importance of healthy living before and during pregnancy – through improved diet and avoiding nicotine and alcohol. ‘There is a grant now for mums to get themselves more fresh fruit and vegetables to look after themselves,’ she said. ‘We want to encourage that because some of the evidence we already have is saying that investment in the mum is cost-effective, apart from it being the right thing to do.’ Yet the majority of expectant mothers are well aware of this already. The Minister, a former district nurse, told me that safe care for mother and baby is one of her priorities. Yet the Government’s formal response to last week’s task force report would seem to undermine her assurances. Clearly, the country is under financial strain. We all understand that savings must be made, but this argument is about keeping our children – the future of our country – alive. As a parent who has gone through this, I know you have to be brave to try for a child once again. So, when you do, it is essential that you can put your trust in the care that is available.
Interview by Nikki Murfitt • Tonight – Kym Marsh: Born Too Soon is being shown tomorrow on ITV1 at 8pm. www.bliss.org.uk
Teddy & Me 