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The recent BBC documentary 23 week babies - the price of life represented 6 months of filming on the neonatal intensive care unit at Birmingham Women's Hospital. Brilliantly filmed and produced, the programme powerfully illustrated the conflicting emotions of parents confronted with a baby struggling for life at 23 weeks. Four words came to mind: pain, hope, love, despair. As a mother cuddled the tiny form of her bruised and dying baby she whispered, 'Little princess - you are so beautiful…'
So our first response should be one of common humanity - to identify with the pain of the parents, and the extremely difficult dilemmas which delivery at the limits of viability raises. But although the programme showed the heart-breaking reality of neonatal death - 'when hello means goodbye...', the underlying theme was expressed in stark form by Adam Wishart, the presenter, 'Is it worth trying to keep these babies alive?' The opinion of many of the professionals interviewed was clearly 'No'.
The clinical decision about whether to commence resuscitation in a baby born at 23 weeks' gestation is complex and multifaceted. These are not easy decisions and they are too important to be discussed by professionals alone. It is right that all of us should discuss and debate the implications. But in addition to the obvious and difficult moral and personal dimensions there are a number of technical and clinical factors, which were not raised in the programme.
Outcome studies have shown that other clinical variables besides gestational age are crucially important in determining the likelihood of survival and the risks of disability. These include birth weight (the higher the better), gender (girls do better than boys), multiple pregnancies (singletons do better than twins and triplets), and whether antenatal steroids were given prior to delivery (antenatal steroids improve survival and reduce brain injury).
Based on data from a large number of neonatal intensive care units in the USA, a web-based calculator has been developed which allows the chances of survival to be estimated, based on an individual baby's gestational age, weight, gender, birth order and steroid treatment
www.nichd.nih.gov
Based on these USA data, a 23 week gestation singleton female baby of 600 gms weight with antenatal steroids has a 40% chance of survival and a 17% chance of survival without moderate or severe disability. In other words if she survives she has over 40% chance of surviving without disability. In contrast a 24 week gestation twin baby of 500 grams weight without steroids has a 17% chance of survival and only a 4% chance of survival without moderate or severe disability.
So basing decision-making on gestational age alone is likely to lead to major errors of judgment. Making blanket resuscitation rules based on gestational age alone is scientifically and medically indefensible. It is a basic principle of medicine that we should individualise treatment to the specific patient we are caring for. In this regard neonatology should be no different from any other branch of medicine.
A statistic repeated with great authority and finality in the programme was that 9 out of 100 babies born at 23 weeks will survive and only 1 will reach adulthood without disability. It is not at all clear where this figure came from but it is highly contestable. The EPICure study looked at all extremely premature babies born in the whole of UK and Ireland in 1995 (1). It gave overall survival rates of 11% of all live births at 23 weeks. The survival rate was 20% as a proportion of all 23 week gestation babies admitted to a baby unit. However the EPICure study incorporated data from all 276 maternity units throughout UK and Ireland, many of which had no specialised facilities for caring for extremely premature babies. It therefore represents a lowest common denominator figure for 1995 but in no way should it be thought of as a 'standard of care' figure for 2011.
Many published studies have shown much higher survival rates for babies at 23 weeks of gestation. A study based at my own hospital, University College London Hospitals, found an overall survival rate of 46% as a proportion of all live births at 23 weeks for the period 1996 to 2000 (2). Other published studies have reported survival rates of 66% from USA (3) and 41% in Australia (4).
Because delivery at 23 weeks is actually very rare, the numbers of babies which any one centre will see is small. Over a 20 year period the large unit at UCLH cared for a total of 56 babies at 23 weeks, approximately 3 a year. In the BBC programme which was apparently filmed over a 6 month period at Birmingham Maternity Hospital, three babies born at 23 weeks were shown. Of those two died and one survived. It is likely that those 3 shown in the programme were the total number of babies born in that period. This suggests that the survival statistics from Birmingham Maternity Hospital are much higher than the 9 in 100 quoted in the programme and much closer to those from other large specialised centres.
There is clear published data to indicate that the hospital policies and the attitudes of the staff with regard to extremely premature babies have an influence on the overall survival statistics. A large population-based study from Sweden showed that regions that carried out 'proactive' management of extremely preterm infants had significantly higher survival rates than those associated with a 'selective' policy (5). In the period 1995 - 1999 survival at 23 weeks ranged from 16% to 41% with different clinical policies. This is hardly surprising. If staff have a non-interventionist policy towards 23 weeks gestation babies it is very likely that survival figures will be lower. One of the problems of population -based studies like EPICure is that they tend to obscure marked variations between hospitals in their attitudes and policies towards extremely preterm infants.
The BBC programme gave the strong implication that the majority of extremely preterm survivors were significantly handicapped. This depends critically on the definition of 'handicapped'. Molly, the child with hemiplegia, who was seen bouncing on a trampoline and skiing, would probably be classified as 'moderately disabled' because of cerebral palsy, yet in the public mind few would think of her as 'handicapped'. Heather, the 20 year old with severe cerebral palsy shown in the programme, was at the extreme severe end of disability and yet she had achieved passes at A-level and was clearly of above average intelligence.
In the EPICure study, at 11 years of age 52% of children born at 22 and 23 weeks had mild or no disability (6). This seems very different from the impression given by the BBC programme. It is one of the paradoxes of neonatology that long-term outcome after extreme prematurity is better than outcome following severe birth asphyxia or congenital brain abnormalities. It very unusual for ex-preterm survivors to be so severely disabled that they are unable to interact with others and engage actively in life.
Studies of health related quality of life in adolescents and adults have shown that ex-preterm survivors give similar self-ratings to those who were born at term without medical problems (7). In my experience disabled ex-preterm survivors regard any paternalistic suggestion that their life was not worth saving as outrageous and offensive.
Here the programme was, sadly, entirely accurate. It is true that neonatal intensive care is able to attract substantial resources because it is seen as 'life-saving', 'high-tech', and 'sexy', whilst improving community physiotherapy or occupational therapy services for disabled adults is seen as boring and of little interest. Disabled people frequently feel that they are marginalised and ignored by the 'normal' majority. But the answer to this problem is clearly not to prevent resuscitation of sick children in case they survive disabled. Instead a humane society ensures that adequate resources are made available for each of its citizens, especially those who are vulnerable and whose voice is marginalised. Yes, we should fight for better services for disabled people, but the obvious inadequacies in our social provision cannot be used as a reason for failing to care properly for premature babies.
The programme implied that despite the advances in science and technology over the last 30 years there was no prospect of future improvement in the outlook for babies at 23 weeks. This bleak and fatalistic view seems quite out of odds with contemporary opinion in biology and neuroscience. There have been huge advances in the development of various therapeutic strategies for overcoming brain injury, ranging from specific neuropsychological programmes to help people with disability, and hypothermia treatment for asphyxiated babies, to basic research into brain repair and regenerative mechanisms. It is likely that the next 10 years will see substantial improvements in the therapeutic options for infants and children who suffer brain injury around the time of birth. There is no reason for a despairing fatalism in this area of medicine any more than there is in cancer medicine or the treatment of Alzheimer's disease. We should celebrate the achievements that have been made whilst looking forward towards those that are to come.
Babies born at 23 weeks represent a small proportion of the workload of neonatal intensive care units. They represent about 1-2 in 100 of all admissions. It was suggested that care for 23 weekers cost the NHS 10 million pounds a year. This should be compared with the total NHS budget of about 110 billion pounds a year. In other words care for babies born at 23 weeks represents less than 1/10,000 of the NHS budget. The cost of one Typhoon fighter jet is 60 million pounds plus. It is unrealistic to think that stopping care for 23 weekers would have any detectable effect on the NHS or on the economy of the UK.
UK and European law is quite clear that every baby born alive has the full human rights of a citizen, including 'the right to life'. This is also confirmed in the UN Declaration on the Rights of the Child. From the moment of birth health professionals have a legal duty of care to act in each baby's best interests. In other words the primary responsibility we have is to do the best we can for each individual baby. In each case we should try to balance the burdens and risks of intensive care against the likely benefits for this particular child. The law makes birth the transition point at which full human rights are acquired, irrespective of gestation, and to act in a way which is not in a baby's best interests would be a serious breach of those rights. We cannot treat these babies as disposable - they are as much citizens as we are.
The BBC programme gave the impression that parents are given the final legal responsibility as to whether resuscitation occurs or not. This is highly misleading. As mentioned above, health professionals have a legal duty of care to act in each baby's best interests, and this cannot be handed over to the parents. The recommendations from the GMC and the Royal Colleges is that doctors and parents should act collaboratively to come to an agreed and consensual decision as to what is in each baby's best interests. Adam Wishart suggested that doctors alone should make the decision as to whether resuscitation should be carried out at 23 weeks. But a moment's thought suggests that this would be perceived as paternalistic, abusive and unacceptable by the vast majority of modern parents. After all, it is the parents who have to live with the life-long consequences of these decisions, not the doctors. The suggestion that health professionals should make decisions about resuscitation and intensive support treatment of children without reference to the parents would be to set the clock back 50 years to a paternalistic style of medicine which is long gone.
Each baby deserves the best possible care. Yet the decision as to whether to commence resuscitation or not is complex and painful. In some cases it is clearly right that doctors say 'enough is enough'. Just because a treatment is available does not mean that it should be used. But if there is a realistic chance that this particular baby can survive without overwhelming and catastrophic injury, then surely as a rich country we owe it to each child to give them a chance of life. In this situation it is best to start 'provisional intensive care'. We start intensive treatment in order to give each baby the very best chance of survival but we recognise that if it is clear that the baby cannot survive, or if there are catastrophic complications, then we may change our policy and withdraw intensive support.
These decisions are painful and difficult. The programme showed the depth of the pain and distress experienced by parents and by the staff caring for them. But there is no reason for doom and gloom about premature babies. We should celebrate the successes that have been achieved, value the lives of those who have survived against all the odds, whether disabled or not, and look forward to future advances in the care of these vulnerable citizens.
As a society we need to learn to reflect the words of Joseph Pieper: 'Love is to say to another, "It's good that you are alive, It's good that you are in the world".'
John Wyatt is Emeritus Professor of Neonatal Paediatrics at UCLH. The opinions expressed are his own and do not reflect those of any body or organisation.
1. Wood NS et al. New England Journal of Medicine. 2000; 343: 378-84.
2. Riley K et al, Acta Paediatrica. 2008; 97 :159-65.
3. Hoekstra RE et al, Pediatrics 2004; 113: e1-e6.
4. Doyle LW. Early Human Development 2004; 80: 103-113.
5. Hakansson S et al. Pediatrics 2004; 114: 58-64.
6. Johnson S et al. Pediatrics 2009; 124; e249-e257.
7. Saigal S. Pediatrics 2006 Sep; 118: 1140-8.
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