Neonatal nursing: new guidelines on caring for very premature babies

BAPM guidelines outline the stark decisions that may arise when caring for extremely premature babies

New British Association of Perinatal Medicine guidelines examine the stark decisions that arise when caring for babies born before 27 weeks

  • Babies born at 22 weeks should now be considered for 'active treatment'
  • Guidelines detail chances of survival and risks of severe disability
  • Babies’ risk category gives strong weighting to views of parents
Picture shows a premature baby asleep in an incubator. New guidelines for nurses examine the stark decisions that arise when caring for extremely premature babies
Picture: Alamy

Every year about 3,000 babies are born before 27 weeks' gestation. Deciding what to do and how to do it when caring for these babies are among the trickiest decisions faced by maternity and neonatal teams, as well as parents.

New guidelines from the British Association of Perinatal Medicine (BAPM) attempt to help nurses and other staff through the dilemmas of caring for extremely premature babies.

The framework provides detailed information about the chances of survival and the risk of severe disability week by week, as well as what steps should be taken in terms of obstetric and neonatal care, and advice on how to communicate with parents.

Active treatment helps the infant survive

The guidelines were drawn up by a working group including doctors, nurses, experts in medical ethics and representatives from the charity Bliss.

The headline recommendation is that babies born at 22 weeks should be considered for what the guidance calls ‘active treatment’ – that is to say providing treatment to help the infant survive.

How to decide on active treatment or palliative care

The British Association of Perinatal Medicine guidelines set out a risk categorisation scale to help health professionals and parents decide which babies should receive active treatment.

It says the working group considered that babies with a more than 90% chance of dying or having a severe impairment if they survive should be classed as extremely high risk and usually receive only palliative care.

Babies born at 24 weeks or more would rarely fall into this category.

Babies considered to have a 50-90% chance of dying or having a severe impairment if they survive should be considered high risk. It says the decision on whether to proceed with active management should be based primarily on the wishes of the parents.

Risk assessment and parents’ knowledge, views and values

Finally, those whose risk of dying or surviving with severe impairment is less than 50% should receive active treatment.

But the guidelines concede there is no objective way of defining a risk as extremely high or just high, as parents could have different views on the disabilities they would consider unacceptably poor. Any risk assessment may need to be modified in light of the parents’ ‘knowledge, views and values’.

In a multiple pregnancy the risk may differ between fetuses, so each should be considered as an individual.

Previous guidelines published by the BAPM in 2008 had set the limit at 23 weeks. But the latest version acknowledges advances in medicine and documented cases where babies survive after being born at 22 weeks, which suggests that in some situations it is right to try to save the baby.

‘The risks mean that it’s not always the right thing to do to provide intensive treatment’

Dominic Wilkinson, member of British Association of Perinatal Medicine working group

However, it makes it clear that the chances are slim for any baby born at such an early stage. It points to data compiled from 2016 showing that out of 486 such births, just 43 received active care and only 15 survived to one year.

Survival rates for those born at 23 weeks who receive active treatment have doubled in the past ten years, but of the 510 births at that gestation in 2016, just over half had treatment to save the baby and 101 survived to one year.

BAPN outcomes for babies
Reproduced with the permission of the British Association of Perinatal Medicine 

Babies born before 22 weeks cannot survive because their lungs are not developed enough, the guidance says. However, even when they do survive there is a significant risk of severe impairment, such as cerebral palsy, blindness and profound hearing problems. At 22 weeks, one in three survivors has a severe impairment, falling to one in ten at 26 weeks.

Parental involvement in planning an extremely preterm birth

University of Oxford professor of medical ethics Dominic Wilkinson, a member of the BAPM working group, says the improving survival rates are ‘fantastic news’. But he adds: ‘The risks mean that it’s not always the right thing to do to provide intensive treatment. Sometimes the best and wisest path is to take a palliative approach.’

To help decide when active treatment is appropriate the working group produced a risk categorisation system setting out which babies should be considered extremely high risk, high risk or moderate risk. Crucially, it gives a strong weighting to the views of parents.

Wherever possible the parents should be involved in planning an extremely preterm birth, the guidance says. It also provides advice about simple ways to communicate risk and how to discuss poor outcomes in honest and clear ways.

‘This can be difficult for nurses and the rest of the team too – debriefs and supporting staff is key’

Julia Petty, vice chair of Neonatal Nurses Association

Neonatal Nurses Association vice chair Julia Petty says nurses play a crucial role in this process. She states that while extreme prematurity is a ‘tricky and emotional’ area of care, parents ‘want honesty’.

‘The consultants normally lead on this, but neonatal nurses should also be there. They are the ones involved with the ongoing care and can act as advocates for the parents and provide emotional support alongside the care.’

She says the use of psychologists can make a difference for parents as well as staff.

‘We should not forget this can be difficult for nurses and the rest of the team too – debriefs and supporting staff is key.’

The guidance also sets out what good care should look like.

Transfer to a specialist hospital with a neonatal intensive care unit should be considered at the earliest opportunity.

If life-sustaining care has been agreed, the following treatments should be considered:

  • Antenatal steroids to boost lung function.
  • Tocolysis medication to delay premature labour.
  • Deferred cord clamping, ideally for 60 seconds.
  • Fetal heart rate monitoring.
  • Caesarean section if benefits outweigh risks.
  • Plastic bags or other methods of delivering thermal care.
  • Sustained lung inflation with face mask – and if this is not effective the baby should be intubated.
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Whether the baby is born in an unexpectedly poor condition or good condition it is reasonable for the neonatal team to proceed with care in the baby’s best interests.

BAPM president Helen Mactier says: ‘Over the past decade we’ve learnt a lot. There have been incremental improvements in all areas. The centralisation of specialist services has had a particularly big impact. A decade ago only about half of these births took place at a specialist centre – now it’s close to 80%.’

‘My twins received amazing care’

Picture shows Jennie and Rich Powell with their sons Ruben and Jenson, who were born preterm. New guidelines for nurses examine the stark decisions that arise when caring for extremely premature babies.
Jennie and Rich Powell with their sons Ruben and Jenson, who were born preterm

Ruben and Jenson Powell became the youngest surviving preterm boys in Britain when they were born in August 2018.

They were delivered at under 23 weeks gestation. Their parents Jennie and Rich, from Brighton, were in Cornwall when Ms Powell went into labour.

They were flown to the John Radcliffe Hospital in Oxford, where they spent more than 150 days under the care of the neonatal team.

The boys had to contend with sepsis and lung problems, while Ruben had to undergo surgical treatment when his intestines failed. They also had eye injections and laser surgery and had more than 20 blood transfusions.

Today the boys are thriving, although they have chronic lung disease, which leaves them vulnerable to colds and infections.

Ms Powell says: ‘The care we received was truly amazing.’

Nick Evans is a health writer

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