Urgent, gentle care: life on a neonatal unit

The smallest can weigh not much more than 250g and be held in the palm of an adult’s hand. The skin of extremely premature babies – born at perhaps 22 or 24 weeks instead of 40 – can be translucent, allowing their organs to be seen. They are, as one medic puts it, “on the cusp of viability”.

Other babies have arrived at full term but suffered problems during their birth, such as a catastrophic loss of oxygen and/or blood to their brain. Or they may have a serious medical condition that was picked up during antenatal care, such as spina bifida or a congenital heart problem. So their care in NHS neonatal units, such as the one the serial killer nurse Lucy Letby worked in, is both urgent and gentle, dramatic and heart-rending.

Luckily most parents never experience the anxiety of their child being ill enough to need care in one of England’s 155 neonatal units. But between them they admit and help just over 50,000 newborns a year, about one in 12 of all babies.

One in eight admissions are babies born pre-term, under 37 weeks. Just over half were born at full term but have an infection, sepsis or have been starved of oxygen during labour.

“An extremely sick baby will be on a ventilator, will be fed by intravenous drips and will be having their heartbeat, breathing and temperature – all their physiological variables – continuously monitored,” says Neena Modi, a professor of neonatal medicine at Imperial College London and consultant at Chelsea and Westminster hospital.

“They will have to be turned at regular intervals. They need constant attention … With the best equipment in the world, you still need a nurse to provide that constant attention.”

Some babies stay only briefly on a neonatal unit, to ensure they start feeding properly. But with others the treatment can be the difference between growing up capable and independent or experiencing lifelong disability and reliance on others – or between life and death.

Some have been born so far before their due date that their vital organs, notably their lungs, are so underdeveloped that they need artificial support – oxygen from a ventilator – to grow. Until 2019 babies born before 23 weeks were deemed to be nonviable. The limit was lowered to 22 weeks, despite many paediatricians believing that advances in medical science did not justify the change.

Care is complex. As one paediatrician explains: “With these babies born at 250g or 300g, their skin is transparent. It’s wafer-thin. They’re humanoid almost. You can see their internal organs. You touch them and they bleed. They bleed very easily. So any intervention you do is traumatic to the patient and by extension to the member of staff doing it.

“For example, if you try and secure a breathing tube with any sort of adhesive, then it’s likely that when the adhesive comes off the cheek will come off as well, because they’re so fragile.” Their lack of subcutaneous fat means they get cold easily so are often placed in an incubator.

Doctors are in charge of neonatal units. But nurses do the monitoring and care-giving at the baby’s bedside, during shifts that typically last 12 hours, during which time they are usually alone and unsupervised. Many babies get 1:1 nursing care, or are meant to. “For the last 10 years neonatal units have been chronically understaffed. Staffing levels have remained terrible,” says Modi.

Data from the most recent edition of the National Neonatal Audit Programme, run by the Royal College of Paediatrics and Child Health, reveals a widespread – and worsening – shortage of specialist neonatal nurses. During 2021 just 74% of nursing shifts were staffed at recommended levels, down from 79% a year before. In some neonatal networks, or regional groupings of units, it was even worse, with just 61% of shifts fully staffed.

That lack of nurses is compounded by an England-wide shortage of neonatal cots. Modi argues that this helps explain why the number of babies admitted annually is stuck at about 50,000 despite a plethora of government and NHS initiatives over the years to improve neonatal outcomes including reducing preterm births, stillbirths and deaths.

Doctors rely hugely on nurses’ input when assessing a baby’s health and deciding on treatment, alongside vital signs, blood results and ward round observations. One says: “I would be far worse at my job without the nurses constantly having my back, because they spend a 12-hour shift with one child and will know that patient as well as a parent.”

This close relationship with newborns, and also their parents, who are often constant presences in the unit, helps explain why nurses and doctors choose neonatal care.

“You provide real continuity of care and you become a big part of the baby’s life,” says one medic. It can also appeal to people who want to be relied on and seen as heroes by relatives. “If you’re that sort of person, who needs to be needed, then it gives you plenty of opportunities to get that feedback you’re craving.”

Neonatal care is an emotional environment to work in. Staff can have a huge sense of fulfilment. “It’s heartwarming and nice to know you’ve been part of that child’s history. There’s great satisfaction from potentially saving a child’s life,” a doctor says.

But some babies face greatly reduced life expectancy or a lifetime of disability, despite the medical team’s best efforts. One in five babies born before 28 weeks gestation dies. However, mortality among those born between 28 and 32 weeks is much lower at 3%.

“It’s emotionally intense for parents to have a baby in neonatal care. They often describe it as a rollercoaster because they never know what’s going to happen next with their child, who can take two steps forward and then one step back,” says one paediatrician who has worked in neonatal medicine for 30 years.

“And it’s an emotionally taxing environment for the staff to work in too. There’s the close relationship with the baby and the parents. And not every baby does well. And sometimes they don’t survive. We have to deal with that.”

Staff learn to become philosophical, accepting the limits of what they can do. Another doctor puts it like this: “Knowing that your skills can potentially help save a child’s life is a big part of the attraction to work in neonatal care. And you save a lot more babies than you don’t – most survive.” 

Story by Denis Campbell Health policy editor: The Guardian: