Premature babies: a new type of care

03 October 2017

More premature babies are surviving, but with complex health needs. Community practitioners play a vital role in giving support, says journalist Anna Scott.

The positive facts: two large-scale pieces of research in recent months have said that the outlook for premature babies is improving.  

A US study (Younge et al, 2017) found that survival rates for extremely premature babies born between 22 and 24 weeks of pregnancy are showing small but measurable improvements compared to those born a decade earlier.  Not only did 36% of infants born between 2008 and 2011 survive compared to 30% of those born between 2000 and 2003, but the proportion of babies living without moderate or severe neurological impairments also improved over the 12-year study from 16% to 20%.

A French study (Pierrat et al, 2017) looking at similar data found that 80.5% of babies born between 22 and 34 weeks in 2011 survived without severe motor or sensory impairments compared to 74.5% born in 1997, and that survival rates had increased most for those born earliest.


Developmental issues

More premature babies may be surviving and living longer – especially those born extremely preterm – but they are also presenting with particular needs, ones that health visitors and community nursery nurses need to be aware of. 

‘Developmental delays are common among children who were born before
28 weeks of gestation,’ says Noelle Younge, assistant professor of pediatrics at the Division of Neonatology, Duke University Medical Center, North Carolina, and co-author of the US study. 

‘Some of these extremely premature infants have mild developmental delays in early childhood and will catch up to their peers by school age, while others have persistent developmental problems, including cognitive delays, problems with motor development including cerebral palsy, and vision impairment. Each of these neurological or developmental problems can range from mild to severe.’ 

Extremely premature babies also often have a difficult time during their stay in intensive care, so even those born without significant developmental delay may face a range of challenges when they go home, adds Andrei Morgan, post-doctoral fellow at EPOPé at CRESS, Paris, and co-author of the French study.

‘Feeding is a common issue, and children born before 32 weeks are often smaller than they might have been otherwise,’ says Andrei. ‘Similarly, they may be more prone to infection due to less-developed immune systems when they were born. As the children get older, more subtle problems may become apparent. For example, there is a higher rate of hyperactivity and attention deficit among those born preterm. Some of these risks and challenges may be mitigated if there is sufficient support available to the child,’ he says.


Later life issues

Children’s charity Action Medical Research is funding a variety of research projects into the issues premature children face as they grow up, including anxiety. Dr Tracy Swinfield, the charity’s director of research, explains: ‘Many children who were born very prematurely, before 32 weeks of pregnancy, have learning difficulties, and babies who are born this early are also thought to be nearly twice as likely to have problems with anxiety during adolescence. They’re also more susceptible to some health problems during adulthood, such as high blood pressure and diabetes.’

These kind of lifelong issues faced by the 9522 babies born in the UK each year before 32 weeks of pregnancy will become apparent to community healthcare professionals caring for premature babies and their families (Public Health Intelligence Unit, 2016; Office for National Statistics, 2016; ISD Scotland, 2015). The 49,453 babies born moderate to late preterm – between 32 and 37 weeks – also potentially face a range of health issues, but any complications typically decrease the longer the gestation period (Public Health Intelligence Unit, 2016; Office for National Statistics, 2016; ISD Scotland, 2015). They and their families often still require emotional and practical support from community healthcare professionals.


Emotional support

‘Following discharge from the neonatal unit, the preterm baby’s health and development needs to be closely monitored,’ says Zoe Chivers, head of services at the premature and sick baby charity Bliss. ‘It’s important for health visitors to empathise with the parents of premature babies by keeping in mind that they have just been through the emotional rollercoaster of having a child in hospital.’

In practice this means supporting the family through any emotional or mental health concerns they may have, providing continued support to them and validating their parenting skills. Zoe says that while offering support to families might feel tricky when ‘the parents are experts in the medical conditions of their baby’, health visitors ‘can play a major role.’

The team lead for children’s disability nursing at NHS Greater Glasgow & Clyde, who also has a health visiting background, agrees that community practitioners need to be very involved in providing early support to parents and developing trusting relationships through which they can recognise and respond to concerns.

‘The emotional impact of surviving a premature experience is huge and parents experience anxiety when coming home from a supportive hospital environment where staff have provided direct care to parents who now have sole responsibility for that care,’ she says. ‘They will have to learn new skills, some of which may be quite complex and technical, in order to care for their child.’

Health visitors are ideally placed and can play a major role in providing emotional support to parents, ‘and help to reduce their anxieties and manage their range of emotions, which may include shock, fear, grief, love, joy, blame and guilt’, says Lindsay Bevan, health visitor practice teacher from the Preston Central Team, Children and Young People’s Wellbeing Network, Lancashire Care NHS Foundation Trust.


Practical support

Health visitors can also help parents with premature babies still in hospital. ‘Parents may experience financial difficulty and need time off work,’ says Lindsay. ‘They may also have issues travelling to and from the hospital, especially if the baby has been transferred to another hospital which is a significant distance from the family home. Parents who have other children will often express feelings of guilt that they are away from their other children for long periods and may experience problems in finding childcare when visiting the hospital.

‘The health visitor can also provide information on preparing the home environment for the baby, and advise around issues such as room temperature and appropriate clothing.’

Premature babies will often require closer monitoring of their weight, so health visitors should be available to provide support regarding a variety of issues such as feeding (particularly for mothers who are expressing milk), promoting development (including infant brain development), immunisation, safer sleeping guidelines, car seat safety and reducing the risk of infection. ‘Practitioners are also vital in signposting parents to organisations where they can access help, advice and support,’ adds Lindsay.


Complex caseloads

All this of course means an increase in workload for community practitioners. ‘And when we consider babies who have complex or exceptionally complex health needs as a result of their prematurity,
these children and their families will require a high level of support throughout their lives,’ says Lindsay.

So health visitors and community nursery nurses need to be aware of the risk factors associated with prematurity, while also recognising that parents are the experts in their child’s care. However, community practitioners will be expected to be as involved in particular family situations as much as they feel is necessary, depending on the needs of the baby and the family. ‘Many families will receive support from hospital outreach teams when their baby is first discharged home, and they will take the lead on the baby’s care,’ says Lindsay. 

‘They will provide advice around many clinical issues such as giving medications, monitoring baby, resuscitation and tube feeding. Health visitors provide more family-centred care to ensure that the families’ social and emotional needs are considered, and will continue to provide support where required when the baby has been discharged from outreach care.’

What is particularly important is that parents are informed, involved and supported in all aspects of their babies’ care and decision-making.

As neonatal research continues to examine improvements to long-term outcomes and to the care provided to premature babies during and after their tay in hospitals, community practitioners play an essential role in ensuring they understand how they can best care for children and their families.

For more on the subject, read the Community health professionals’ information guide at bit.ly/Bliss_CP

Need to know

Premature babies may be discharged from hospital with a range of health issues and conditions that are documented on their discharge letters, including:

Bronchopulmonary dysplasia (BPD) A long-term lung condition caused by scarring to the lungs, with symptoms of rapid, shallow, breathing and shortness of breath.

Hypoxic-ischemic encephalopathy (HIE) Lack of oxygen and/or blood flow to the baby from the placenta during birth that can damage the brain and hypoxia can also affect the lungs, liver, heart, and kidneys. Symptoms include being hyper-alert, irritable, eye-rolling and abnormal movements.

Intrauterine growth restrictions (IUGR) A condition in which the baby’s growth slows or stops in utero, often caused by placental failure. Usually diagnosed during antenatal appointments.

Necrotising enterocolitis (NEC) The wall of the intestine is invaded by bacteria, which cause local infection and inflammation that can ultimately destroy the wall of the bowel (intestine). Such bowel wall destruction can lead to perforation of the intestine and spillage of stool into the infant’s abdomen.

Neonatal respiratory distress syndrome (NRDS) Other names include hyaline, membrane disease and surfactant deficiency lung disease. NRDS occurs when babies don’t have enough respiratory surfactant (proteins and fats) to keep the lungs inflated. Symptoms include blue-coloured lips, fingers and toes, rapid, shallow breathing, flaring nostrils and a grunting sound when breathing.

Retinopathy of prematurity (ROP) Associated with excessive oxygen during the early weeks of a premature baby’s life causing retinal blood vessels to grow too quickly.

Respiratory syncytial virus (RSV) A virus causing cold-like symptoms which can cause breathing difficulties if lungs are affected.

Small for gestational age (SGA) Birthweight that is lower than 90% of babies of the same gestational age.

(Sources: Bliss, 2017; Children’s Hospital Los Angeles, 2017; NHS Choices, 2017; Tommy’s, 2017)


Bliss. (2017) Medical conditions and procedures. See: bliss.org.uk/medical-conditions-and-procedures (accessed 19 September 2017).

ISD Scotland. (2015) Maternity and births table 5 – Live births (all, single and multiple) by birthweight and gestation. See: isdscotland.org/Health-Topics/Maternity-and-Births/Publications/data-tables.asp?id=1543#1543 (accessed 19 September 2017).

NHS Choices. (2017) Neonatal respiratory distress syndrome. See: nhs.uk/conditions/Respiratory-distress-syndrome/Pages/Introduction.aspx (accessed 20 September 2017).

Office for National Statistics. (2016) Statistical bulletin: birth summary tables, England and Wales: 2015. Live births, stillbirths, and the intensity of childbearing measured by the total fertility rate. See: ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/livebirths/bulletins/birthsummarytablesenglandandwales/2015 (accessed 19 September 2017). 

Public Health Intelligence Unit. (2016) Children’s health in Northern Ireland. See: publichealth.hscni.net/sites/default/files/RUAG%20report%202015-16%20-%20Childrens%20Health%20in%20NI%20-%20FINAL%20REPORT%20-%20May%202016.pdf (accessed 21 September 2017). 

Pierrat V et al (2017) Neurodevelopmental outcome at two years for preterm children born at 22 to 34 weeks’ gestation in France in 2011: EPIPAGE-2 cohort study. BMJ 358: j3448.

Tommy’s. (2017) Pregnancy complications. See: tommys.org/pregnancy-information/pregnancy-complications (accessed 19 September 2017).

Younge N et al. (2017) Survival and neurodevelopmental outcomes among periviable infants. The New England Journal of Medicine 376: 617-28.

Picture credit | Shutterstock

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