Features

An early start

05 July 2019

More babies are being born extremely premature. While these babies can often face health and developmental issues, their families can also be affected by anxiety and depression. So it’s vital that CPs offer support. Journalist and mum of twins born prematurely Linsey Wynton reports.

One in every 13 babies born in the UK now arrives prematurely, before 37 weeks of pregnancy, and there’s been a rise in those born before 23 weeks. Babies arriving at less than 34 to 36 weeks can spend weeks, or months, in neonatal care (NHS, 2018; Bliss, 2018a; 2017).

In England, Scotland and Wales, almost 27,000 babies born between 33 and 36 weeks were admitted to neonatal care, as were more than 10,000 born between 26 and 32 weeks, and almost 1200 born at less than 25 weeks. In Northern Ireland, almost 2000 premature babies received neonatal care (Bliss, 2017).

Multiple birth rates have also risen over the last 20 years. Twins, triplets and quads are more likely to be born prematurely and are seven times more likely to be admitted to neonatal care (Tamba, 2019; 2016; Bliss, 2017).

Early Days

Premature babies’ survival rates have vastly improved in recent decades, but there was a slight decrease in the last two years in England and Wales because of a rising number of babies born at less than 23 weeks (Bliss, 2017; Keeffe, 2015; NHS, 2012).‘Premature baby survival rates compared to 20 years ago are amazing,’ reveals Bliss trustee and senior neonatal intensive care sister Amy Overend. ‘I had a 22-weeker go home – 10 years ago that would probably not have happened.’

She continues: ‘Premature babies are surviving and thriving much more than before because we have changed how we care for them [McDonald, 2017; NCBI, 2017; NICE, 2016; Keeffe, 2015]. For instance, before mothers deliver preterm babies they now receive steroids to mature their baby’s lungs, and magnesium sulphate to protect their baby’s brain.’

North-east London health visitor Pam Allanson says: ‘There have been so many babies born prematurely on my caseload. Although the birth rate in the UK is dropping, we are seeing more extremely premature infants who have survived or undergone complex surgeries with very good outcomes.

‘Some have been induced due to complications with their mothers’ health or with the infants’ development – perhaps intrauterine growth restriction. The earlier an infant is born, the higher the risk of complications.’

HVs will, of course, normally meet premature babies and their families after they leave hospital. If a baby is going home with oxygen or feeding tubes, HVs are often invited to the discharge meeting. But as Amy says: ‘HVs cannot always make it – as they are stretched – however, when they [do] come [they get] a really good insight.’

Most babies leaving neonatal care will be visited by a neonatal outreach nurse. Those with complex needs will later be transferred to the paediatric outreach team.  

So, what is the best support health visitors can offer families of babies born prematurely?

Weaning and Development

Amy says: ‘[For HVs] it is understanding that a premature baby is not just a very small baby, they are a complex patient – all their systems were premature when they were born, so they have had to learn to suck and learn to breath.’

Premature babies can also take longer to feed than full-term babies. Amy explains: ‘With a healthy full-term baby there is loads of information on weaning, but it can be very different when you’ve had a premature baby. Having the HV help parents to find the information is invaluable.’

‘HVs are [also] usually the best people to see developmental delays if there are any – they are going to notice if baby is not rolling when they should be, and they can then offer support or refer them on to specialised teams like physios and occupational therapists.’

Health issues and disability

Nearly half (48%) of premature babies were re-admitted to hospital following discharge home from neonatal care (The Smallest Things, 2017). Amy says: ‘HVs should assure parents not to be afraid to bring them back to hospital.’

Babies born before 37 weeks are at increased risk of sudden infant death syndrome (Lullaby Trust, 2019). Amy says: ‘It is important HVs put forward safe sleeping messages.’

She adds: ‘There is only so much neonatal nurses can do when babies leave hospital. There are all sorts of issues that can befall a premature baby, from cerebral palsy and hearing loss to retinopathy of prematurity, which could mean they potentially need laser eye surgery or they may even be blind. It is vital that HVs help parents to understand these complications and manage them.’

Signposting

HVs can also encourage parents to contact relevant support organisations, such as Bliss and Bliss Scotland, for support online and locally.

HVs in Northern Ireland can also refer families to the charity Tiny Life, which offers a range of support in neonatal units, in homes and in the community, such as in parent support groups.

Alison McNulty, chief executive of Tiny Life, says its service is unique. ‘A volunteer visits families of premature babies for up to four hours a week to help meet the family’s needs,’ she explains. ‘Mum might need a sleep, a shower or to spend time with other children.’

Tiny Life also offers training for HVs in Northern Ireland on supporting families with premature infants. Its online resource, Life at home, developed by leading academics and parents, includes programmes on child development and physiotherapy for premature babies, and a perinatal mental health programme for parents. Alison says it is relevant for parents and HVs across the UK.


Parental mental health

On the impact on parents, Alison says: ‘Parents of premature babies are more likely to suffer from PND and post-traumatic stress disorder, higher levels of anxiety and lose their social networks. We know that parents have this survival guilt – ‘My baby survived – I should be OK.’ Others don’t feel like the baby is theirs because their baby has been institutionalised in hospital for so long and they have had issues with bonding and attachment.

‘Parents told us that either they got a really good HV, or an HV who isn’t clued in. Sometimes that is not the HV’s fault because there is very little, if any, training within current health visiting specific to premature babies, or they may not have had a premature baby on their caseload.’

Amy adds: ‘HVs can help with psychological support for parents after they have gone through that really stressful [separation] time in the neonatal unit.

‘As HVs are there to help with the developmental side, they can be the biggest emotional support to parents in saying “Your baby was really unwell, but actually they are hitting this milestone” – which can be a really positive force.’  

Reaching school age

As many as 44% of babies born prematurely had special educational needs when starting school (The Smallest Things, 2017). Samantha Johnson, professor of child development at the University of Leicester, has developed a resource with Action Medical Research for school staff and SNs to highlight the educational and health needs of school children born prematurely.

She says: ‘Children born preterm are at increased risk of general cognitive problems, alongside an increased risk of attention problems, poor social skills and withdrawn behaviour, and anxiety or other emotional problems.

‘We have also shown that, compared with children born at term, very preterm children have poorer academic attainment and a higher risk for special educational needs.’

‘A child born prematurely could need help with long-term stomas and percutaneous feeding tubes,’ Amy says. ‘Even coughs and colds can be potentially life-threatening for children born prematurely because their lungs are not as well developed and they are more susceptible to things like asthma.’

She advises SNs to ‘dig deeper if you know they were premature. It’s a red flag to think: “Do I need to keep a closer eye on them?”’ 

Tips for HVs… from an HV


London-based health visitor Pam Allanson recommends that you:

  • Do your homework on any condition the baby may have before meeting their family
  • Make time for appointments, especially for premature twins Pam also recommends that you should offer families:
  • Realistic expectations around development and milestones
  • Understanding of the immune system and importance of hygiene
  • Knowledge of health conditions that could affect their baby
  • Knowledge of screening and appointments
  • Encouragement for traumatised parents and, if necessary, referrals for help
  • A phone helpline
  • Encouragement to eat well, sleep and keep some routine.

First-hand accounts


‘My HV has been fantastic’

Bliss volunteer Coady Dorman from Lothian in Scotland gave birth at 29 weeks to her son Matthew (now four) after developing pre-eclampsia and HELLP syndrome.


She says: ‘My HV has taken care of Matthew from two weeks after discharge up until today. From the start she made me feel that it was normal to experience the things that I was experiencing – anxiety and flashbacks – and she liaised with my GP, who referred me to a psychologist to get me a bit of extra support for the birth trauma.

‘Matthew has very low weight gain and is on a special diet with supplements, and my HV comes to weigh him every month. She has put extra pages in Matthew’s “red book” and, if he loses weight, this information goes to his paediatrician and dietician. She also calls in to check if he has had an admission to A&E, as his lungs and immune system are slightly weaker than his peers.

‘I was concerned that Matthew had an autistic spectrum disorder and the HV was really proactive about getting referrals to the speech and language therapist, and then to the child development clinic. ‘HVs need to recognise that – even if the baby is healthy – support is still there for parents to make sure the ultimate wellbeing of the whole family is the best it can be.’ 


‘My HV didn’t understand’

Catriona Ogilvy is the founder of The Smallest Things premature baby charity. Her first son was born at 30 weeks.


She recalls: ‘Samuel’s arrival was very sudden – I was in complete shock being in neonatal intensive care. He spent eight weeks on the unit and was on a life support machine for the first five days. When I finally got to hold him, I was frightened by the sound of alarms ringing as his saturations dropped.

‘I expressed every three hours, but struggled with my milk supply and topped up with formula. I still remember my first visit from the HV. She ticked a box that said ‘mixed feeding’ with no words of appreciation for how hard it can be to establish feeding in neonatal intensive care.

‘Each visit to the clinic I reminded the HV to plot my baby’s weight according to his corrected age and each visit I longed to tell her that I was far from OK, that I had flashbacks to our time in the newborn intensive care unit.

‘I wasn’t asked about my experience or how I was doing. I felt isolated and alone and I quickly stopped going to see my HV. I didn’t feel they understood the specific needs of a baby born prematurely, nor my emotional needs. I found the clinics more difficult than they were helpful, and I missed out on the emotional and feeding support I really needed.’


Multiple prematurity


Half of the twins born in the UK are premature and need neonatal care (Tamba, 2019; 2017). Meanwhile, one in five parents of multiples have experienced PND (Tamba, 2017). Gemma Gunter, Tamba’s Helping Hands support practitioner, says: ‘Practical support is useful during the HV’s visit. Lots of families say to me: “HVs just sit and talk to me and then I am way behind in everything.” It is much better if an HV can say: “Do you want me to feed a baby while we are talking?”’

Ben Rean, a paramedic and father of twin girls born 11 weeks early, says the support he and his wife Tabby most needed after six weeks in neonatal concerned feeding premature twins with colic, as it was ‘exhausting and very upsetting to try and keep any of their milk down’. Unfortunately, he says, their HV lacked experience with premature babies.

Gemma recommends HVs visit families of premature multiples at home to weigh them for their first few months. She says: ‘It is very difficult for some parents to get out and many are worried about taking premmies out because they do not want them back in hospital. When you have multiples and you end up with one back in hospital and one at home, then you are split.’

Tamba believe continuity of care is vital. Gemma says: ‘An HV can say: “When I first came here you were feeding every one and-a-half hours, now you are feeding every four hours.” As a sleep-deprived multiple parent you are not able to have that perspective, and it can help with confidence.’

Gemma from Tamba has this advice for HVs:

  • Read through Tamba’s factsheet for HVs on multiples.
  • Advise families to take all offers of help.
  • Signpost families to support groups, including local twins clubs.
  • Check if families are eligible for support from Tamba’s Helping Hands, perhaps to help families with one baby in hospital and one at home, or parents of triplets struggling to get out.
  • Signpost parents who have lost a baby to Tamba’s bereavement support group, made up of parents who have lost one or both their twins who offer befriending support.
  • Refer parents of multiples, where one or both have a disability, to local support groups and, where relevant, to acknowledge how difficult it must be to see one child meeting milestones and the other child not.
     

My story

Linsey Wynton says: ‘My identical twin boys were born at just 29 weeks, after twin-to-twin transfusion syndrome (an uneven blood supply through their shared placenta), and emergency laser surgery in utero at 24 weeks to save their lives. After eight weeks in neonatal care, they were discharged.

I was fortunate to have a helpful HV. She came to my home several times to weigh them, she reassured me it was normal for premature babies to make funny noises while they slept. While I had to find another mum of twins to help me with the challenge of breast-feeding two prem babies with little head control together, I called my HV for help when one of my babies started refusing a bottle and breastmilk.’


Resources


References:
 


Action Medical Research. (2019) Preterm birth information for education professionals. See: www.pretermbirth.info (accessed 25 June 2019).

Bliss. (2018) Infant mortality rate in England and Wales increases for first time in five years. See: https://www.bliss.org.uk/news/infant-mortality-rate-in-england-and-wales-increases-for-the-first-time-in-five-years-bliss-responds (accessed 25 June 2019).

Bliss. (2018b) Bliss releases new research on mental health. See: bliss.org.uk/news/bliss-releases-new-research-on-mental-health (accessed 25 June 2019).

Bliss. (2017) Statistics about neonatal care. See: https://www.bliss.org.uk/research-campaigns/research/neonatal-care-statistics/statistics-about-neonatal-care (accessed 25 June 2019).

Keeffe P. (2015) How modern medicine is saving the lives of premature babies. See: https://www.healthline.com/health-news/how-modern-medicine-is-saving-the-lives-of-premature-babies-101415#1 (accessed 25 June 2019).

Lullaby Trust. (2019) Reducing the risk of SIDS for premature babies. See: https://www.lullabytrust.org.uk/safer-sleep-advice/premature-babies (accessed 25 June 2019).

McDonald SD. (2017) Antenatal corticosteroids for women at risk of preterm delivery. BMJ 356. See: https://www.bmj.com/content/356/bmj.j1467 (accessed 25 June 2019).

NCBI. (2017) Antenatal corticosteroids for accelerating fetal lung maturation for women at risk of preterm birth. Cochrane Database of Systematic Reviews 21(3): CD004454. See: https://www.ncbi.nlm.nih.gov/pubmed/28321847 (accessed 25 June 2019).

NHS. (2018) Special care: ill or premature babies. See: nhs.uk/conditions/pregnancy-and-baby/baby-special-intensive-care (accessed 25 June 2019).

NHS. (2012) Premature birth survival rates on the rise. See: https://www.nhs.uk/news/pregnancy-and-child/premature-birth-survival-rates-on-the-rise/#where-did-the-story-come-from (accessed 25 June 2019).

NICE. (2016) NICE calls for increased use of magnesium sulfate in preterm labour. See: https://www.nice.org.uk/news/article/nice-calls-for-increased-use-of-magnesium-sulfate-in-preterm-labour (accessed 25 June 2019).

Tamba. (2019) NICE works: the final report. See: https://www.tamba.org.uk/file/NICE-final-report.pdf (accessed 25 June 2019).

Tamba. (2017) A health visitor’s guide to twins, triplets and more. See:  https://www.tamba.org.uk/document.doc?id=29 (accessed 25 June 2019).

Tamba. (2016) Key statistics on multiple births. See: https://www.tamba.org.uk/document.doc?id=782

The Smallest Things. (2017) Life after neonatal care. See: https://thesmallestthingsdotorg1.files.wordpress.com/2017/05/life-after-... (accessed 25 June 2019).

Tiny Life. (2017) Life at home with your premature baby. See: http://lifeathome.tinylife.org.uk (accessed 25 June 2019).


Image credit | iStock

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