7The neonatal experience
86.Over 100,000 babies are cared for in a neonatal unit each year in the UK. Neonatal care is when a baby is admitted to a specialist unit for babies who are born sick or premature to receive care that ensures they have the best possible chance of survival and quality of life. Sometimes parents are unable to hold their babies for weeks and when they do eventually get to take them home, they often have ongoing medical needs. The charity for premature babies and their families, The Smallest Things, told us:
We passionately believe that time spent in a neonatal unit, helplessly watching your fragile baby in an incubator covered in wires and tubes and surrounded by beeping machinery, should not count as parental leave. Not only is precious time with a newborn replaced by fear and worry over health issues (or even survival), but the journey does not end when (and if) a baby leaves hospital.152
87.A 2017 report by The Smallest Things found that nearly half of premature babies were re-admitted to hospital following discharge with 46% of parents reporting ongoing medical difficulties following premature birth. These parents are subjected to huge amounts of stress as they worry about their fragile newborn baby. Parents can spend valuable months of their parental leave commuting between home and the hospital, often at great financial cost, instead of bonding with their baby at home. Research by the charity for babies born premature or sick, Bliss, shows that 80% of parents felt their mental health was worse following a neonatal experience. Bliss told us that parents with a neonatal experience have higher rates of postnatal depression.153
Neonatal leave and pay
88.Parents are not currently entitled to take any extra leave when their baby receives neonatal care. However, the Government made a commitment in March 2020 to introduce neonatal leave and pay to give these parents more time to look after and bond with their babies.154 This shows that the Government recognises the specific circumstances of these parents and the often incredibly challenging situations they can find themselves in. The introduction of this leave is planned for 2023. When we asked whether the Government would bring it forward in light of Covid-19, the Minister could only commit to its inclusion in a forthcoming Employment Bill for which he could not commit to a time scale.155 This issue is clearly time-critical for parents of newborns who are in neonatal units.
The impact of the Covid-19 outbreak on the neonatal experience
89.In light of Covid-19, hospitals have had to make difficult decisions to protect staff and patients, including the sick and premature babies within neonatal units. We’ve heard that hospitals have differently assessed the risk and some have restricted visits to no more than a couple of hours or only to one parent.156 In some cases, we’ve heard that this had to be the same parent for the duration of their baby’s neonatal care.157 This has meant that mothers have gone unsupported within neonatal units and partners have been separated from their new-borns, sometimes for months. In the unfortunate situation where parents have had to self-isolate due to Covid-19 symptoms, mothers have been separated from their babies for two weeks.158 The charity for parents of sick and premature babies, Bliss told us that “this is likely to have a significant impact on parental confidence, and anxiety levels.”159 Bliss also told us about the importance of direct care from parents for babies who experience neonatal care:
Numerous studies have identified the long-lasting impact of neonatal care on babies and their families, in terms of long-term attachment and developmental outcomes, when parents are able to provide direct hands-on care to their baby. Evidence has shown that long periods of direct care lead to increased weight-gain and improved breastfeeding rates, and skin-to-skin care has been linked to better infant reflexes at term and better gross motor development at 4–5 years.160
90.When we pressed the Minister on some of the really difficult challenges that many parents have faced, for example where only one parent has been able to go and visit the child during the period of hospitalisation, he said:
I know that a number of neonatal units have reduced visitors, but in some ways that can actually be a good thing because they can spend more time with both parents. It should not be the partner, or one parent or the other, who is considered a visitor. I want to make that clear, but I appreciate the evidence you are getting on that point.161
Suggesting that visitor restrictions can “actually be a good thing” highlights a serious lack of understanding of what the reality has been for many of these parents.
91.We can’t imagine the toll that these restrictions have taken on parents who were already dealing with an extremely distressing situation. This of course has been exacerbated by the other impacts of Covid-19 and the lockdown. During their darkest times, these parents have struggled to access professional support that would normally be available and have been unable to see family and friends who would normally be rallying around and doing everything possible to support them. Many have also had additional financial pressures such as job losses, and the anxiety and stress that the pandemic has brought to everyone. Ongoing medical issues mean that these babies on release from hospital often have to be shielded to protect them from Covid-19. So even as the lockdown restrictions are being lifted, many will still be unable to receive valuable support from family and friends. Bliss told us:
While going home is always exciting, it can also be daunting. Parents often describe going home as the point in their journey where they begin to process what they have been through. Due to COVID-19, neonatal outreach and home visiting services are largely unavailable and due to ongoing societal wide social distancing measures, they will not have the support of their wider family and friends. As such, it is important that both parents are able to have the time away from work to adjust to life at home, and to form those important bonds with their baby in the home environment.
We also heard from many new mothers through our survey who had spent time with their babies in neonatal care.162 One mother told us:
I had my baby 10 weeks prematurely in January, my baby came home 2 weeks after lockdown. Due to infection control in the NICU only parents are able to hold the baby […] then after 70 days in the NICU he finally comes home and is [still] unable to see family. My mental health has definitely been affected and I feel alone and scared at a time when I need the most support. I feel like I’ve been deprived of time that we won’t ever be able to get back.163
Through its helpline and engagement, Bliss hears directly from parents. It shared a case study of a mother who contacted them when her baby had already been in neonatal care for over a month:
She was going to have to end her maternity leave earlier than she wanted to, due to her partner being self-employed and unable to work because of Covid-19. The lack of available financial support means the household will be unable to cope on maternity pay alone, or during the final 13 weeks of unpaid leave. This will reduce drastically the time she has at home with her baby, once they have been discharged from the neonatal unit.164
There are also those parents who have had to shield due to underlying health problems who have been unable to visit their babies in hospital,165 and those who have had to self-isolate after presenting with Covid-19 symptoms. Bliss have said that if these parents had access to rapid testing this could mean they don’t need to wait the full two weeks to see their children.166
92.We welcome the Government’s recognition that special neonatal leave and pay should be introduced for all parents who find themselves in this situation. The Government plans to include provisions in its forthcoming Employment Bill to introduce this reform in 2023. In advance of the planned delivery of neonatal leave and pay in 2023, the Government should pilot the introduction of these reforms for those affected by the Covid-19 outbreak. If a success, the date of the general introduction of these measures could be brought forward.
93.We welcome the Government’s introduction of testing for members of the public. However, priority testing should be made available for parents of babies in neonatal care. No parent should be separated unnecessarily from their newborn for any longer that they need to. The Government should prioritise rapid testing for parents of babies in neonatal care.
154 Department for Business, Energy and Industrial Strategy, Good Work Plan: Proposals to support families, 2019
162 Annex 1
163 Annex 1
165 Informal discussion with The Smallest Things
Published: 6 July 2020