Babies being looked after in hospital
Early impressions of neonatal units
Seeing their baby in a neonatal unit was a shock for some of the people we interviewed. Some felt bad for not recognising their newborn baby. Samantha X’s baby had “lots of things going into her, she had a mask on her face, so I couldn’t really see what she looked like”. Sarah felt helpless: “you just want to protect them and you wish that they weren’t going through it”. Lyndsey didn’t take photos of her baby whilst he was in the incubator as she “didn’t really want to remember him that way”.
For most of the people we spoke to, neonatal units were unfamiliar environments. Emma found it very noisy and upsetting seeing all the sick babies. Michael was also struck by the “constant sort of beeping and buzzing of different machines in the background”. Although Aileen was familiar with the environment as she is a neonatal nurse, her experience as a mother with a poorly baby gave her insights into what it is like to be a parent in a NICU. Visiting a neonatal unit
Some women had known in advance that having a caesarean section would mean they couldn’t drive for several weeks. So for women who were discharged, this could make getting to and from the hospital very difficult. Sometimes their partner or other family members helped with lifts, but this wasn’t always possible. Women described the various solutions they came up with to manage this situation – from long bus rides, walking or taking occasional taxis until they could drive again.
Women often tried to spend lots of time with their baby. However, visiting hospital for long stretches of time could be exhausting and especially when they were themselves recovering from illness and birth. Samantha X’s baby was in SCBU for seven weeks and she developed a routine with her husband for their visits: “the longer it went on, the easier it was”. Sometimes their baby had to be transferred to another hospital. Aileen’s baby was transferred and although she was supposed to be transferred at the same time, there was a delay with the transport arrangements: “I was just beside myself” and felt “betrayed”. This could mean an even longer journey to visit.
Women’s friends and wider family sometimes wanted to come into the hospital and meet the new baby. However, restrictions on neonatal units meant this wasn’t always possible, partly because of the risk of infection to the babies. Sometimes women didn’t want their family or friends to visit and a few women said they didn’t feel ready to talk to other people about the situation straightaway.
Holding and caring for their baby
Sometimes parents weren’t able to touch their babies at all for some time, because they were so premature or unwell. Tracey was only able to put a finger through to the incubator and “watch her open her eyes maybe once or twice a day, and she'd soon close them again”. Betty could only give her baby “just a pat; you couldn’t stroke”. Some women, such as Kay, were allowed to try ‘containment holding’ to “cup” their babies.
Finding ways to be involved could be difficult for parents, as it often felt like care of their baby had been handed over entirely to the nurses. Some women felt marginalised by needing to ask for permission and get help with touching or picking up their baby. Dominie remembered a time when “one of the nurses in special care said to me, “I've just settled your child so you won't be getting him out today,” [… and I was] very taken back”. Kay found there often weren’t enough nurses on the ward to help get her baby out of the incubator. But some women said the nurses did well to include them. Betty said “it was nice to be involved” and thought it helped free up some of the nurses time to focus on other tasks. But experiences varied from hospital to hospital. After her baby was transferred to a second hospital, Betty found the nurses “a lot more militant” about her taking on the care work.
Women and their partners sometimes felt nervous about doing things for their babies initially, so watching the nurses gave them a chance to observe and build confidence. Helen X explained how she had lots of support and “advice on nappy changing, breastfeeding, this and that, just by being at the hospital”. Having nurses there to take care of the physical issues also meant that women could focus more on bonding and getting to know their babies. Betty found it gave her a chance to recover too: “I got a lot of sleep, I was able to convalesce, I ate healthily and I had experts teaching me the ropes. So, on the plus side, I felt more prepared when he actually came home”. Changing nappies, breastfeeding and/or expressing milk, skin-to-skin, bathing and dressing their babies were all ways that women were sometimes involved in looking after their babies. This allowed them to have physical contact with their babies, spend time together and bond. One way Paige tried to “feel closer” to her baby was by swapping a soft toy from her bed to her baby’s cot and vice versa “so I could smell her and she could smell me”. Emotional and practical support
Women often talked about the support they received from the nurses on neonatal units. Kay described them as “amazing”. You can read more about the support from health professionals, including nurses, here.
Some units provided space for the parents and families of poorly babies. These included family rooms, kitchenettes, and sometimes overnight accommodation for parents who were due to take their babies home in the next day or so. Julie’s hospital also arranged for talks from parents whose babies had previously been in a neonatal unit. Babies discharged from hospital
Women and their partners looked forward to when their baby would be healthy enough to come home so, as Kate said, they could be “a proper little family”. But this could be a scary transition and some women worried in case something went wrong.
Some babies had ongoing health concerns and needs even after discharge and needed regular checks at the hospital or GP. But some had no lasting impacts from being born prematurely or being unwell when very little. Kate described her son as a “strapping lad now. You wouldn’t know that he was forced to be a month early”.