After long, anxious days and weeks in hospital, bringing their baby was home was a huge relief for parents. Jane described it as a ‘glorious day’. Mary said having her son home with just her and her husband and no doctors and nurses, was really ‘quite special’. Zoe said, ‘I loved to be home. I loved the fact that I could get up in the morning and not have to get dressed and showered before I went to go and see her, and it wasn’t like visiting my daughter.it was just being able to get up in the middle of the night and give her a cuddle and take her to bed in the morning to have cuddles, watch TV and I loved it.’
Coming home was a big step towards normality, but it wasn’t always plain sailing. There were practical and emotional hiccups along the way.
Several parents described how daunted they were at bringing home their baby who had been so sick in hospital. Would they be able to cope?
‘I was very concerned about how I was going to cope, because I was aware that not only would I have kind of full time looking after this still very poorly baby, but also that I would then be needing to do the normal stuff.’ Jane
‘It was actually quite daunting, because we had no nurses either to help us.’ Shanise
The transition from watching their baby being so closely monitored by machines and nurses in the hospital setting, to normal, unmonitored home life, could be frightening. But despite these initial fears parents said that after a settling-in period, and learning what to do, they established a new home routine.
Feelings of isolation could continue even when parents were home. Although well enough to be discharged from hospital, babies might not be strong enough to be allowed round other babies and children, so parents were stuck at home, not able to take them out. If their baby was still on oxygen or there were lots of medications to give at different times of the day this limited what people could do. Mary kept her son away from playgroups and was afraid to take him out for long periods while he still had his stoma*. Once he had his operation to reverse the stoma, ‘we kind of were restored to more of a normal social life’. Jane was really grateful for the visits from a home help who provided social support for her.
Parents had to get used to a new role once they were home; they were carer, nurse and an advocate responsible for co-ordinating their baby’s care. There were daily caring tasks to do – nappy changing, feeding (sometimes through a feeding tube), changing dressings, changing oxygen cylinders and giving medications. But also medication and equipment to order, appointments to make and attend. Parents were also now responsible for monitoring their baby’s health, alert for signs or symptoms that meant they might need to rush back to hospital. Several parents we spoke to had to take their baby back to hospital (see ‘Follow up and setbacks after neonatal surgery‘). It was often a very intense period. ‘You’re basically just being a nurse’. For some, the schedule was very busy. Fiona said she had to get up ‘Every four hours, I used to sleep with the light, my bedside light on, sitting up.’
Parents becoming experts
After several weeks or even months playing second fiddle to the nurses and doctors in hospital, being home was when parents were finally in the driving seat. They soon became experts in providing care for their baby, and recognising signs when they weren’t well. Mike said he became the ‘dressing king’; after a rocky start. Jane became an expert at dressing her daughter’s exomphalos*, ‘treating and dressing it was still a bit of a skill. It got easier and easier and it’s a real shame. I’m now one of the finest exomphalos wrappers in [county] and it’s not a skill that’s really going to be used that much, is it?’
Mary mastered changing her son’s stoma dressings; Claire learned how to look after her son’s tracheostomy; parents of babies with Hirschsprung’s disease* learned how to do bowel/rectal wash outs and researched the best creams to treat the terrible nappy rash their babies often had. But it could be daunting being responsible for the care of their sick baby.
It was often very hard work looking after their baby’s extra needs at home. This extra care mostly fell to mothers, as fathers were often back at work after taking extra time off while their baby was in hospital. ‘Obviously, we both did it but [wife] had to do the lion’s share because, obviously, I was working full time,’(Mike). Donna decided to take voluntary redundancy after her son’s operation for Hirschsprung’s disease, ‘cos we didn’t know, again we don’t know where he’s gonna be in a year’.
Getting towards normal
Finding the balance between the medical needs of their baby and wanting to get back to normal life could be a struggle. Nicky said she was so thrilled to be able to do ‘some normal things’ with her son, like baby massage. She finally started to feel ‘detached from that episode [in the hospital] if you like, so I think we are more fully in the normality of whatever that might be than the sort of medicalisation.’ But this wasn’t always an easy transition. Victoria described how stressful it was bringing her baby home, and how it has taken her a while to build confidence in being able to look after him.
After being cared for in specialist hospitals, parents often found that the community or district nurses did not have the expert knowledge they needed, although Jane did have great support from a ‘fabulous’ specialist paediatric nurse who came to the house every day for a while. Being able to phone or see consultants or specialist nurses was really valued at this time by parents. ‘We found that the community children’s nurses actually didn’t have any or much experience of exomphalos* or tracheostomy* care, so we were on our own.a lot of the time [son’s] consultants are very good and they made themselves extremely accessible to us. So they would keep in touch with us by email.’ Claire
Some talked about being able to take their baby back to hospital to be checked if concerned. Emma said having open access to the ward where they can turn up with their baby and see doctors who know their baby was so important. Mary could see the stoma nurse at the hospital the same day if she was concerned (see ‘Follow up and setbacks after neonatal surgery‘).
The babies of the parents we talked to had a wide range of conditions and therefore had different paths to recovery. While some parents needed to remain in close contact with specialists for years after discharge, for others coming home was the start of putting their baby’s surgery behind them and getting back to normal.
Surgeons may divide the bowel in an operation and bring the two ends out onto the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.
An abdominal wall defect that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered.
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling normally.
An opening created at the front of the neck to allow a tube to be inserted into the windpipe (trachea) to help with breathing.