Parents’ experiences of neonatal surgery

Travel to hospital & staying over when a baby needs neonatal surgery

Parents understandably did not want to leave their baby’s side for longer than absolutely necessary when they were in hospital. It was both emotionally and practically important to them.

Amy E said that leaving her daughter on the first evening was like abandoning her, “It still felt like there was an elastic band being stretched and I couldn’t wait to get back”. Amy said, “It’s so vital. I mean we got to be right there. I was, you know, at the bedside from morning to night. I was able to be there and it was so important.” Being away from their baby for even a few minutes meant they worried they might miss an important change in their baby, or a visit from the surgeon or doctor.
But being able to stay close to their baby was not always easy. Not all hospitals can carry out surgery on babies with complex surgical needs as it is a very specialised task. The surgical staff and facilities needed are only available in regional specialist centres and these tend to be in major cities. Unless parents were lucky enough to live near one of the major centres, there was a lot of travel involved in being with their baby (see also ‘Impact on the family and friends as a child grows up after neonatal surgery’ and ‘Finances and working life when a baby has neonatal surgery’). Michelle and Harry were aware they were incredibly lucky to live close to a surgical centre. It was a few minutes’ travel from their home in London. There were families with a baby in neonatal intensive care (NICU)* who had travelled from as far away as Wales to be with their baby. Zoe lives in Scotland and her closest surgical centre was three hours’ drive from her home. 

Some parents travelled every day to be with their baby, others were offered accommodation in or near the hospital (see below). 

Travelling to visit baby
Daily visits to their baby were exhausting and took their toll on parents. They were especially hard for mothers who were recovering from caesarean operations and trying to express milk for their baby. Some parents didn’t have any choice but to travel. As they lived in the city where her daughter was being cared for, Barbara was not eligible for any hospital accommodation.
Others, like Pamela, felt it was “easier to come home” to be with her other children. Rebekah’s third daughter was in hospital in her nearest large city which was over an hour’s drive away. She would look after her two toddlers during the day and then she and her husband would drive up in the evening to visit their baby.
Several parents also mentioned the sheer logistics of finding a parking space at the hospital, quite apart from the costs of parking and petrol.

Staying with baby – by their bed

Some babies were only in hospital for a short while, so parents muddled through as best they could. Adam and Sonya’s daughter was in hospital for 3 days. While Adam wasn’t allowed to stay over, Sonya camped on the sofa near her daughter’s cot. It was uncomfortable and exhausting but they managed as it was only for a few nights. They felt it was a bit uninformed and unnecessary that Adam was not allowed to stay. “It was annoying I couldn’t stay as well”.

Other parents had a much longer haul. Depending on how ill they were at various stages, some parents were allowed to sleep with their baby in camp bed or private room. Jane was in and out of hospital with her daughter over time. The occasions when she had to sleep in a put-up bed next to her were “hell”. Noise and disturbance on the ward was a common theme for parents trying to sleep near the baby.

“I mean I’ve done it a few times when we’ve been put on wards or when she’s had an emergency and it’s just, it sucks your soul out and you never get a good night’s sleep.” Jane
Staying with baby – in hospital accommodation

Several parents were offered a room in accommodation (a basic room, hostel or hotel) especially for parents of sick babies, run by the hospital or charities like SSNAP (Support for the sick newborn and their parents) or Ronald Macdonald. The accommodation was often free, which made a huge difference as the costs of driving and parking mounted up for many parents. Parents described it as a lifeline or blessing and often stayed there for several weeks.

Amy said the hospital “hotel” was so important. It allowed her to stay close, and also have a little bit of normality. She was there for 5 weeks. “I got to stay in the hospital hotel, means the world. I mean honestly, it was, it’s so vital. I mean we got to be right there. I was, you know, at the bedside from morning to night. I was able to be there and it was so important. I was so grateful that they have that facility.” Parents really valued the possibility of having a normal bedtime routine with their baby, normal conversations with each other, other parents and ‘hotel’ staff, and being able to cook their own (basic) meals. Zoe valued being able to look after herself and get away from the ward, as well as being able to be close to her daughter. But there were waiting lists and some bizarre rules which added to parent’s worries at times.
Amy E lived two hours drive away from the hospital, and she said she couldn’t have survived without Ronald Macdonald house, which was a stone’s throw away from her baby. It “really saved me”.
Staying with baby – juggling other children and work

Juggling the care of older siblings was often very difficult for parents when their baby was in hospital. It was a period of time that often separated families, with one parent juggling children at home and the other spending long days in hospital with their baby. Fiona found this made her feel guilty, “Because you feel so guilty the whole time.”

When the older siblings were in school or nursery there was no way around this. But sometimes the hospital accommodation allowed their older siblings to stay too. Parents really appreciated this, especially parents who discovered their child had Hirschsprung’s disease* after birth and didn’t have time to prepare for long hospital stays. Parents also appreciated when the hospital was supportive of siblings visiting.
* Footnote definitions:

Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.

Hirschsprung’s Disease
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.

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