Living with uncertainty before and after neonatal surgery

For parents with a baby who needed surgery, living with uncertainty was something they had had to get used to, at every stage – from the first diagnosis, either in pregnancy or after their baby was born, through the anxious times in hospital, one or more operations and recovery after surgery. At no point were there any guarantees. For parents, the practical and emotional uncertainties were huge.

‘I need to know what is going to happen to my baby.. Is my baby going to survive the operation?’ Alison and Martin
‘It was a waiting game’ Amy
‘We just don’t know what road he is going to take’ Donna and Matt

Rare conditions

On the whole, the conditions that the babies had were rare. There is still more research to be done on the long-term outcomes for babies with conditions like exomphalos, gastroschisis, Hirschsprung’s disease*. So even though babies were transferred to hospitals with specialist pediatric surgeons, there were still uncertainties about their outcomes.

Donna said ‘the surgical team have been brilliant, and I wouldn’t want him under anyone else. I think they have worked wonders with him. But I think the feeling I get from it is that they don’t know themselves, so how can they tell us? I don’t think there’s enough research into this, into Hirschsprung’s*, for them to be able to say’

Claire’s baby was in a specialist children’s hospital. Even there, they didn’st have all the answers about her son’s condition or prognosis.

Age at interview 34

Age at diagnosis 33

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In pregnancy

From the moment parents became aware there was a problem with their baby, the uncertainty began. If scans had picked up a problem such as exomphalos* or gastroschisis*, they were told their baby would need surgery, but doctors and surgeons often couldn’t give more detail than that. While they understood they couldn’t be given guarantees, parents still found this very hard to deal with in pregnancy. Claire felt she had been diverted off the normal pregnancy course. She couldn’t do any practical baby planning, as ‘it just felt too unreal, I think. I wasn’t sure that, you just weren’t sure what was going to happen so I preferred to just wait and see.’

Jane described how hard it was for surgeons to assess before birth what the baby would need, so it was very much wait and see. ‘The thing with exomphalos and I think something that parents find endlessly frustrating during the pregnancy, is that it’s actually really hard for them to assess things before the baby is born. So it’s very much, you know, wait and see, ‘this is what we’ll do in an ideal situation.”

Alison and Martin found the conversation with their surgeon unhelpful. She knew that every case was different, but would have liked more information about what to expect.

Practically planning for a long hospital stay

While they couldn’t know the outcome, parents did know their baby was likely to be in hospital for a few weeks or months, which brought its own uncertainties and practical problems.

As well as her anxieties about how ill her daughter would be when she was born, Joe also had to prepare her older daughters for their new sister being in hospital, and their mummy being away from home for several weeks.

Ally’s son was diagnosed with gastroschisis and she knew he was likely to be in hospital for a few weeks. So she had to plan for her mum to come and stay to look after her toddler. It was a big worry before the birth. After her son was born, surgeons could give no guarantees as to how long he was likely to be in hospital.

Joe described about how hard it was talking to her daughters about needing to be away after the birth, and preparing them for the possibility of their baby sister not making it home.

Age at interview 36

Age at diagnosis 34

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Ally had to try and plan care for her toddler as best she could. She didn’st know how long she and her new baby would need to be in hospital.

Age at interview 37

Age at diagnosis 37

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Zoe found it frustrating that she didn’st know when they would be able to live as a normal family.

Age at interview 24

Age at diagnosis 22

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After Birth

While there are no certainties before the baby is born, there were not many more afterwards. Amy E’s daughter had gastroschisis and while it was clear she was going to be in hospital for a long time, everything else was uncertain. She found the conversation with her surgeon incredibly helpful. He was very matter of fact about the worst and the best-case scenarios.

Mary was in shock when her son arrived early and was sent for surgery. She remembers the specialist stoma* nurse giving her some reassurance during those early topsy-turvy days.

Amy E’s matter of fact conversation with the surgeon was just what she needed.

Age at interview 32

Age at diagnosis 29

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Mary found the conversation with the nurse very helpful in coming to terms with what a weird situation they found themselves in suddenly.

Age at interview 42

Age at diagnosis 41

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Amy said the uncertainty really got to her. Her partner helped. ‘So it was always a waiting game and tricky because you want to know the answer, ‘When is my baby going to come home?’ And I guess that’s why it was really helpful that my partner was saying, ‘It doesn’t matter, you know. It’s just that she’ll get home.’ And I lost sight of that a few times and I needed to be, you know, that was really important for me to hear.’ Victoria’s son was born very prematurely, and developed necrotising enterocolitis (NEC)*. She described the uncertainty as ‘hell’; sitting next to his cot day in, day out, not knowing if he was going to pull through. She knew that doctors couldn’t give her false hope, but she was desperate for someone to reassure her he would be fine.

Victoria was constantly looking for someone who could say, yes your daughter will be fine, but realised the doctors couldn’st reassure her, they didn’st know.

Age at interview 31

Age at diagnosis 31

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Uncertain surgical outcomes

Parents also had to cope with the outcome of their baby’s surgery being uncertain. They appreciated that surgeons had a difficult job managing the expectations of parents whose babies had such rare conditions. Joe said, ‘The surgeon has a very difficult job preparing you as a parent because ‘you are going to have surgery done on your baby, but I don’t know what I’m giving you back’.’ He couldn’t say whether her daughter would have a full muscle and skin closure of her exomphalos or whether she would be struggling after the operation and need to be on oxygen support.

Sally-Anne and Simon knew that the operation was risky, and that their son might not survive.

Emotionally preparing

Parents found preparing themselves emotionally was very hard in the face of so much uncertainty. They understood that doctors couldn’t give them any guarantees, and some parents found it helpful to face up to the worst case scenario, that they might lose their baby.

Amy said that was her way of coping. ‘I had to look at the worst case scenario, like when she was in me and I still was, ‘She might die.’ .Some people might be different, they might just think, ‘My child is going to live. I’m going to stay positive and optimistic and this is how I have to cope.’ For me I had to always think that she might still die, and it was horrible to hold that beside you. But for me, it would be the only way I could cope if she did. I had to be realistic, I guess.’

Jane looked into funeral arrangements for her daughter, as it helped her feel more in control. She had been told her daughter had a 50% chance of dying at birth.

‘I mean I know it sounds horrible, I actually looked into funerals and things like that, which sounds awful. But that just made me feel more in control because I couldn’t stand the thought of her just – I don’t know. Yeah, that whole thing just preyed on my mind an awful lot and I thought I had to think about that because it was a possibility. So rather than blanking it out I thought, you know, I did look into it and stuff and kind of put together a little plan just in case.’

Joanne’s daughter became critically ill when she was 10 weeks old. In the early hours doctors were unsure she would survive, and so Joanne and her husband had thought about funerals and called their parents to come and say goodbye to her. She pulled through, and is now 7 years old and attending junior school. But Joanna reflects back on that time of uncertainty.

Joanne was not clear what the future held for her baby. She has many times prepared herself for losing her daughter; looked over the cliff but stepped back from the edge.

Age at interview 41

Age at diagnosis 34

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*Footnote definitions:

*Exomphalos, gastroschisis and Hirschsprung’s disease are all congenital disorders of the bowel. More information can be found in our ‘Resources’ section about research at National Perinatal Epidemiology Unit (NPEU).

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.

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 by the umbilical cord.

An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. A hole is present next to the umbilical cord through which the baby’s intestines protrude into fluid around the baby while in the womb, and outside the baby’s tummy after birth.

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.

Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.