Understanding the diagnosis when a baby needs neonatal surgery

It could feel overwhelming when parents were first given the news of their baby’s diagnosis, whether during a routine scan in pregnancy or after birth. Some conditions needing surgery after birth are relatively simple, such as a hernia (e.g. Adam and Sonya’s daughter), but others are rarer, more complex and may have poorer outcomes. Parents were often in shock at the news, as they faced a very uncertain journey, as doctors and surgeons were unable to predict what the outcome would be for their baby.

Claire described being in ‘floods of tears and very upset when the midwife was talking to us in the bad news room’. Amy said she went home ‘not knowing what to think – what does this mean?’

Amy E felt she wasn’st given as much information as she would have liked about her daughter’s gastroschisis*. It was a case of waiting and seeing, if her daughter’s case would be straightforward or complex.

Age at interview 32

Age at diagnosis 29

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Why information was important

Information came from many different sources; doctors, nurses, Internet sites and support groups, academic journals and even TV. Parents often felt powerless, both during pregnancy (if diagnosed before birth) and once their baby had been born. This meant information gathering was a way of feeling they were actively doing something for their baby and family, and a way of counteracting their feelings of isolation and powerlessness.

Amy described herself as a ‘mamma lion’ fighting for her daughter, ‘I mean I had research, research, research’. Claire and her husband went for extra scans and a second opinion after their son’s diagnosis of exomphalos*. ‘We weren’t sure what we were letting ourselves in for. We weren’t sure what the outcome would be for the baby and I think we felt we owed to [son] to just have all the information possible.’ It was also a way of feeling more in control and coping with their anxiety. Parents wanted to know about others experiences, to hear stories of positive outcomes. ‘We were powerless to change anything other than get lots of information.’ Pamela’s son was born prematurely and she was ‘desperate to find, and never did, some sort of account or blog of a story of some baby who’s had every single problem that [son] had and turned out fine I just needed to know about it.’

Information overload

Parents found it hard to take on board all the information at once, and needed time to understand and process what was happening to their baby.

‘The first time when you are having the conversation on day three you don’t even know what to ask, so it’s all a bit like ‘boom’.’ Mary

‘It is one of those things that I think they could explain it perfectly sort of slowly taking their time with you, explain everything and you still wouldn’t – we were a bit sort of, we weren’t really sort of frantic or flapping but we weren’t in a mode to be taking on information at all, were we?’ Adam

Information from health professionals

On the whole, parents felt that information given to them by the hospital (often in the form of a short leaflet or handout) was not broad enough about what can go right and what can go wrong, and couldn’t give them all the information they wanted about outcomes. Often health professionals were not able to give much information because the conditions were so rare and outcomes so different for each child (see ‘Neonatal surgery- parents’ experiences of communication with health professionals‘, ‘Living with uncertainty before and after neonatal surgery‘). So parents went out and looked for more on their own. They were searching for both facts and figures, including long term impact, complications and rates of success from surgery, as well as the lived experiences of other parents or babies. Matt and Donna went home and did their own research into baby’s diagnosis with Hirschsprung’s disease*. ‘There hasn’t been a huge amount of information coming from them’.

Rebekah would have liked more information, and wished she had had a conversation with the surgeon who could have given her some medical terms that she could then go and look up.

Vanessa felt she was given enough information, but not too much. She appreciated that they couldn’st answer all her questions immediately.

Age at interview 31

Age at diagnosis 30

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But being able to talk to health professionals, whether they were the doctors, surgeons or nurses involved in their baby’s care, was really important. ‘I got the information I needed, I was getting the information from the staff on NICU and the surgeons and the doctors, and that was enough for us.’ (Ally) Often conversations and support from specialist nurses were a real help.

Surgeons may draw diagrams for parents, and this can really help parents understand more about their baby’s condition and their surgery.

Mary said she found the conversation with the stoma nurse was really useful in helping her understand her son’s surgery. She felt she needed a basic biology lesson.

Age at interview 42

Age at diagnosis 41

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Nicky said she really appreciated the clear diagrams the surgeon drew for her. It helped her understand, and be able to translate it for her family.

Age at interview 39

Age at diagnosis 39

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Information from the internet

Most parents went online to find out more about their baby’s condition and surgery, although they were often warned not to by doctors, or to only go to trusted or respected sites (such as Victoria who son developed necrotising enterocolitis (NEC)*). Parents described finding helpful information on specialist hospital websites or other condition specific charity websites and also parent forums which were full of information and experience (see ‘Meeting other parents when a baby has had neonatal surgery (online and face to face)‘).

Fiona and Mike said the first thing they did was go online. It took a while to get beyond the facts and figures and find parent experiences too.

Despite warnings, Victoria went online when her son was diagnosed with necrotising enterocolitis (NEC). She found mixing online research with what staff were telling her was helpful.

Age at interview 31

Age at diagnosis 31

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Barbara was wary that what she found online might be frightening because she felt people online are often the ones that might have worse outcomes. She, like others described the dangers of searching on the internet. She felt that parents only post when bad things are happening.

Barbara went online and saw some heartbreaking stories. She decided she would be better off not looking any more, and taking it one step at a time, and see what the doctors had to say.

Age at interview 44

Age at diagnosis 38

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Zoe said she found information was limited, but she was also wary of looking at forums because they don’st paint a true picture.

Age at interview 24

Age at diagnosis 22

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Avoiding the internet

Other parents said they avoided looking at the internet and wanted to just go through their own experience step by step. Rebekah said, ‘I’m normally a big Googler but when she was in hospital I just thought I’m not even gonna Google this stuff, because I’m just gonna deal with it as it happens.’ Amy E didn’t look online as she was wary of what she would find about her daughter’s diagnosis with gastroschisis*. But her mum did, and sent her a link to a YouTube video with a good outcome.

Leanne steered clear of online support groups and forums, as she thought the extreme cases she might see would worry her unnecessarily.

Age at interview 36

Age at diagnosis 36

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Nicky said she was wary of where she looked for information online, and recommended relying on the doctors and nurses looking after your baby for information.

Age at interview 39

Age at diagnosis 39

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*Footnote definitions:

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.

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.

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.

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.