Follow-up and setbacks after neonatal surgery

We talked to parents who were at different stages along their baby’s post-surgical journey. While some were just a few weeks or months after surgery, others were looking back on experiences that had happened several years earlier. Some had relatively straightforward journeys after the surgery, but others had had complex paths involving lots of different specialists due to complications or the need for further operations.

Straightforward recovery

While experiences in hospital might have been long and complex, some parents experienced fairly steady progress and follow-ups with their infant once they were home. Generally, after neonatal surgery there will be a period of follow-up with the surgical team as well as general paediatricians. Alix and Antonio’s baby had been born with congenital diagphragmatic hernia (CDH)* and needed surgery. By the time their son was 12 months old he just needed check-ups every 6 months, with either surgeons or paediatricians, following up the operation and his developmental progress, ‘looking at the scar generally and then just like a normal baby and his development and so on.’

Complex care pathways

Some babies needed a lot of input from a wide range of health professionals even after they had been discharged (such as Nicky’s son who had had necrotising enterocolitis (NEC)*. As the months passed, the picture did become easier for some.

Nicky’s son was born prematurely and developed necrotising enterocolitis (NEC). At 10 months, she was still taking him to at least one appointment a week. She was looking forward to knocking a few of them on the head.

Age at interview 39

Age at diagnosis 39

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Depending on the condition, babies may continue to have very complex needs, even after the surgery. Claire’s son had exomphalos* and other complications. He was 18 months old, and she described a huge number of appointments. ‘We usually have two or three appointments a week for some doctor’s appointments. We see, obviously, his general surgeon, his ENT consultant. We also see neurosurgeons and neurologists and all kinds of people. But we also have physio, his teacher of the deaf, portage, dietician, you know, lots and lots of appointments. So it’s very busy.’ Claire

Joe’s daughter also had an exomphalos and other complications. She has respiratory problems and needs oxygen at home, suffers from reflux, has also needed heart surgery and is on heart medication. When Joe filled in the form for disability benefits there were 21 different consultants on the list. For the first 8 months she couldn’t take her daughter out of the house for fear of infection.

Joe describes the day when the respiratory consultant gave her the green light to take her daughter out and about, but she still needs several appointments a week.

Age at interview 36

Age at diagnosis 34

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Some parents experienced setbacks even after their baby was discharged from hospital. These were sometimes directly related to the surgery, but other times related to side-effects of their baby’s condition or unanticipated problems. These could feel even harder to deal with than the original surgery as parents hadn’t prepared themselves for them. Amy’s daughter had several surgeries for her exomphalos in her first three months, and then had been home for months. But when she had to go back into hospital, when she was a year old, for a minor hernia operation, Amy said ‘I actually found that harder, believe it or not, going back again.I found staying in hospital much more difficult that second time. I couldn’t wait to get out. I felt so much more antsy.’

Several babies developed hernias* which in some cases needed further surgery. Others had side-effects which made daily life worrying and miserable for several months, if not years. Alison and Martin’s son and Barbara’s daughter both had reflux for over a year that caused lot of distress. Their condition improved as they got bigger.

Just as they were getting used to normal family life, Jane’s daughter started to get incredibly ill. It was a massive shock.

Alison’s son had exomphalos and then developed reflux when he was a couple of months old.

Some babies had to have a further surgery after discharge. Ally’s son was born with gastroschisis*. He had an initial operation and then another one when the membrane the surgeon had used to help close his tummy wall started to deteriorate.

Ally’s son went back into hospital for a second operation and had an infection, but by the age of 7 ½ months he was discharged.

Age at interview 37

Age at diagnosis 37

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Accessing hospital after discharge

Accessing hospitals and specialists after their baby had been sent home could sometimes be frustrating. The surgery often happened in a specialist paediatric surgical unit that was not necessarily their local hospital. So when problems came up once they were home, it was hard for parents to know where to take their baby, or find staff who had the expert knowledge they needed. Mary felt that her son was ‘falling between two systems’ as his operation took place in a different hospital to the more local one where they were due to have follow-up appointments. Some specialist hospitals or children’s wards gave parents an open invitation to contact them at any time, and in some cases, parents were able to email their baby’s doctor to ask questions. In Jane’s experience, ‘The hospital have always said, you know, whatever discipline, the door is still open. So they’ve never had any problem at all with me emailing them and saying, ‘Can you just clarify this?’

Alison felt that her hospital had the surgeons for the exomphalos operation, but didn’st really know how to investigate her son’s ongoing problems.

Amy E felt abandoned when she took her daughter home from the specialist centre, and was told to just go to the local hospital if her daughter developed any problems.

Age at interview 32

Age at diagnosis 29

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Open Access

Being given open or emergency access back to the team who had looked after their baby, without having to go through A&E first, was really valued by parents. When Jane’s daughter’s respiratory problems were finally diagnosed she was given emergency access to the hospital’s respiratory wards. ‘Once they knew what the problem was this emergency access thing was brilliant.’

Luke and Angie described a really good open access policy for their son who had Hirschsprung’s disease in their local hospital, which was also a specialist surgical centre.

*Footnote definitions:

Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

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.

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.

A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.

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.

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 (pooing) normally.