Parents’ experiences of neonatal surgery

Getting ill & diagnosis of other conditions needing neonatal surgery

In addition to gastroschisis*, exomphalos*, Hirschsprung’s disease* and Necrotising Enterocolitis NEC* (covered in other summaries) there were other conditions that babies developed, meaning they required surgery shortly after birth. Some of these conditions were picked up in antenatal scans, others were only discovered after birth. Parents’ experiences are described here.

Congenital Diaphragmatic Hernia (CDH)

We spoke to three parents who had a baby with a diagnosis of CDH*. Julie was told at a scan when her baby was 20 weeks. She had never heard of the condition and was devastated by the news. It was Easter time so she had to wait until the following week to find out more about the condition and her son’s prognosis.

And when we came away, it was Easter so then we had to go through Easter without any information whatsoever, just completely torn apart. And we came back we went on the internet and tried to look things up but like I say there wasn’t, there wasn’t back then the information what there is now, there wasn’t a CDH you know, charity and all things like that so yeah it was quite hard, we were, you know, really distraught, spent days crying.” Julie

Alix and Antonio had their baby naturally in hospital and had no inkling that there was anything wrong until he was born. He became extremely unwell very suddenly. Their son was covered in meconium and not breathing well. The crash team were called and their son was taken to neonatal intensive care (NICU)*.

Alix and Antonio feared they were about to get more bad news when a pediatrician and several nurses took them to a quiet room. They were told their son had CDH, would need surgery and need to be sent to another hospital. They were stunned. It was very confusing to first-time parents not used to navigating the health system, and there was a lot of information to take in very quickly.

For Alix and Antonio it was confusing and scary to hear such bad news. The doctor was very precise about what would happen next, and went to try and find a hospital they could send their baby to.

View full profile
Antonio: The first, the first well, they say, the first stitches were done, we knew that they needed to be redone but then they took that gap in time, of stability time let’s call it as an advantage to or an opportunity to, to just go and tell us or give us the news. and that was the hardest part because we saw the paediatrician coming in and I was smiling right I thought oh yes, so finally we will have the baby, we will be able to go together and have him with us. But I saw the paediatrician and the nurses, nurse one, nurse two, nurse three and then eventually fifteen people inside the room being the last three.

Alix: I don’t know it was fifteen there was a lot of people.

Antonio: Being the last three [sister], [father in law] and [mother in law] which was our family. So that didn’t look good at all. So we thought this is going to be bad news and we were expecting the worst news. But then he started and he started with a medical language saying your baby was born with a congenital condition and the diagnosis is apart from the meconium that you already know we checked him with the x-rays we took that he has congenital diaphragmatic hernia. It was difficult to assimilate because we didn’t really understand what, what a congenital diaphragmatic hernia was. But then he continued his explanation immediately by describing the condition physically he said this is a hole between your…

Alix:..a hole in his diaphragm.

Antonio: Yes this is a hole in your diaphragm which is the muscle that separates your bowel cavity form your thorax right so that means that because you're not using, he was very descriptive and it was really good I really, really liked what [rustle] did for regarding the diagnosis trying to put that clinical name which I suppose he needs to do into very simple words that we could understand. He said, “The hole it’s in by the muscle but because you're not using your lungs when you’re inside of the womb then all the bowel will try to occupy that space and because the first thing that we do when we are born is to try to inflate our lungs or to put all the air inside our lungs [son] tried to do that. But then he couldn’t because it was the volume was occupied by the bowel. So that’s why he couldn't breathe even by having one lung that, you know, the compensation between the airflows and so on it was difficult so it was also affected by the meconium so that’s why we needed to intubate and try to help him”. So we were shocked right so we, we couldn’t really accept what was going on.

Alix: I think it was just disbelief.

Antonio: Yes and when, the first reaction was probably this is not us, this couldn’t be us because everything was fine so what went wrong and so, so yes we just looked at each other and said well this, this is not happening. And the next thought was then what was going to happen or where is [son] why isn’t he with us having this this discussion? Or is he still here with us at some point I was thinking probably he is not with us anymore. But then he said, “Your baby is stable”. So he started to give now after the diagnosis the current status of the baby, “He’s stable. He needs surgery”, yes and that’s the first time when we heard the word surgery which was quite scary right because again you just think about this fragile small things and think, this is, this is difficult for an adult it will be worse for our, for our baby. So he said, “He needs surgery and he needs surgery as soon as possible. But we don’t have the technical skills or the resources to do to take him to theatre here in [local town]. So we need to find the place, a cot for him somewhere else”. So again very confusing for us, parents for the first time, first time with the NHS as well. So we are, we are healthy people so we haven’t been in hospital before so it was quite disturbing to try to understand. So do we need to get into our car somewhere else or is the hospital going to help with these, is it going to be expensive is it going to be. So it was just disturbance in the whole system and a lot of information to assimilate. But then he said, “I will come back to you in a couple of hours”. He was also very precise about the information in terms of timing and when it was going to happen next and “We’ll come back with you because I need to consult with other teams and where is the place for, for your baby”.
Before he was transferred to the next hospital where there were specialist pediatric surgeons to care for their son, Antonio and Alix met with the consultant. He explained the condition again, gave them more information about the surgery their son would need and his survival chances. They were told CDH only had a 50% survival rate. “That was probably our first time where we actually started to put our feet on the ground and think, this is just starting. This is not going to be those 3 or 5 days in hospital, this is not going to be just surgery and go home. This is going to be a long journey.

Other conditions affecting the bowel

Rebekah had her third daughter by caesarean. Everything seemed fine until she started vomiting brown and then green bile. The 20 week scan had picked up some swollen loops in her intestine (an echogenic bowel), so doctors were immediately alarmed. She was tested for several conditions, including cystic fibrosis, but in the end was given a diagnosis of intestinal (jejunal) atresia*, a blockage in her small intestine that needed surgery.

Everything was perfect with Rebekah’s third daughter until she started vomiting green bile.

View full profile
So to start with perfect, she was my, she was my earliest baby and yet she was, and she weighed the most and it all seemed so perfect and then within about three hours of her being born she I was breastfeeding her and she sort of vomited a sort of slightly discoloured flem and it was sort of a brownish colour and because they’d picked up on her 20 week scan that she had some sort of prominent loops in her intestine they thought there might be something, they thought it probably wasn’t so then we were just gonna see if she did a normal poo when she was born and take it from there they weren’t concerned, overly concerned. So when she did this sort of stained mucus vomit on me I knew straight away that that wasn’t normal and so I got the midwife in and about ten or fifteen minutes later she started vomiting bilious green, horrendously high amount and she didn’t stop, so she got taken away straight away as soon as she stated doing that. But completely stable so that was her, you know, they weren’t they knew it was an emergency but it wasn’t, you know, all the, her heart everything was fine and her temperature everything, she was really quite stable, she was just really sick [laughs].
Emma had her son at 33 weeks and doctors immediately discovered he had not grown well in the womb and not breathing well. She was told he had a join between his windpipe and gullet called a tracheoesophageal fistula (TOF) and a blocked gullet, called an oesophageal atresia (OA)* and would need immediate surgery.

Emma’s baby was born at 33 weeks and she didn’t see him for 6 hours as doctors stabilised him. She was then told he needed immediate surgery.

View full profile
Age at interview: 30
Age at diagnosis: 28
And they were saying he should have been about 4 and a half, 5lbs at 33 weeks and he came out and he was 2lb 12 and he wasn’t, he took a breath but literally they went baby gone, you know, we didn’t see him for six hours and they just said your placenta’s gone, this baby hasn’t grown from about 27/28 weeks but they did say to me that if we’d left it till morning he would have been a stillborn cos he was on the way out. We got taken round to recovery we started making phone calls and obviously a bit shocked, never seen this baby yet, you know, was a quick glance as they whisked him out the door and then they came in with a picture for us, the doctor said there’s a picture of him but we need to talk and I was like oh no what are you saying. So he wasn’t breathing right so they went to put a tube down and the tube curled back up and he said I think he’s got something called Tracheoesophageal fistula with a oesophageal atresia* and he’s gonna need immediate surgery we’re sending him to [hospital] which was the children’s hospital in Scotland. Obviously by then I don’t think I’d even said the word oesophagus I don’t, I didn’t know what it was or, but they did say look he’s very unwell he can’t swallow he’s got all these bubbles he’s not breathing right and my husband said, ‘Well can I follow the ambulance through?’ And they were like ‘No because we don’t know if he’s going to make through the ambulance journey’ which, and then they left us and they didn’t call us for like six hours, we got a quick call before they took him away and then we heard nothing for about six hours because they had to try and get him stable we didn’t know if he’d made the journey and it was awful, was really awful.

* Oesophageal Atresia (OA) with Trachea-Oesophageal Fistula (TOF)
OA is a rare condition where the oesophagus (gullet/foodpipe) is not connected to the stomach and is blocked. This can be associated with TOF, where the oesophagus (gullet/foodpipe) is joined to the trachea (windpipe). 
Adam and Sonya’s daughter developed a hernia* on her ovary when she was three weeks old. She needed surgery to remove it. 

No clear diagnosis

Mary had a placental abruption and had her son arrived early. He seemed fine at first but then doctors grew concerned about his blood sugar levels and vomiting. He was sent to intensive care (NICU), and after a couple of days transferred to the nearest hospital that had a pediatric surgical team. They scanned him and performed exploratory surgery to see if there was a blockage.

Mary didn’t realise how ill her son was. They were concerned about his swollen, tender tummy and so performed an operation.

View full profile
Age at interview: 42
Age at diagnosis: 41
Really it was kind of unclear and I didn’t really know how ill he was either I think I was quite ill as well, I realise I was on a lot of pain relief as well so I didn’t really know what was going on. So and obviously, you know, when they’re that little and at that stage everything, things change kind of, changed quite quickly. So what had happened, so he was born on the Sunday, transferred on the Sunday night, Monday, you know, he was just continuing to be watched in the neo-natal intensive care and they were, you know, my husband was taking my colostrum over to the unit and they were trying to give him my colostrum and he was just continuing to vomit and not really, not really going forward or backwards just kind of, you know, yes just kind of on a plateau really. So they contacted [teaching hospital name] because [teaching hospital name]’s neo-natal surgery centre for North London and they thought it might have been a surgical problem because, you know, the stomach was getting just kind of more swollen and he was vomiting and clearly I guess retrospectively the concern was that you know, you’re worst case and you don’t want to get into a situation where there bowels going to perforate so if there was a problem with the bowel they needed to identify it. So they sent x-rays down to [teaching hospital name] and [teaching hospital name] said bring him down here. So he got transferred in the baby ambulance on the Tuesday with my husband and then so Tuesday afternoon he got transferred down and he was reviewed almost immediately by, by the surgeons down there by obviously I wasn’t there but I heard about it afterwards by Prof [surgeon name]. And he kind of examined him on the Tuesday night and then examined him again on the Wednesday morning and what he said was, to me was on the Wednesday morning the stomach had become more swollen and also more tender kind of as they touched, touched it [son] was becoming more sensitive. So they just decided it was almost exploratory that they’d have to go in and operate on him to just see what was, if there was a physical blockage or you know, what it was. So they decided they were going to operate on him then on the Wednesday and fortunately I got discharged from [hospital name] so I was able to come down and see him before the went in for surgery. So he went in for surgery on the Wednesday afternoon and my husband did all the consents and things like that, I hadn’t really even had the conversations with the surgeon or the neotologist because I wasn’t around which I guess is one of those strange things about when it happens so immediately after the birth.

No we were told that there was no physical blockage we were told that there was a bit of the bowel that looks dodgy that had been removed. And we were told that the, you know, they’d taken biopsies and we were told it could be things like Hirschsprung* so that was a possibility, a possibility at that point in time. And also, and they also did say that they were doing more detailed than normal tests for things like cystic fibrosis as well so, you know, we weren’t able to, we weren’t, nothing was ruled out and we were kind of a couple of things were kind of introduced as potentially what the issue was.

* 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.
Her son was given a stoma* which was reversed by another operation several weeks later. They ran lots of tests but never reached a diagnosis, which is a very unusual scenario. Although Mary would have liked a diagnosis to be clear what the problem had been, in fact they ruled out several very serious conditions so she has learnt to be happy with the diagnosis.

Mary said she doesn’t think they will ever really know what was wrong, but tests for several serious conditions came back negative, so there was room for celebration.

View full profile
Age at interview: 42
Age at diagnosis: 41
[They really didn't know which is fair enough they genuinely didn’t know what it was.] There were a lot of adhesions on the bowels so they believed that he might have had some infection initially after birth which caused the damage to the bowel so that’s their thinking so. I think they, I think that was, that was something I said discussed a lot with the stoma nurse at the time, is I don’t think we’ll ever know what went wrong and I think sometimes, with, and maybe, maybe that's more prevalent with neo-natal, is things are working and just be glad they’re working and we ruled out all, and I think that was something that I think only retrospectively I realised that when the biopsies came back and everything was negative I was like yes so, so what, exactly you still, this still doesn’t give me an answer, what I didn’t realise was that was a cause to celebrate because that would have been a kind of much darker outcome.


But actually the fact that they were all negative so yes maybe something of it in the future one would be able to diagnose but the fact that we’re ruling out so many really difficult illnesses to deal with was really good news and if we don’t know exactly what was wrong then that’s okay. 
Joanne’s daughter was born healthy but at 10 weeks became seriously unwell. She suffered a blood loss to her bowel which meant that it started to develop NEC. Surgeons had to remove the infected sections leaving her with a short bowel.

*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. 

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

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.

Intestinal Atresia (Duodenal, Jejunal, Ileal or Colonic Atresia)
The term atresia refers to the situation when a baby is born with a blockage in the intestines. This may be a narrowing or a complete obstruction. The blockage may be single or multiple. Three areas of the small bowel may be affected: the duodenum, jejunum or the ileum. When the large intestine is blocked, this is known as colonic atresia.

Oesophageal Atresia (OA) with Trachea-Oesophageal Fistula (TOF)
OA is a rare condition where the oesophagus (gullet/foodpipe) is not connected to the stomach and is blocked. This can be associated with TOF, where the oesophagus (gullet/foodpipe) is joined to the trachea (windpipe). 

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.

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 (pooh) passes into a bag attached to the outside of the body.
Previous Page
Next Page