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Parents’ experiences of neonatal surgery

What is neonatal surgery?

A surgeon’s introduction to Parent’s experiences of neonatal surgery

Being told that your baby will need surgery can be a frightening and worrying experience for parents. We spoke to a paediatric surgeon, Anna-May Long, to find out more about the range of conditions that could mean a baby might need surgery, how those conditions might be diagnosed and what parents might expect in hospital. We haven’t covered heart defects in this website, as we hope to cover it in another website at some point.
 

Anna explains that this website is about parent’s experiences of having a baby who needs surgery. These conditions are rare, and we felt it was important to hear parents’ experiences.

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So this is a module which is all about the experiences of parents who have a baby that’s diagnosed with a problem that needs to have surgical treatment. In the most, majority of cases that will be an early operation that happens early in life but in some cases it might be surgical management where the baby then needs a planned operation at some point in the future. so parents have been asked about their experiences in depth from the point of being diagnosed often that’s before the baby’s even born to their journey through having the operation or the surgical management to sometimes quite a long way in the future looking back on how the baby’s been after the baby’s been home or has grown up in some cases.

Well babies that need surgery early in life have conditions that are extremely rare and we know from some other work that we’ve done that an individual surgeon in an individual centre comes across these type of conditions only very occasionally in their working life. And so far there’s been very little written and talked about what the actual experiences are for a parent of going through that process. So we felt it was really important to look in real depth at what that feels like for them and the impact it has on them and their wider lives.
The conditions that require surgery early in life represent a real spectrum from those that are relatively minor to some more major, complex conditions. Some conditions are detected during pregnancy, by routine scans, others are not obvious until after the baby has been born, or develop in the early weeks. Here Anna explains the main conditions.
 

Anna explains two conditions that can be picked up on a routine scan in pregnancy, exomphalos and gastroschisis.

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So conditions that can be found out about on a routine scan include a number of conditions that happen when the human body is forming inside the womb and parts of the human body don’t develop in the normal way. So for example when the baby’s tummy is developing in the womb the bowel for some time during the time when the woman is pregnant actually escapes form the baby’s tummy and goes into the umbilical cord, that’s a normal process but there are a couple of conditions where that process doesn’t happen as it should and the bowel remains on the outside of the body and the tummy wall doesn’t form properly. So there’s a condition known as exomphalos where the muscles of the tummy wall don’t come together and the tummy button doesn’t close properly and the bowel and sometimes other structures end up sitting on the outside of the baby’s body in the umbilical cord itself. This can be very minor from a very small defect with just a small amount of bowel to a very large defect with very few muscles on the tummy wall where the liver and the bowel are outside of the baby’s body. 

A similar but very different in many ways condition is known as gastroschisis where next to the umbilical cord there is actually a hole in the wall of the tummy and through that hole the bowel floats freely in the amniotic fluid and as a result it’s in contact with the baby’s urine and sometimes the baby’s faeces and that bowel can sometimes be quite inflamed as a result. Also the bowel can undergo processes like twisting and a blockage while it’s outside of the baby’s body. But in the majority of cases it’s a normal bowel it’s just sitting in the amniotic fluid and floating outside to the baby’s body.
 

Another condition that is often picked up in the womb is congenital diagphragmatic hernia, or CDH.

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Another condition which is picked up in the womb is in about two thirds of cases is known as congenital diaphragmatic hernia or CDH and in that condition the diaphragm which is the muscle that separates the structures inside the chest from the structures inside the tummy has a hole in it and this might again be a small hole or it might be a very large hole and when it’s a very large hole the majority of the babies intestines end up in the chest cavity and sometimes the liver as well. as part of this condition the lung doesn’t develop correctly either so the lung on the side where there’s a hole in the diaphragm, it can sometimes be both sides but more often it’s just on the one side, the lung doesn’t develop correctly and the lung is very, very small with abnormal blood vessels within it and this can affect the baby’s circulation after birth and it can affect the baby’s ability to sort of carry oxygen around the body and many baby’s that are detected before birth are very poorly when they are born because of their difficulties with the both the heart system and also the breathing system. 
 

Hirschsprung’s disease is one of the conditions that are often only picked up after the baby has been born, when they start to feed and develop.

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And then there are some conditions that are only picked up after the baby’s born that may not necessarily be identified in the womb an example of that condition is known as Hirschsprungs disease and this is a condition where the nerve cells in the baby’s bowel don’t develop properly. When the baby’s growing inside the womb the nerve cells grow down the intestines and in Hirschsprungs disease for some reason, we don’t know why, the nerve cells grow down from the mouth towards the bottom and at some point they stop so the end part of the bowel has no nerve cells in it and when the end part of the bowel doesn’t have those special nerve cells in it it can’t relax, all of our bowels need the nerves within them to help them relax and to push the contents through. When the bowel can’t relax it becomes like a very, very narrow tube and through that narrow tube it’s very difficult for the baby to pass both air that the baby may swallow and also the contents, the faeces and things that are within the baby’s bowel before the baby’s born and so it presents like a blockage to the bowel. So often in the first day or two of life the baby may have a very swollen tummy and may vomit and not be able to pass any stool and it’s not necessarily something which might have been picked up before birth but it’s something which may become obvious. There are different types of Hirschsprungs disease and some present later on in the baby’s life but that’s the usual way which this type of baby’s can present. 
There is another range of conditions that can affect the baby after birth, and can present quite suddenly. These include a condition that affects premature babies in particular, necrotising enterocolitis or NEC, which is an inflammation and infection of the gut. Another is a condition called atresia which is a blockage somewhere in the bowels. Finally hernias in the groin, which can usually develop after birth and generally require only a minor operation to correct.
 

Anna explains a condition called necrotising enterocolitis (NEC), which can develop after a baby has been born.

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Then there are conditions which affect the baby slightly after the birth, so they come about as a problem and sort of can present quite suddenly in the baby’s life. An example of this is a condition which affects premature babies in particular which is called necrotising enterocolitis which we shorten to be called NEC or NEC. This is a condition where the baby develops a very severe inflammation and infection in the bowel and the bowel can and this can affect the blood supply to the bowel so parts of the bowel can actually die as a result and this is as you can imagine makes the baby very, very unwell indeed. So this would present as for example a premature baby that’s being fed which suddenly develops a very swollen sort of red angry looking tummy and the baby’s condition deteriorates, they need more oxygen they need more support with their breathing and their blood pressure and some strong antibiotics and should the bowel suffer an effect which stops the blood supply to it then parts of that bowel may die and that is when baby’s need to have an operation. 
 

Anna explains a condition called atresia, a blockage in the bowel.

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Another condition which develops in the womb which can sometimes present both before birth or afterwards is where babies develop a blockage in the bowel. these are thought to develop through a problem with blood supply to the bowel which just happens as a sort of almost random event before birth and when the blood supply to the bowel is affected in the womb again we don’t know why that leads to a segment of the bowel or multiple segments of the bowel to sort of shrink away and disappear, this can present as a blockage which is known as atresia. So atresia is a blockage anywhere in the bowel and in the small intestine which is the commonest type of atresia its thought to be related to a problem with the blood supply to the bowel which presents as a blockage which one might get a hint about on a scan before birth if the loops of intestine inside the baby’s tummy are very swollen and big or might present in a similar way to 
Hirschsprungs with a very big swollen tummy after birth and the baby not being able to tolerate any feed and vomiting,
 

Anna explains what a hernia in the groin is, and why it is important to operate on them.

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Yes so hernia is a condition which babies are born with the potential to develop and then develops at some point usually after birth. So there’s when the baby’s developing in the womb the testicles start off in male infants up inside the tummy and they drop down through the course of development in the womb usually just before birth they drop down into the scrotum and they take with them into the scrotum a small little protrusion a small little sac of the lining of the tummy which connects the abdominal cavity to the scrotum. This little protrusion also happens in girls even when the testicles aren’t dropping down that little protrusion happens and then what usually happens around the time of birth is that little tube closes off and becomes a little fibrous band. If that doesn’t happen it stays as an open tube which can either let fluid into it or if it’s big enough to can let a loop of the baby’s intestine or one of the other structures from inside the tummy into it and often that bowel will come and go without any problems but we, we worry about it because rarely the bowel can go inside that little tube and become swollen with fluid for example and then it becomes more swollen because it’s not able to get out and it can affect the blood supply to the bowel and can block the bowel and that piece of intestine with its poor blood supply can unfortunately in some cases be lost. so babies with hernias that present early in life in the groin it’s what we call in inguinal hernia we always recommend an operation to close off that little tube and to prevent that from happening and that is a relatively minor operation which is done through a very small cut in the lower part of the tummy, most of the time and occasionally by keyhole surgery inside the tummy.
Some conditions are detectable during pregnancy scans, and parents will be told by clinicians their baby has a condition that will need surgery after birth. Parents will meet with a range of health professionals to discuss the diagnosis, and plan the birth.
 

Some conditions can be diagnosed during pregnancy. Here Anna describes how an antenatal diagnosis is made.

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So throughout pregnancy a woman goes for a number of scans, or is always recommended to go for a number of scans. there’s the early scan which is known as the dating scan which happens about 10-12 weeks and at that early scan it’s very unusual to pick up problems with the structure of the baby and the way the baby is developing in the womb but some abnormalities that surgeons treat after birth can present even earlier at that type of scan, exomphalos being one. the next scan a woman has is at about 20 weeks of gestation and this is known as an anomaly scan and it’s this scan where the person who does the scan is looking for particular abnormalities that might have developed in that baby and for example diaphragmatic hernia, gastroschisis, exomphalos would be detectable in the majority of cases in that type of scan. there are also some abnormalities that can be detected on the early blood tests or the early blood tests can increase the suspicion of having an abnormality but most of the abnormalities that require surgery that are detected before birth are picked up on that 20 week anomaly scan.

So the first thing that will happen after the person who’s done the scan suspects an abnormality is they will usually get a second opinion and usually from a specialist within every unit who will have a look at that scan and confirm that that’s what is suspected. then it depends on the unit where the baby is first diagnosed, if it’s a specialist fetal medicine unit then that baby’s management will continue in that hospital but if it’s in a smaller unit but it’s not a specialist centre which is in the majority of cases they will then be referred into a specialist unit and they will see a fetal medicine consultant who will then discuss what happens next. What happens next will involve usually more scans to check on the abnormality and to see if it’s possible to get a sense of its severity. In some cases they may recommend other tests for example amniocentesis or chorionic villus sampling to look for another associated abnormalities. Then a serial scans will be done and planned and this discussion will be had with the fetal medicine consultant about the choices that the woman has at that point. And often other people will be involved in that discussion such as a specialist midwife and a paediatric surgeon who can advise about what is likely to happen to the baby after birth. at that point some parent’s will decide depending on the severity of the abnormality particularly if there are other associated problems not to continue with the pregnancy in which case the fetal medicine unit will guide them through those choices. and the if they decide to continue with the pregnancy the fetal medicine unit will keep a close eye on the baby with serial scans in some of the conditions it’s unfortunate the case that the baby’s don’t survive through pregnancy and end up with a baby born at the end of the pregnancy and so they’ll be monitoring very carefully for the condition of the baby. 
 

Parents will discuss with health professionals plans for where, how and when the baby will be delivered.

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Throughout that process they will make a plan for where and how and when the baby is delivered this will involve whether or not it’s a vaginal delivery, a normal delivery or a caesarean section which in some cases might be the preferred option whether or not it happens in the specialist centre or whether or not it happens in the home centre, more often than not in most abnormalities that are detected in the womb it will be the specialist centre. And the timing of delivery which in the majority of cases will be as close to term as possible but in some situations through the process of monitoring it may be necessary to deliver the baby early if they have a particular concern. It’s worth mentioning that as I said not all babies survive to term because either the parents decide and make a choice not to continue with the pregnancy or the baby doesn’t survive until term. In this particular module all of the parents decided to continue with the pregnancy and the babies were born alive because of our focus particularly on the experience of surgical management.
Some conditions aren’t detectable until after the baby has been born, or develop after birth.
 

Anna describes how a diagnosis might be made after the baby has been born.

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So the condition would either be obvious when the baby’s born for example an exomphalos defect that hadn’t been picked up in the womb this would be a small defect in the abdominal wall of the baby where the bowel’s protruding into the intestine. Or things like if the baby’s not able to swallow because there’s a blockage in the oesophagus that presents pretty early with the baby drooling saliva or an abnormality such as where the baby’s bottom is incorrectly positioned or the bottom isn’t visible at all those sort of things are picked up pretty soon after birth. Other’s might take a day or two to manifest and develop and things that would present sort of within hours in a day or two might be things like a blockage to the bowel known as atresia or a blockage to the bowel caused by a problem with the nerve cells known as Hirschsprungs, those would develop gradually with the baby’s tummy becoming more swollen and the baby vomiting and not being able to tolerate feeds. And then at that point that baby would have an assessment by a paediatrician or a surgeon to say that they think there is a problem here that needs an operation and then they would be transferred to the appropriate place. and then there’s the final type of conditions which are called acquired which the baby’s not born with but develop as a result of a problem in the first few weeks of life and usually for example in necrotising enterocolitis that baby’s undergoing care for monitoring in the neo-natal unit and it will be picked up as a deterioration in the baby’s condition and how the abdomen looks, how the baby’s tummy looks and then again specialist assessments would be undertaken and more tests and investigations to confirm that that is what had happened.
Babies who have complications that mean they need surgery will be cared for by specialist staff. Often babies need to be transferred to a specialist hospital after birth. There will be a number of teams involved.
 

Babies needing surgery are often transferred to a specialist centre and a number of teams will be involved in their care over time.

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So what would happen to a baby after it’s born, does he or she stay in the same hospital as the mum? 

That depends upon the local set up and there are a variety of different set ups that exist as I mentioned when the baby is delivered there’ll be a choice about whether or not the baby’s born in a specialist centre or whether or not they’re born in their home hospital and if they’re born in their home hospital and they need an operation, the baby will then need to be transferred to the specialist surgical centre. Some specialist centres are just women's centres and often will have neo-natal facilities on site and some will be a large hospital that incorporates a children’s hospital as well. So depending on the local set up the baby will either be assessed by the surgeons on that site and treated by the surgeons on that site or in some cases if the children’s hospital where the surgeons and anaesthetist and the post-operative care is undertaken the baby may need to be transferred to a different hospital in a separate geographical site and depending on the mother’s delivery and how the mother is after the delivery they may need to stay in the separate women’s hospital after the birth.

So before birth there will be a number of teams involved, there will be the woman’s own home midwife and her own GP there’ll be the local team if she’s been initially picked up at a local hospital there’ll be her own obstetric team who are the team that deal with her having the baby and local midwives. And then there’ll be the, potentially a team in a specialist centre and that will usually comprise fetal medicine professionals who are obstetricians who have a speciality of dealing with problems that are picked up before birth and problems that happen during pregnancy that might affect the baby. And so they will be sort of looking at scans and making plans with the woman about, and the parents about their choices and sort of overseeing the family’s care. But within those centres there are often specialist midwives who might help counsel the woman and provide her with more information and the family with more information. then again the teams who deal with the baby after birth might be met before birth and they would include the paediatric surgeons who are the surgical team who oversee the baby’s surgical management once the baby’s born, make plans for what treatments are given and talk to the parents both before and after birth about the likely cause and progress of that baby. the baby, if the baby needs to go to a special care unit or a neo-natal unit after birth there will be a team of neonatologists who are special children’s doctors paediatric doctors who deal particularly with problems of new born babies and manage new born babies that need extra support. So the neonatologists often oversee sort of the general management of the baby, the medical management of the baby and the support of the baby if the baby’s unwell. there are often neo-natal nurses who will look after the baby day to day and paediatric specialist nurses but there are often neo-natal and paediatrics specialist nurses who have a special interest in baby’s, conditions that affect a baby that needs surgery after birth and they again have a sort of counselling role and a sort of point of continuity of providing support and information to the family about what’s happening. then the baby moves to a children’s ward and sort of in the future there might be a more general sort of paediatric team who will be involved in looking after the baby’s sort of general care, medical care going forward and they might be in the local hospital or in the specialist centre. They might be what’s called a general paediatrician will look at all issues like growth development, feeding or there might be have a special role for example looking after the chest or the baby’s heart after birth.
 

There is a very wide spectrum of procedures and operations that babies with these conditions might need. Anna gives us a general picture of what happens to the baby before and after surgery.

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There’s a sort of spectrum of procedures and surgical managements that the baby might undergo. but the general things would be to make sure that baby is stable and well before the operation that’s the same for all procedures accept for those which are carried out as an emergency so there are some procedures have to be carried out very, very quickly in which case the baby will be prepared to be as stable and as well as they can be but actually the operation and the care around it is going to be what makes them better. But where procedures are planned the baby, as I said will be stabilised and often the baby will, if the baby’s feeding the baby will need to have a period without having any milk. when the baby goes, is planning to go for the operation the parents will usually have the opportunity to talk to the anaesthetist and the anaesthetists are the doctors who look after the baby during and after the operation they make sure that the baby is well during the operation they make sure the baby is completely pain free and is comfortable and that the surgery can be performed in the best condition possible. so the anaesthetist will talk to the parents about what will happen afterwards whether or not the baby’s likely to stay on the breathing machine or whether or not the baby wakes up because many of the conditions where the baby’s very poorly before or has a major problem the baby will stay on the breathing machine afterwards and then they will monitor and stabilise the baby during the operation. The operations are done in the vast majority of cases in an operating theatre separate from where the baby’s cared for it’s usually the case in most hospitals that the parents will be able to go up to the operating theatres with the baby but will then hand the baby over before the baby is put to sleep for the operation or sometimes if they’re asleep anyway the baby will be taken into the operating theatre. Then once the operation is done the surgeon will usually update the parents as soon as possible to let them know how things have gone but the baby might need a period of stabilisation either in the operating theatre or in the recovery before the baby’s then transferred back to the place where they’re going to be cared for after the operation. at that time the things that will be the priority are really to make sure the baby is completely pain free and comfortable and stable and the anaesthetist will be handing over to the team who will be looking after the baby to make sure that any potential problems have been anticipated and dealt with. And then from there on in the baby will be undergoing the process of recovery from the surgery.
It is not always clear what the progress of the baby will be after their operation. The conditions vary, and while sometimes surgeons will have a good idea about the operation they plan to do, in other situations they will only know exactly what they have to do once they have started operating. There is unfortunately uncertainty at every stage for parents.
 

Anna explains that having a baby that needs surgical treatment can be a time of great uncertainty for parents.

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So surgeons will often have a good idea before the operation about the type of operation which they plan to do, sometimes they don’t, sometimes they will only be able to know exactly because the baby’s anatomy or because of challenges that they encounter during the surgery about exactly what operation is going to be done or what management is going to be undertaken. After the operation the surgeon often has a much better idea about the way the baby’s progress and likely course but they can’t always anticipate all of the potential problems or challenges that the baby might face after the operation. So although they may be able to give the parents a sort of rough idea about how things will go they can never quite give them an exact idea about for example how long the baby will be in hospital and this is sometimes very difficult for parents to deal with because there’s uncertainty at every stage even before birth or afterwards when sort of faced with a baby that needs surgical treatment and then even after the treatment there is unfortunately more uncertainty.
In the rest of this resource you can hear parents’ voices, sharing their experiences of the neonatal surgery journey they have travelled with their babies. We hope you find it helpful and answers some of the questions you might have.
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