Parents’ experiences of neonatal surgery
Before finding out the baby has problem - going for antenatal scans
Discovering during the scan there might be a problem
New parents often look forward to early scans to find out more about their baby. But the early dating scan (normally done around 12 weeks) was sometimes when sonographers (the staff who do ultrasound scans) first picked up a problem that might need surgery, such as exomphalos or gastroschisis*. Most congenital anomalies that are detectable before birth are found at the 20 week scan, otherwise known as the anomaly scan. For the parents we spoke to, the scan where something was found to be wrong was often the single moment that most sticks in their minds, as the first point they had any idea there was something wrong with their baby. This scan day therefore marked the start of a long, uncertain and anxious journey.
Alison was interviewed 25 years after the scan that picked up her son’s exomphalos, and it is still one of the moments that stands out for her.
Her son is now grown up, but Alison still remembers clearly the moment when she was told there was a problem and he would need surgery.
Her son is now grown up, but Alison still remembers clearly the moment when she was told there was a problem and he would need surgery.
Probably the scan, the deep scan when he was doing the scan and he said ‘Yes there is an issue here’ and I remember saying to him ‘No, no, no there’s not you just couldn’t see, they just couldn’t see’. Because you know, I had no idea that there was a problem I said, ‘They just couldn’t see the scan properly’. You know he was very softly spoken Scottish and he just tapped my shoulder and he said, ‘No. No there's a problem with your baby’ and that for me is probably the stand out memory and thinking oh, you know, everything’s sort of, Martin’s standing at the end because he couldn’t hear, Martin’s at the end holding onto [daughter] with his arm in a sling and he said he just saw me go white, you know, so he didn’t know what was going on at that stage. So that all is very, very clear in my head actually I can still see that scene really clearly, so.Harry and Michelle describe how the sonographer paused and told them she was about to “burst their bubble”.
Harry and Michelle describe how the sonographer paused and told them she was about to “burst their bubble”.
Harry: All the main measurements were fine.
Michelle: It was very...
Harry: But she said those words that you kind of feel the blood drain from your body which is, cos we were joking round with her saying so, you know, just joking around.
Michelle: She was lovely. And she held my hand and it all went quiet.
Harry: Yes she said, ‘I’ve got to burst your bubble’ and you think ‘Shit now what’s gonna happen what’s she about to tell us.’ And then she just told us what the situation was and I kind of understood what she was saying, but at that point you don’t really know what it means really well is this a serious thing is it a routine thing how common is it, all those kind of things immediately.
Michelle: And you could see it very clearly on the scan actually you could see his bowel outside of his body and you could, you know, I’m not saying I would have picked up on it had there not been a stenographer so I don’t really know what I’m looking at, it’s all just a blob. But actually when she pointed it out it was really obvious so his [bowel] was out kind of from, from the get go. And obviously we had, I’d never heard of the condition before I had never experienced anyone who had had it, who had talked about it despite having had two children before and subsequently knowing quite a lot of people who had had children. Just never come across it at all.
Harry: No.
Michelle: And then the rest of the scan was fairly normal it was kind of you know, went through the final bits of it went off to do blood tests and all the usual bits and pieces but we had to come back the next day to see someone in the high risk team then to kind of re-scan and to talk through what the implications were of what they’d found on that day. So we obviously had a fairly torrid night [Laugh]. Barbara describes how her husband was so shocked he fainted when the sonographer left the room to find a colleague.
Barbara describes how her husband was so shocked he fainted when the sonographer left the room to find a colleague.
Amy was shocked to be told her baby’s bowels were outside its body. She had no idea what it meant.
Amy was shocked to be told her baby’s bowels were outside its body. She had no idea what it meant.
So I went home in floods of tears, not knowing what to think, what does this mean? And I went home and I Googled, as everyone would these days, and I put it into Google and out came all of this medical information, which was very, very negative. So it was really dreary and difficult to read through all of this and there was research studies, very, very few that I could find. But everything I could find was very negative. A very, you know, there is this much chance your baby will have other issues and it, it was pretty grim reading. However, there was one thing I found and it was a group that somebody in Britain had set up about babies that have this issue and on that page I did see babies that didn’t make it, I saw babies that had other issues and I saw babies who only had that issue.
And I went in the next day thinking, no matter what, I have to give this baby a chance. There’s, whatever percentage of that was, I felt, before I went back to meet that consultant, that I wanted to give this baby a chance. The consultant was very negative [laughs]. I don’t know how else to put that, was very, very negative. We called him ‘Doctor Death’ in the end because each time we went it was just doom and gloom and it was very, very difficult. Even when I said I’ve made this choice, we’d made this choice, we’d thought about it, it was still the suggestion was there to terminate and it was brought up more than once to us. And I found, I found that really, really challenging because I’d made my decision and I’d given my decision to them and still felt like I wasn’t always supported by that.
Confirming a diagnosis
Sometimes sonographers could give a diagnosis immediately, in other cases parents needed to come back for further tests. In all cases they were referred to a fetal medicine specialist. Some were able to see a specialist the same or following day, but others had to wait longer. Often more scans and tests were needed to confirm the diagnosis and rule out other problems, such as Edwards’ syndrome. Waiting for that next appointment was often an agonising few days; as Joe said: “for three days we were panic stricken”. During this period, parents sometimes discussed what they might do if they were told the baby had a particular condition, but some didn’t want to think ahead until they knew more.
The midwife called Jane late the night before her follow-up scan, so she didn’t have a long wait. She discovered her daughter had an exomphalos and possible links to Edwards’ syndrome.
The midwife called Jane late the night before her follow-up scan, so she didn’t have a long wait. She discovered her daughter had an exomphalos and possible links to Edwards’ syndrome.
This all sounds really mad but this is how I felt. And then we got a call from, just before Christmas 2004, we got a call from the midwife who, we got a call from the midwife and she basically said “There’s a possibility that the baby might have spina bifida. You need to go to the hospital, the big teaching hospital near us first thing tomorrow morning and you see fetal medicine” which was fantastic because, you know, got to see people, you know, got to see somebody really quickly. And I think she specifically rang me up late because I seem to remember getting a call at maybe seven, eight o’clock at night and it was a blessing because I only had twelve hours to think and we had the first appointment at the hospital the next day. So like I know of people who’ve waited, you know, a fortnight more for that and it’s such a difficult time to be going through.
So we went to fetal medicine the next day and, basically were told, having spent, you know, hours Googling ‘spina bifida’, [laughs] and basically were told very quickly, because it was so obvious when they’d scanned me, that the baby had a really big exomphalos*. And we’d never heard of it, so that was a big shock. But probably the most, on that day, the most worrying thing was that we were told about the major genetical, genetical, that’s not a word, the major link-, chromosomal link between exomphalos and Edward’s syndrome*. So, as I understand it, about thirty per cent of fetuses have Edward’s syndrome. And, you know, the consultant explained how, you know, what a devastating diagnosis that is, basically.
* Exomphalos
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.
*Edwards’ Syndrome
A serious genetic condition, caused by too many chromosomes, also known as Trisomy 18.Claire had a series of scans, which gradually ruled out other potential problems that might be linked to her son’s exomphalos.
Claire had a series of scans, which gradually ruled out other potential problems that might be linked to her son’s exomphalos.
So she went to go and get another sonographer, who confirmed that they felt there was a problem there but we had to wait a few days for a fetal medicine consultation so I think that was the Friday and then, on the Wednesday, we went back to see the head of the fetal medicine centre there, who confirmed that the baby did have an exomphalos* and that it was large. They couldn’t see other signs of any major problems but, when we’d had the first scan, we had been given the leaflet, which I’m sure most parents get, with pretty gloomy statistics about what that meant for the baby’s outcome. And, one thing that really sticks in my mind, is seeing on the end of the word exomphalos, the letters ‘halos’ and thinking that doesn’t bode very well.
So we, when we had the original diagnosis we came home and looked for all the information we could find. We had the GEEPS website, which was really helpful but limited, and I think we just read and read over and over again all those stories and tried to kind of find as much positive information as we could. We also used the internet to try and look for any research studies to try and establish what, what the odds might be. Were there any other options? What should we be thinking about?
So it was good on the first scan with the fetal medicine consultant that they could see some potential issues. They saw some scoliosis and other things but, on the whole it looked quite good. And then that started off as a series of tests and scans, which went through the whole pregnancy, every week it seemed. We had lots of cardiac scans. I had an amniocentesis, which thankfully came back clear. We also had a, a microarray test for Beckwith-Wiedemann Syndrome, which is linked to exomphalos, which also thankfully came back clear.
So, as time went on, it looked more positive because we were eliminating some of the potential problems through looking at scans but, obviously, all the time the consultants were saying they couldn’t tell us until he was born exactly how big it would be, what the issues would be. So [laughs] so that was really, it was reassuring as we went on. I felt like we were getting more and more better, positive knowledge, so that was great.
* Gastroschisis
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.
* Exomphalos
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.
In some cases doctors also discussed with parents the option of ending the pregnancy. While many parents do decide to end or ‘terminate’ the pregnancy when they learn their baby has a serious problem, the parents we interviewed for this study did not make this choice and found the sometimes repeated discussions of terminations upsetting. Specialist midwives were often very supportive in giving reassurance and advice in these early days (for more see ‘Getting a diagnosis that the baby has a problem and needs neonatal surgery’).
Simon and Sally-Anne were stunned to be told their son had an exomphalos. The doctor painted a dark picture and repeatedly offered them a termination.
Simon and Sally-Anne were stunned to be told their son had an exomphalos. The doctor painted a dark picture and repeatedly offered them a termination.
So that was at 12 weeks and quite unusual I think to have had the scan and the meeting with the consultant in the same day so you must have felt like you were hurtling through this experience.
Sally-Anne: Yeah.
And they, there was, they just sent you away and there was a gap of a few weeks before?
Sally-Anne: Yeah it was 12, 13, 14 it was roughly around about two, two and a half weeks because it was just they’d left the ball in our court of what to do. Because at that point we didn’t, all we got was this tiny little leaflet where it says baby’s organs are on the outside of the body and, and that was it that was as much as what we knew. I can’t even say if he turned around and used the phrase exomphalos, I can’t, I don’t know, I can’t, you know, because it, it was just so doom and gloom painted this really dark picture saying that not many of these baby’s survive and there’s always, you know, there’s other congenital abnormalities for example Edwards syndrome and it just painted this really dark picture. And it was only until after we came back home didn’t we and the we sat there, both me and Si was talking and Simon said them famous words, didn't you, and that was.
Simon: If his heart is still beating and he’s still breathing, that’s good enough for us, we don’t need to terminate.
Sally-Anne: And that was our decision that we was like, you know, we’re gonna carry on, we’re gonna carry on through this. when we went back, I mean, even after telling the, the professor that no, you know, we’re gonna continue, we’re gonna continue with the pregnancy, he’s got, you know, he’s still our little boy, he’s still our baby and it doesn’t matter how he is because we’ll love him none the less. And even after saying things like that we were still offered the, I mean we was offered the termination, up until round about, I’d say round about 18/19 weeks.
*Exomphalos
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. Alison remembers how bluntly the doctor delivered the test results and immediately offered them a termination.
Alison remembers how bluntly the doctor delivered the test results and immediately offered them a termination.
Alison: No, no it was my consultant obstetrician. And that was just such a horrible appointment we waited quite a long time, we went back in the afternoon so the morning surgery was over so we were the only people waiting in the clinic and she kept us waiting about 45 minutes. And then she called us in and before we’d even sat down she said, ‘You’ll be pleased to know it’s not Downs Syndrome and it’s a boy’.
Okay, good [laughter].
Martin: As cold as that.
Alison: And that was exactly how she, how she put it. And we were taken back because we didn’t really, the sex was irrelevant at that point we didn’t want to know what it, what the sex was of the baby. We didn’t know that they were specifically looking for Downs so I was a bit taken back and I said, ‘Oh well what exactly does that mean for the baby?’ And she said, ‘Well, you know, it means that it’s not Downs Syndrome and, you know, it’s going to have an operation when it’s born.’ And it was a matter of, you know, ‘Can you give us any more information than that, you know, is the baby going to survive after the operation?’ And she said, ‘All operations are risky’. I said, ‘Right.’ I said, ‘So do we go ahead then?’ And she said, ‘If you want a termination I can arrange it.’
Gosh, and you were about 22 weeks, by calculation you were about 22 weeks pregnant at the time?
Alison: I was yes, and he was already kicking and, and at that point I did get quite assertive and said, you know, ‘That isn’t what I’m asking, you’re not listening to me I do not want a termination but I need to know what’s going to happen to my baby,’ and she really wasn’t very helpful.Harry and Michelle were not prepared to be asked whether they wanted to terminate or not.
Harry and Michelle were not prepared to be asked whether they wanted to terminate or not.
Michelle: No the next day they asked.
Harry: Yeah the next day.
Michelle: The next day.
Harry: Do you want to terminate and it was kind of well first we weren’t expecting the question, secondly, don’t feel as though I’ve got nearly enough information to be able to make such a significant decision and I think luckily for the condition that it was, there was a very easy decision to make which was obviously no we don’t but I think if it had been a bit more kind of marginal or it had been something that was going to impact his life for the rest of his life.
Michelle: Well the longer term impact that we were interested because we fairly fully know but at the time from what they did know it seemed as though it would be fairly, there will be hernia’s there will be things that are completely repairable and wouldn’t necessarily have a longer term impact on quality of life.
Harry: Yeah
Michelle: And also with two other children to consider that’s an important factor for us. So yeah so we had a night of not wanting to look stuff up but wanting to, needing to look stuff up, some things up because we didn’t really know much about the condition and what it meant or what it was or what the rates of success were from surgery or any of those things so we wrote a long list of questions and took those along with us the next day and met someone in the high risk team who scanned again and was very, very good actually at answering all of our questions setting our mind at rest and being very honest equally, in equal measure when she needed to be. And actually she was great wasn’t she?
Harry: Yes
Was she a stenographer, the second day, or was she-
Michelle: She no she was actually a consultant and not the head of the high risk team who subsequently then took care of me through my through my pregnancy, she worked for him so she had another sonographer with her in the room but just answered, I had lots of questions about what it meant, what it was going to mean for the pregnancy what the long term effects were going to be what, you know, what risks there were or what the worst case scenario was.
Harry: That’s the difficulty of it I suppose is you want to kind of a weighted probability of what was going to happen.
Michelle: Is it going to be okay, you know.
Harry: Almost sorts of questions they can’t really answer because they don’t really know.
Michelle: No and it’s, and at every stage depending on what happens obviously it sends you off in a completely different direction with a different set of risk factors so there is no standard answer, there is no standard outcome so we were told that, you know, it would mean a hospital stay of anywhere from a few months up to a year.
Harry: Not at that stage, though.
Michelle: A huge range, we weren’t told that then but we knew that later.
Harry: Yeah.
Michelle: So, you know, a huge range of outcomes but yes were fundamentally asked if we wanted to continue or not.
Harry: Well I think the decision was quite easy actually to do that.
Michelle: Yes just unexpected, wasn’t expecting the question.
And was there as sense of how quickly they needed an answer, was it sort of go away and think about it for a few weeks or?
Harry: Well I think she wanted to, we didn’t actually we didn’t answer.
Michelle: We didn’t answer I was quite taken a back.
Harry: I got the impression they wanted one.
Michelle: Really wasn’t expecting it.
Harry: Immediately but, I wasn’t impressed.
Michelle: She was kind of ‘Well I’ve answered your questions now what do you think?”
Regular scans during the rest of pregnancy
Women often had to have a series of tests and scans through the rest of their pregnancy. A common regret that mothers described was how further scans often focused on their baby’s anomaly, and never seemed to look at the whole baby. They were sad not to have photos of their whole baby or their face. Joe said, “we never really got to see the rest of [the baby] because it was always concentrated on what was inside.” The scans were the moment when their pregnancy started to feel like a very medical and monitored pregnancy.
Jane was going for regular scans and one day asked if she could have a picture of her baby’s face. The sonographer had been focussing on the exomphalos.
Jane was going for regular scans and one day asked if she could have a picture of her baby’s face. The sonographer had been focussing on the exomphalos.
* Exomphalos
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.
Conditions which need surgery shortly after birth are often rare conditions (see ‘What is neonatal surgery?’). Parents remembered finding it difficult to get clear guidance on risks and likely outcomes for their baby at the time of diagnosis, and felt messages from professionals were often mixed. Claire described how she “pressed the consultant” about her son’s chances based on all the scans he’d had. Amy E’s daughter was diagnosed with gastroschisis, and was told by the consultant, “‘If you had to choose to have something wrong with your child, you would choose this because 95% of them are fine in the end’ which is it’s kind of nice to say, but you’re at a point when you’re like ‘I don’t want anything wrong, thanks’.” Parents were often referred to a specialist paediatric surgical hospital after diagnosis (for more see ‘Living with uncertainty before and after neonatal surgery’ and ‘Transferring the care of mother and baby to a specialist hospital’).
Mike and Fiona remember how they were told the news of their daughter’s exomphalos. The doctor couldn’t say how severe it was and referred them to another hospital.
Mike and Fiona remember how they were told the news of their daughter’s exomphalos. The doctor couldn’t say how severe it was and referred them to another hospital.
Fiona: Yeah and we took we took into, we were taken into another room and she told us more about exomphalos*. And she could, she said that there was, you know, ranges of severity from just a small hernia, which they would be able to fix at the hospital, to more serious surgery, which we’d need to go to the specialist hospital for.
Mike: That, I suppose that was quite a good thing in that, that was within fifteen minutes of actually having a scan, we knew.
Fiona: Yes.
Mike: Straight away what that there was actually a plan. They actually knew and we were sort of sent onto the next hospital’s care.
Fiona: We knew we’d need to go to a specialist fetal medicine unit appointment.
So that that was the plan that they laid out for you there?
Fiona: Yes. We would need to go for a more detailed scan.
Mike: There was a week or so in between, wasn’t there.
Fiona: Yeah, which was.
Mike: That was the bit that was a really long time, so a week seems like a month, because, you know, you’ve got no information in that in that meanwhile.Alison found it hard not knowing whether her son was likely to survive the surgery he would need.
Alison found it hard not knowing whether her son was likely to survive the surgery he would need.
Sally-Anne was relieved scans showed her son didn’t have any other anomalies, but she knew he was in for a long fight.
Sally-Anne was relieved scans showed her son didn’t have any other anomalies, but she knew he was in for a long fight.
Okay, so was that presented as good news or bad news or?
To me it was good news, it was positive because he'd got no other congenital problems we knew it was just a matter of fact that his abdominal wall muscles had closed so it was just a matter of trying to get that fixed. We was always under the impression and we always knew the risks of [son] you know, them was, them was quite, quite laid out to us, wasn’t they, very thick, you know, there was early labour etc. about, you know, the chance of survivals and things like that. So we, we always knew that we was in for a tough road but it, it was the better out of the two, do you know, what I mean at least we knew it was the lesser evil, you know, he was, he’d got this problem but it was, you know, operable.
It’s that was quite hard because, you know, even, even down to the day before I had him and that I couldn't, I couldn't picture a baby, all I could see was this big what, you know, what was going to be this big hernia* coming out, you know, coming out of his body. See so when you know when you see like people who are pregnant and they’re like oh yeah well we’ve had the scan and you can see he’s got a lot of hair, you know, but I looked at the scan and it was like you couldn’t see none of that all we could see was our baby’s got a lot of fighting to do, you know, and it’s, and it’s that side of it that was, you know that was hard as well wasn’t it cos we just, we just didn’t know where to turn. We just didn’t know where to turn.
* Congenital
A congenital disorder, means it is present at birth, sometimes known as a birth defect, is an error of development that occurs before birth.
*Exomphalos
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.
* Hernia
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.Joe wanted to make a happy surprise for her whole family. She asked the sonographer to write her baby’s sex secretly in an envelope and the card shop to pack a box of surprise balloons in the right colour.
Joe wanted to make a happy surprise for her whole family. She asked the sonographer to write her baby’s sex secretly in an envelope and the card shop to pack a box of surprise balloons in the right colour.
*Footnote definitions:
Exomphalos
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.
Gastroschisis
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.
Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.
Edwards’ Syndrome
A serious genetic condition, caused by too many chromosomes, also known as Trisomy 18.
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