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Parents’ experiences of neonatal surgery

Getting a diagnosis that the baby has a problem and needs neonatal surgery

While some parents were given a diagnosis of their baby’s condition at the first scan, it was common for people to have to wait to see a fetal medicine specialist to find out more. This often meant there were several days of anxious waiting, with very little information to go on. It was a worrying period, parents wanted both information and certainty but understood that was not possible, and in some cases half wanted not to know. Parents often felt they were in limbo, not knowing how serious the condition was, and even if their baby was going to be able to survive. 

We grieved I think for the baby we thought we were going to have and the baby that we were going to have.” Fiona

“I remember keeping ask, keep asking what were the odds, the percentage and they were very reluctant to give us any sort of, you know, 75 survive 25 don’t they said its very much an individual case by case basis they have to have to a better look at it, monitor him as he grew in the womb” Louise
 

Alison describes how she and her husband were told it wasn’t clear if their baby was going to be able to survive.

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Okay and I know this was a long time ago but can you remember who was talking to you at that point was that the stenographer or had they brought a fetal medicine doctor in?

Alison: No he was, no a fetal medicine doctor he was actually specialist in abnormalities I suppose and he was retired and only came in for specific cases.

Okay.

Alison: So they called him back in and he was the one talking to us while they were doing the scan, he was the one talking to us about what was going on and he then took us down for the amniocentesis so. Although he didn’t really give us a lot if information about what the condition was that [son] had they just said that there was a gap in the abdominal wall and it was a type of hernia*, that’s all we knew.

Okay, So it sounds as though they diagnosed the exomphalos* in that scan do you think?

Alison: Yes, yes they had yes.

Martin: Yes I think so.

Okay.

Martin: Did they measure it in that scan or?

Alison: No, no they didn’t measure it then they just, they just confirmed that that was the condition.

Okay.

Alison: And they called it a hernia, they didn’t actually call it an exomphalos at that stage they just said it was a hernia. And to be honest at the time I didn’t really know that they meant on the outside of the tummy I thought maybe, well when you had a hiatus hernia then its internal isn’t it, so I thought maybe it was inside so, we didn’t really understand.

Martin: No.

Alison: What, what was happening really.

No, and was completely unexpected?

Alison: Yes, absolutely yes.

Okay and can you remember what they were, what they explained they were testing for with the amniocentesis?

Alison: They didn’t tell us.

No.

Alison: They told us nothing at that stage.

Okay.

Alison: We left the hospital not really knowing a lot and I contacted my midwife who was fantastic she’d been really good through the first pregnancy and you know was very friendly so I rang her straight away and explained what had happened and she came straight over. And she, she drew us a little diagram of what, you know, what the hernia was and gave us a little bit more information but, but that was it and it just a case then of waiting until three weeks later when we had the results from the amniocentesis.

So there was a, that was the waiting period of waiting for the results?

Alison: Yes, yes they said they have to wait for the cultures to grow.

Okay, so you’d seen the fetal medicine specialist on that first day?

Alison: Yes.

And then you were just sent home to wait for those three weeks?

Alison: Yes.

Can you remember what those three weeks were like….?

Alison: Horrendous absolutely. You know they did sort of say that they weren’t sure at that stage whether the baby would be viable so, you know, we just went home not knowing whether the pregnancy was going to continue or what would happen if we did continue with the pregnancy, you know they said that he would need surgery straight away if, well we didn’t know at that stage that he was a he. But it was all very foggy, it, there wasn’t an awful lot of clear information given to us.

* 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.

* 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. 
Parents said they recalled vivid memories of their next appointment with the fetal medicine specialist. Claire said sitting in the waiting room for that meeting felt very odd, “just a very other worldly kind of experience”. Some felt they were lucky with their consultants, who were kind and reassuring. Others were upset by what they experienced as a blunt or cold manner. Amy chose to change hospital because of this. 

This was often the stage at which the option of terminating the pregnancy was discussed, although none of the parents in our sample took this option (see also ‘Before finding out the baby has a problem - going for antenatal scans’). Because all of the people who took part in our study were people who had experience of neonatal surgery, we did not include people who chose to terminate a pregnancy. But you can read more about people who did make this choice on our website Ending a pregnancy for fetal abnormality.
 

Claire’s consultant was kind and reassuring. He offered her an amniocentesis, which she agreed to, as she was keen to get as much information as she could.

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Age at interview: 34
Age at diagnosis: 33
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And tell me a little bit about the appointment that you had at the fetal medicine unit.

Very odd feeling being in the waiting room kind of wondering why everybody else was here for. And also it’s quite close to where the main scan department is so I was watching people go in and have their, you know, twelve or twenty week scans and that’s quite surreal. I just felt it was just a very other worldly kind of experience.

We were lucky that the professor of fetal medicine that we saw, was very kind, very reassuring and explained that during the scan, he wouldn’t say anything. He would just really concentrate on the images and then, at the end of the scan, he would talk us through what we’d seen. So obviously, it was terrifying and we were thinking kind of the worst as he was scanning but he was very clear and I felt that he was being totally honest with us, which is, you know, what we kind of needed. And he offered us, at that same appointment, to have the amniocentesis, which we’d already kind of decided that we would want to have. Not because we were clear what we would do depending on the result, just that we felt we wanted the information, so we had the amniocentesis at that same initial appointment. Obviously, we didn’t have the results for a period of time but at least we felt we were getting as much information as we could at an early stage.
 

Amy had researched exomphalos* at home and so was clear she wanted to give her daughter a chance. She found the consultant’s manner very negative.

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Age at interview: 39
Age at diagnosis: 33
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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 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. Although there was a nurse that was always there as well and she was excellent, I have to say. She was really attuned on me and my partner and how we were together and she helped us with that and so actually, felt through the pregnancy is, this was at the first hospital we were at, that this nurse was kind of the shining light and everything. She was really, really helpful and in the end we decided to change hospitals. 

I hadn’t realised that in this country you could choose where your care is given and we decided to change where we were going and I ended up sending a letter to the doctor to tell him of our decision. But I also sent a letter to her because I felt that she had been just as equal in the care up to that point.

No, he was he was fetal medicine and he was he was very stern. There wasn’t any warmth. He was he was very matter of fact. But, when you’ve just found this out and you’re trying to process what it means to you, to your child, it was, it was hard. It, it needed a different approach. I needed, I needed to know the full picture and I think that, that’s something I never felt at that hospital, was a well-rounded picture that, you know, some babies will live and they may have other problems [dud de dah]. I always felt by this doctor that there was a pressure to terminate, that I wasn’t making the right decision. Now I think some partly that was them or and maybe partly how I was interpreting. But I felt like I should have terminated in in the eyes there and that wasn’t something I was prepared to do.

*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. 
Although parents were often given a diagnosis at that second appointment, they might also be encouraged, as Claire above described, to have further tests, including an amniocentesis or CVS, to rule out other congenital anomalies or genetic problems. Some of the conditions doctors were testing for would have been very serious, such as Edwards’ syndrome*, a condition which babies usually cannot survive. Parents were relieved to receive the all-clear on these other complications and were almost relieved to have just a single diagnosis such as a congenital diaphragmatic hernia (CDH)*. None of the exomphalos* parents had other problems detected but some had major associated difficulties after birth.
 

Jane was terrified of having a CVS, but relieved that it came back clear for Edward’s syndrome. Her daughter’s exomphalos paled into insignificance.

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So we were offered, on the spot, a CVS and I’ve always had a complete a real terror of having a, a, a CVS or an amnio done. But because I think we were just told that, you know we were told “you can have it, basically, now or come back and have it, you know, in a week”. And I just said, “No.” I just said, “I want it now.” Because I knew that if I went away, I wouldn’t come back for it. And again, that’s something else, you know, I end up just getting more and more wound up by it. But it was, I think, how it was done for us, is just extremely considerate and kind. So had the CVS done, which was fine. It wasn’t particularly unpleasant or anything. It was fine and then waited, and where we are and certainly when this happened, which was eight years ago, you normally get the results back extremely quickly because it’s a bit of, we have somewhere that’s a real centre of excellence with the results. But, unfortunately, these spanned Christmas so that was, basically, the worst Christmas I’ve ever, ever had and, hopefully, will ever have [laughs]. Because we spent the whole of Christmas worrying about what was wrong with the baby if, if anything. Well, we knew something was wrong but we didn’t know whether Edward’s syndrome* was a problem.

So we then got the results back. I think it took five or six days, normally it would have taken two. But I know now that in other parts of the country that’s, what we experienced is just the norm if not longer. So that was a really worrying period and it came back negative which was amazing. And it was weird because I think having had that week where we just thought there’s a possibility that this baby just has no chance of life whatsoever, that once we got the results back, then it was like, ‘oh, no Edward’s syndrome’. It kind of make the exomphalos* pale into insignificance a little bit because we thought, you know, we spoke to the doctors, who basically gave about fifty-fifty chance of the baby being okay and we just felt, you know, we were offered the, the, the possibility of a termination. But we felt that there was a chance of the baby having a good healthy life and we felt that was something that he or she deserved, basically.

*Edwards’ Syndrome
A serious genetic condition, caused by too many chromosomes, also known as Trisomy 18.

*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. 
 

Sally-Anne and Simon had an amniocentesis and were relieved it showed their son just had exomphalos. She knew they were in for a tough road, but they knew they wanted to continue the pregnancy.

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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.

And how many people can you remember, I know this was a long time ago, can you remember how many people you saw in between 12 weeks and 18 weeks, how many appointments you had?

Sally-Anne: I’d say probably around about two or three because I went up for the amniocentesis didn’t I, and I had that at, I think that was done at 14 weeks. No that was it they wanted to do the CVS test wasn’t they, but they couldn’t do it cos [son] had moved so it would have meant going through my back or going through [son] basically so he’d moved, so we went for the amniocentesis.

Okay.

Sally-Anne: And then we came away and we had to wait then for the test results which was, I think was around about two to three weeks and I had a phone call where they turned around and said to me that [son] had got no other congenital abnormalities and it was just an exomphalos but it was a very large one.

Okay, so was that presented as good news or bad news or?

Sally-Anne: 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. 

* 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. 
Once they had been given a diagnosis, parents were understandably keen to have as much information as possible about what it meant for their baby, and what the likely outcomes were going to be. They were often told at this stage their baby would need surgery, but doctors were unable to give them firm facts and figures on how well their baby would be when it was born, and the extent of surgery and care they would need.
 

Louise waited three days for her son’s diagnosis for congenital diaphragmatic hernia (CDH)*, and then she wanted to understand his chances of survival.

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Age at interview: 32
Age at diagnosis: 26
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I think it was three days but it could have been two days; it seems like an eternity to find out what, what it was. And I think I learned about myself in that sort of situation I wasn’t interested in all the people trying to care for your feelings and things, I just wanted to get straight to the end and say okay, what’s the prognosis, what’s the odds of one survival or two that he’ll have to live with something for the rest of his life. So we went to the [hospital name] after that where they explained the situation in a lot more depth we were put under the consultant [doctors name] in the [hospital name] who was marvellous, really great. I remember keeping ask, keep asking what were the odds, the percentage and they were very reluctant to give us any sort of, you know, 75 survive 25 don’t they said its very much an individual case by case basis they have to have to a better look at it, monitor him as he grew in the womb they confirmed obviously that [first son] was fine he didn’t have that. I was trying to think what happened, we had lots of appointments in between like I said just to keep track with scans they were scanning his heart and his lungs because his intestines were actually growing up in his chest so they were concerned for his lung and his heart. they gave us an amino they thought it could be Downs Syndrome so they explained the risks of that, that we could lose the both of them if they done that I think by that point we had to know yes or no whether he was Downs Syndrome so we went for that and we found out he wasn’t, which was great. I can’t think of anything else.

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

Harry and Michelle’s son had just been diagnosed with gastroschisis*. They wanted to know more about rates of success for the surgery and what the long term effects might be.

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Harry: Yeah at that point where they ask you that question which we weren’t prepared for.

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 reparable and wouldn’t necessarily have a, 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 lot 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, was quite easy actually to do that.

Michelle: Yes just unexpected, wasn’t expecting the question. 

*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.
Once the diagnosis had been confirmed, parents started on a pathway of regular tests, transfer to a hospital with a specialist surgical centre, planning the birth and tried to enjoy the rest of their pregnancy as much as they could. 

*Footnote definitions:

Edwards’ Syndrome
A serious genetic condition, caused by too many chromosomes, also known as Trisomy 18.

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.

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

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.
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