Alison & Martin

Brief Outline: Their son was diagnosed with exomphalos* during a routine scan in pregnancy when Alison was aged 25. He is now twenty-six years old and Alison reflects back on their experiences.

Background: Alison is aged 51 and married with one daughter and one son. Her husband Martin, aged 55 is a football coach.

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Alison was pregnant with her second child. She and her husband Martin and two year old daughter were living in the north-east of England, a long way away from their families. During a routine antenatal scan, doctors discovered that her son had an exomphalos*. Alison had some extra scans but was not advised to have a caesarean section. Her son was born by a normal delivery at 39 weeks and taken to a neonatal intensive care unit (NICU)* in a different hospital for surgery. Doctors operated on him straightaway and he was kept in NICU for 10 days. Their son recovered well from his surgery and was soon sent home. When he was several months old, he developed digestion problems, diagnosed as reflux. He was prescribed medication, but eventually grew out of those symptoms. 

Alison was interviewed with her husband, Martin, over twenty years later. Their son is now a fit and healthy young adult and their experiences of exomphalos are a distant memory. Their son experienced a short period of (growing) pains in his early teenage years, but did not have surgery to try and correct this and the pains soon passed.

*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. 

*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.

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.

So looking back are there kind of key moments that stand out, with kind of any bits of when he was born or a particular meeting?

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.

Alison remembers how bluntly the doctor delivered the test results and immediately offered them a termination.

You go back to the hospital and you have a, did you have a meeting with the same doctor?

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.

Alison found it hard not knowing whether her son was likely to survive the surgery he would need.

And you know I remember asking that consultant who was really cold with us if he, you know, once he’s had the operation would he survive the operation, that for me was important and she sort of just said, well you know, ‘Every operation has its risks so we can’t give you any guarantees’. So, you know, we went through with the pregnancy not even knowing if once the operation was done whether he would live or not really. So I think that should be, you know, really addressed they should have given us more information than, well every operations has its risks, then she just shrugged her shoulders.

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

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. 

Alison’s son had an exomphalos, and she was induced. She found the crowds at his birth invasive.

And I know it was a long time ago but can you remember what the room was like were there a lot of people in there?

Alison: Yes, yes there were three paediatric doctors.

Martin: You wrote it down didn’t you.

Alison: Wrote it down, and two paediatric nurses and somebody else I can’t remember who else and plus ourselves so. And I remember there was a door at the bottom with a window and I remember people looking, medical, you know, medical staff looking through the window as well so it felt a bit like a, Euston Station with everybody looking and whatever and that I think was because it was so unusual, you know, that there was a lot of interest really. So yes there were a lot of people in the room.

Okay, was that reassuring or did that just feel a bit invasive?

Alison: It felt quite invasive really.

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

Started having problems feeding him it would take an hour an hour and a half to get three ounces of milk into him. He'd take the first ounce and then he would scream, just scream and he was obviously in pain he was drawing his knees up and it was obviously, you know, in a lot of discomfort. So I went to the GP and he said, ‘Oh it’s fine it’s just normal’ and I kept going back and then they said, ‘Oh it’s colic’ and I said, ‘It’s not colic, it’s not colic’ you know, and they said oh, they told me I was an over anxious mother because he’d had surgery and I needed to treat him as a normal baby and I kept saying to them there’s something wrong, you know, this isn’t right. He would wake up between five and fifteen times a night, he couldn’t lie flat he would scream and that went on for a long time. I think when he was about four months going back and going back and forth I think the GP then had contacted the unit and they said it’s possible he had a stomach ulcer and maybe that was causing the problem. So they put him on tagamet which was medicine they didn’t usually use for children and that did help, he was on gaviscon as well in his milk and it helped a little and then, you know, it would revert back and that went on for oh I think until he was about ten months, we moved, moved from [city] and going back and forth all that time. and we moved to the Midlands and they transferred him to [city] Children’s Hospital and they were fantastic they had him in straight away and they put a camera down and they diagnosed him with a esophagul reflux and they said his esophagus was completely ulcerated and because the sphincter valve at the top of the stomach wasn’t closing and the milk wasn’t going into the, into the stomach it was coming back out and all the acid was going on the ulcers and that was why he was screaming.

Alison felt that her hospital had the surgeons for the exomphalos operation, but didn’t really know how to investigate her son’s ongoing problems.

Yes I think maybe that was the case, I don’t think they knew what to do with us in [city] really and you know, they, you know, they obviously have the surgeons to do the operations and whatever but they didn’t seem to have the knowledge for the follow up problems. but when we went to [city], you know, straight away they, they sort of had him in and you know and he was so poorly as a baby it wasn’t just the feeding, he picked up anything that was going so he had constant chest infections, constant colds, he had gastroenteritis where they wanted to hospitalise him because he was so poorly with it and, you know, it was just one thing after another. And even when we went to [city] and they wanted to have him in to put the camera down twice, three times, it was the third attempt because the two previous times he'd been too poorly with a cold and a chest infection to actually have that procedure done. So he was just obviously a very poorly baby, he was just his immune system was low and he was picking up everything up. So it was just constant with him, you know there was always something, he had bad eczema or, you know, there were lots of other issues and I think, you know, I think at [city] they just thought oh well you know I was being over anxious and, well, they told me I was being over anxious. And I was adamant that I wasn’t, I knew that there was something wrong.

Yes.

I just really felt that they didn’t listen to me until we went to [city] and we met Mr [name] and he, he sort of said right, okay we’ll get to the bottom of it. And that was when they had him in overnight and they put the camera down, put a probe and measured the acid in the esophagus and that all came back abnormal, so and then they put the camera down.

Alison and Martin found the conversation with their surgeon unhelpful. She knew that every case was different, but would have liked more information about what to expect.

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 its 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.’

I think just more information on what they were going to do and what the outcome was likely to be and I know that’s difficult for them to say because every case is different and, but it would have been helpful I think to know that other children had been born with this condition and that, you know, what the outcome was with them. But we had nothing, we had no experience to fall back on, or nobody else’s experience given to us. So really it was, you know, before the internet and so we had very little information that we didn’t know an awful lot of what we were expecting, you know, we were just told that.

Martin: When people asked we said “oh it’s a hernia,” that’s what we were told.

Alison and Martin’s son had exomphalos and is now grown up. They reflected back on growing pains he developed in his teens, and how he overcome his self-consciousness of his scar.

Alison: He had some issues when he was about 13 when he started to go through the, a real, you know, growth spurt, he was having, you know awful pains in his stomach and we took him back then and we went to the hospital and they said they felt to was probably scar tissue and they thought that he probably needed surgery just to loosen it all up, we just had to make the appointment and check in whatever. So they booked him in to go and have some surgery to sort it out and it was still very, it was still protruding quite a lot, there was no, there was no muscle behind the scar because the muscle sort of came around it like that so it was like an, you know, like an oval shape and then you had this protrusions where the scar was. So they said that they could operate and, you know, it would stop the pain and they’d release some of the scar tissue and whatever. But they did a scan before they operated and when they scanned him they said they couldn’t do the operation because his liver was directly below the scar…. 

Martin: It was sitting just behind.

Alison: …. it should have been tucked up underneath, you know, that’s normally where it would have gone but when they operate they just put it back wherever it will fit basically. So they were, they said that the operation would be too risky so it was just a case of hoping that he would outgrow the pains, which he did and he was going through a growth spurt and eventually it calmed down again didn’t it yes, yes. And they did, when he was a baby they did say to us that if he wanted at any stage to have surgery to have a belly button put in then they could do that for cosmetic reasons. And we just felt he’d been through so much that it’s, you know, we left that until he was old enough and if he wanted to make that decision himself then he could.

And was he ever interested in doing it?

Alison: Not really he was very, very self-conscious of the scar, particularly as a teenager, you know, if we went on holiday he wouldn’t go in the pool without a T-shirt on or he'd carry a towel across him he was very, and he was quite shy as a boy as well so you know, I used to say just tell then if anybody asks just tell them it’s a shark bite or, you know, just make light of it and whatever but he was very conscious of it. But he just didn’t want the operation either so but you know, he's outgrew that as well he sort of got a bit older and got more confidence in it and it didn’t bother him at all then, you know, once he got to about 15 or 16 he was quite happy with it.

Tough thing to grow up with though I think.

Alison: Yes.

A physical, you know, scar that marks you out. 

Alison: Yes

In such a kind of prominent area, if you were a girl it would be so much easier wouldn’t it because you could just hide it with swimming costumes.

Alison: That’s right but obviously when he went swimming in school and things he would be really conscious of it.

Yes, did he get teased when he was little?

Alison: I think he, I think he did.

Martin: Yeh he’s never, never really said anything has he.

Alison: No.

Martin: I don’t, you know, it was never sort of expressed that, you know, that people have been taking the mick out of him or anything like that.

Alison: I think it was all curiosity.

Martin: Curiosity as to what, what it is yes.

Alison: Saying what’s that? You know. What’s that, why haven’t you got a belly button, what’s that on you’re? You know, that sort of thing.

Yes, yes.

Alison: So and especially as he was quite shy I think that was quite difficult for him to deal with.

And do you think he do you think he answered, did he have an answer for, did he have a script, I mean I’m imagining that it would be handy if he could just develop a, you know, a quick one liner to kind of back, to kind of back the question away or.

Alison: We used to just tell him to explain, “Oh I had an operation when I was a baby.”

Martin: That was all they needed to know.

Alison: And that was all he had to say really and that tended to answer their question and then they would go on to something else, just, you know, children, short attention span and got bored.

Martin: Often they’d answer the question that’s been asked but they’ve left the room. And his anxiety around the operation do you think that, the belly button operation, do you think that’s maybe part of, you know, it must have been quite frightening to have gone for potential surgery at 13 and then to be told its too dangerous, I imagine that would make you very nervous about it.

Alison: Yes, I don’t know if we actually told him it was too dangerous I think we actually just said to him that, you know, they wouldn’t be able to do it now because his liver was, you know, it was in the wrong place but it wasn’t an issue, it wasn’t a problem with it being there but was probably better not to have the op.

Martin: It didn’t stop him doing anything did it?

Alison: No I mean he was.

Martin: Still very active with his sport and football.

Yes he didn’t have any problems with, ever any stomach injury or being kicked by a ball or something like that.

Alison: No, no. And he plays, he played football from the time he was 6, in a team and he was absolutely football mad and, you know, loved his sport and still plays now. So no it didn’t stop him with his sport or and he had swimming lessons, you know, carried on with that so yes to didn’t stop him doing anything.

Martin and Alison reflected back on the journey they took with their son who had an exomphalos, over 20 years previously. It wasn’t an easy road, but was definitely worth it.

Alison: It’s all worth it basically, all the, you know, it’s not an easy road, you know, even once the operations done, that’s not to say that another baby might have the operation and may be absolutely fine and not have any digestive problems but it’s all worth it, you know, [son] is a really healthy bright intelligent man, he’s done really well with his career and he has no health issues now so, you know, just stick with it it’s worth it in the end.

Anything to add to it?

Martin: Yes, yes I think it was there seems some a sort of light at the end of the tunnel when he got to four or five because he, you could see improvement in him and by the time he was six or seven he was doing everything well what everyone else was doing so..

Alison: Just normal child.

Martin: Just normal play, climbing, throwing, football, sport and yes came through it, came through it in the end.