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Parents’ experiences of neonatal surgery

Necrotising enterocolitis (NEC) - getting ill & diagnosis

Babies born prematurely are at risk of developing a serious bowel condition called necrotising enterocolitis (NEC). If a baby has NEC their bowel becomes infected and severely inflamed. This condition is treated by resting the bowel and antibiotics. If this treatment does not work, surgery may be needed to remove areas of the bowel that have developed holes or the tissue has died. We talked to parents of three babies who developed NEC after being born prematurely.

Nicky’s son was born at 24 weeks and was in neonatal intensive care (NICU)* for several weeks. He was transferred from their local hospital to a hospital that had a NICU. After a couple of days when his condition seemed to improve, he then developed a series of problems and setbacks, including serious infection in his blood-stream, problems with his breathing and feeding, that lasted for weeks.
 

Nicky remembers the date when her son had his first really bad day. NICU staff stopped his intravenous feeding and were talking about the possibility of NEC.

Nicky remembers the date when her son had his first really bad day. NICU staff stopped his intravenous feeding and were talking about the possibility of NEC.

Age at interview: 39
Age at diagnosis: 39
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The 15 February was a really bad day that was the first really bad day where we thought everything was okay and got onto the unit to find that actually no things were really bad. and his feed was stopped all together at that point because of the poor tolerance and I think that was when they started to think that there might be something else going on and I think that’s probably when NEC* or NEC started to come onto the agenda and there was a, you know, they said we don’t think it is but it’s always a possibility so that’s what we sort of have to be mindful of, you know, and watch out for. and I think at some point around that date they thought okay we should probably treat as NEC which was to put nil by mouth, could have been for ten days it was quite a period of time which again to me [laughter] with my background like disastrous yes he was still having the TPN* but that was a big setback. And expressing as well going through all that and then he couldn’t have it was quite frustrating as well as the fact that he was actually quite sick at that point. and I think he got a little bit better and we sort of then had about a fortnight maybe ten days, not quite two weeks of ups and downs and he'd be alright for a few days and then there’d be another sepsis or deterioration or something and he'd be quite sick. and then he'd get a little bit better and then he'd be sick again and his gut was distending by then just getting bigger and bigger and he just looked so uncomfortable with the veins you could sort of see really marked veins he looked like he wasn't far off bursting, you know, if he sort of got a pin anywhere near him he looked like he was going to go pop. although in himself he was actually quite well and didn’t seem most of the time too out of sorts with it and I remember one of the consultants saying he’s a master of disguise and he said I'm looking at, you know, these numbers and the blood results and he said you know and what I’m seeing of him he's not matching what I’m seeing on paper. Which I think was nice in one sense thinking yes go on [son] [laughter] got a little fighter. So the fact that he was quite strong in that respect, he should be looking a lot more sick than he is but yes that was a bit reassuring as well because it was bleak but actually look at him he’s okay and a couple of people have said focus on him look at him, you know, not the numbers not the statistics and that side of things so yes it was nice to be able to do that. 

* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected. 

*Total Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.
Ten days later, staff were worried enough about Nicky’s son to start phoning around specialist pediatric surgical units to find somewhere to send him for surgery. Nicky knew that NEC was serious, but didn’t look up any facts and figures about it as she thought it would be more worrying to do that. 

I didn’t really want to be confronted by statistics and death rates and because I knew it was serious and I knew it could be, you know, life threatening and I didn’t really want to see numbers at that point that wasn’t helpful.

When she was told he needed to be transferred she wasn’t surprised, but it was an upheaval.

Pamela’s son was born 13 weeks early and was cared for in a NICU. His condition went up and down, and she knew he was very poorly. But it was still a shock to go into the unit one morning and see his tummy swollen and very dark in colour. The surgeon was called to speak to her and she was told he needed immediate surgery.
 

Pamela’s son looked dreadful, his tummy was dark and swollen. The surgeon came and explained to her the operation her son would need.

Pamela’s son looked dreadful, his tummy was dark and swollen. The surgeon came and explained to her the operation her son would need.

Age at interview: 41
Age at diagnosis: 41
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Anyway on about the Thursday, it was the Thursday he’d gone back on the ventilator and we were in there, no, he wasn’t on the ventilator he was clearly not very well, he was clearly very unhappy and they stopped his food and I think I hadn’t realised the significance, hadn’t sunk in, them stopping his food. I know they did a scan on his tummy and I can’t remember what they said about it but they stopped his food and he was really kind of stressed and in pain and I remember talking to the nurse and she sort of suggested we give him a dummy because we could get the comfort from sucking the dummy so he had his little dummy. And I would say he was crying and said its probably because he’s hungry because he’s got used to having milk in his tummy now and they’d stopped it and I kind of thought it was the hunger thing. And so that wasn’t a great day and then the next day it was Friday and [husband] had gone back to work so I’d gone in on my own, no his parents were staying so my mother and father-in-law took me in but because it wasn’t visiting hours, they dropped me off and they went onto [local city] and they were going to come back at visiting time. And I walked into the hospital onto the ward and as soon as I walked in the nurse said, “I’ll go and get a doctor”. I went in and saw he was back on the ventilator, he was kind of fairly swollen completely black, back on the morphine just looking absolutely dreadful.

His body was black? 

His stomach was black and distended and so a lovely Doctor called [name] came over and she put her hand on my shoulder and she explained to me what had happened what the problem was and basically he’d got necrotising enterocolitis.

Okay.

And they didn’t know how bad it was until they opened him up to do surgery and it wasn’t long before Ms [surgeon’s name] the surgeon came round and told me about what they were going to do and what the problems with the operation were and what the potential outcomes were and then another younger doctor came and went over the consent form with me and I remember sort of going through this you know, potential problems of removing all the bowels, the fact he might not get through the general anaesthetic. Luckily my, I think my parents-in-law were there at that point, they come in at sort of 2 ‘o’ clock because of visiting hours and then and I remember my mother-in-law coming along and just seeing my face and coming and giving me a hug because she could sense that there was something really wrong and so although [husband] was back at work in [city], you know she was there for me at that point. And I remember trying, having to, sort of call him knowing he can’t drive back from [city] knowing this and I was so upset that I couldn't talk to him I had to pass him over to his mum for her to tell him what was going on.
Victoria’s son was also born very early. He did well for the first few weeks, but then developed NEC. He was transferred to the specialist pediatric surgical centre in the nearest large city, and treated with bowel rest and antibiotics. Like Nicky, she found it very unsettling to be moved to a new hospital after having built a good relationship with staff at the first hospital. Victoria’s son avoided needing surgery at first, but when he took another turn for the worse a few weeks later, he needed an operation. It turned out he had tight narrowing in his bowel caused by scarring from his past episode of NEC. This narrowing is called a post-NEC stricture and he needed surgery to remove the narrow area.
 

Victoria was devastated when she thought her son had NEC again. He hadn’t, but he needed surgery to remove the scar tissue from his previous episode.

Victoria was devastated when she thought her son had NEC again. He hadn’t, but he needed surgery to remove the scar tissue from his previous episode.

Age at interview: 31
Age at diagnosis: 31
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….we got another phone call after that week at about 3 ‘o’ clock in the morning saying Bobby was, his tummy was distended he was having green aspirates and everything again. And they think he’d got NEC* again and you’re kind of thinking well, is this happening again, you know, how can we be so unlucky that, cos Bobby was actually dressed he was in half an incubator ready to go to nursery he was on optiflow so, you know, he was doing so, so, so well and he started to try and latch on which was amazing, you know, after so many weeks. So we went back over to [Women and children’s hospital] and basically after about a week they did loads of tests on Bobby and found that he had what was called Post NEC Strictures so that’s where Bobby’s bowel had from the infection had healed but where the scar tissue had kind of restricted Bobby’s bowel so it made it, although it kind of faeces could get through it had gone quite small. So they need to go in and they prepped us for, Bobby was having a stoma basically what they were gonna do was go in remove the bad part of Bobby’s bowel and then give it time to heal so they were gonna put a stoma in so he was going to end up with obviously his bowel outside of his body and then a bag.

* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected. 
*Footnote definition: 

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.
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