Pamela

Age at interview: 41

Age at diagnosis: 41

Brief Outline: Pamela was expecting her third child. Her son came very early, aged 27 weeks. He developed NEC* and needed bowel surgery.

Background: Pamela is a patent attorney. She is married with three children.

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Pamela was pregnant with her third child. Her waters broke very early and her son was born aged 27 weeks. He was not very well, and the general hospital where he was born didn’t have the facilities to look after him, so he was quickly transferred to a larger hospital which was 30 minutes’ drive away. It had a larger neonatal intensive care unit (NICU)* to care for him. Pamela was also transferred with him. 

He was born with a lung infection and sepsis and needed to be on a ventilator to support his breathing. But when he was a few days old he also developed a problem with his digestive system and doctors thought he had developed necrotising enterocolitis (NEC)*. Pamela and her husband met with the surgeons and their baby was taken for surgery to investigate how much of the bowel was infected and needed removing. Luckily surgeons only needed to remove a small section of his bowel. He was in the NICU for three weeks and then transferred to the high dependency unit and eventually back to their local hospital. He came home at the age of three months and three days. He still needed oxygen for a few weeks after he was home, but at the time of the interview he was 9 months old and making good progress. 

*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. 

* 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.

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

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.

Pamela described how she had to put complete trust in the doctors as she handed over her son. He was going to die if they didn’t operate immediately.

Yes they said well basically they wouldn’t know, didn’t know how bad the situation was until they actually opened him up and looked at it and they said it may, they explained to me how they’ll take out the bit of necrotic gut in there and they'd need to take out the necrotic gut and that they’ll make a stoma on the surface. And I at that stage didn’t have a clue what a stoma was and my mother-in-law knew because she had friends who’d had bowel cancer and so she explained that they would make a stoma with the two ends and bring them to the surface of his tummy so. She kind of assumed I knew what a stoma was, you know, which I didn’t, I had to ask and that, you know, that was what they’d do but, you know, they didn’t know how much gut they were going to have to take out and where it would be and I know when I did the consent form you know, the worst case scenario is they would have to take out the whole gut in which case he would need to be intravenously fed for the rest of his life. And so it was a kind of a funny situation because, you know, he is going to die if they don’t go and do the operation and they’ve got to do the operation and do what they need to do and you just have to completely trust the doctors and the surgeons to do what they’re good at and you kind of hope for the best, that, you know it’s not one of these severe cases.