Mary

Age at interview: 42
Age at diagnosis: 41
Brief Outline: Mary was expecting her first child. He was born by emergency caesarean at 37 weeks and needed abdominal surgery when he was a few days old.
Background: Mary is married. She works in the banking sector and has one son.
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Mary was pregnant with her first child. The pregnancy went well until she developed abdominal pain in her 37th week. She went to hospital to have it checked out, and doctors suspected she was having a placental abruption* and delivered her son by emergency caesarean. Although he was initially well, when he was a few hours old, doctors became worried about his blood sugar levels and he was transferred to neonatal intensive care (NICU)*. He was unable to keep his milk down and his stomach was becoming distended. At two days old he was transferred to another hospital in the same city that had a specialist paediatric surgery unit. He had exploratory surgery when he was three days old, and a stoma fitted. Although doctors performed lots of tests and ruled out many conditions (such as cystic fibrosis), they were never able to work out definitively what was wrong with him. He remained in NICU and special care for 4 weeks until he was well enough to come home. Mary was soon discharged from the hospital that she gave birth in, and was travelling every day to spend time with her baby and learn how to care for him and manage his stoma. He was discharged home with the stoma bag until the surgeons judged he was strong enough to undergo the stoma reversal operation. He had this operation when he was three months old, which was successful. At the time of the interview he was 6 months old, and making a good recovery.
* Placental abruption
A serious condition where the placenta starts to come away from the inside of the womb wall.
*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.
* Placental abruption
A serious condition where the placenta starts to come away from the inside of the womb wall.
*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.
Mary was recovering from a placental abruption, so could not be with her son long before he had his operation.
Mary was recovering from a placental abruption, so could not be with her son long before he had his operation.
Mary didn’t realise how ill her son was. They were concerned about his swollen, tender tummy and so performed an operation.
Mary didn’t realise how ill her son was. They were concerned about his swollen, tender tummy and so performed an operation.
No we were told that there was no physical blockage we were told that there was a bit of the bowel that looks dodgy that had been removed. And we were told that the, you know, they’d taken biopsies and we were told it could be things like Hirschsprung* so that was a possibility, a possibility at that point in time. And also, and they also did say that they were doing more detailed than normal tests for things like cystic fibrosis as well so, you know, we weren’t able to, we weren’t, nothing was ruled out and we were kind of a couple of things were kind of introduced as potentially what the issue was.
* Hirschsprung’s Disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling (pooing) normally.
Mary said she doesn’t think they will ever really know what was wrong, but tests for several serious conditions came back negative, so there was room for celebration.
Mary said she doesn’t think they will ever really know what was wrong, but tests for several serious conditions came back negative, so there was room for celebration.
Yes.
But actually the fact that they were all negative so yes maybe something of it in the future one would be able to diagnose but the fact that we’re ruling out so many really difficult illnesses to deal with was really good news and if we don’t know exactly what was wrong then that’s okay.
Mary was supported in her discharge so she could be with her son who had been transferred to another hospital.
Mary was supported in her discharge so she could be with her son who had been transferred to another hospital.
Mary was daunted at first but soon became an expert at looking after her son’s stoma.
Mary was daunted at first but soon became an expert at looking after her son’s stoma.
* Stoma
Surgeons may divide the bowel in an operation and bring the two ends out on to the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.
Mary felt that there was too much pressure put on her to breastfeed her son when he was unlikely to be able to tolerate her milk.
Mary felt that there was too much pressure put on her to breastfeed her son when he was unlikely to be able to tolerate her milk.
* Stoma
Surgeons may divide the bowel in an operation and bring the two ends out on to the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.
Mary found the conversation with the nurse very helpful in coming to terms with what a weird situation they found themselves in suddenly.
Mary found the conversation with the nurse very helpful in coming to terms with what a weird situation they found themselves in suddenly.
* Stoma
Surgeons may divide the bowel in an operation and bring the two ends out on to the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.
Mary is still in touch with mothers she met in hospital. The bond she shares with them is quite profound.
Mary is still in touch with mothers she met in hospital. The bond she shares with them is quite profound.
Mary and her husband quickly fell into a routine. She really appreciated the support she received from her parents who travelled from Ireland to keep her company while she visited her son in hospital.
Mary and her husband quickly fell into a routine. She really appreciated the support she received from her parents who travelled from Ireland to keep her company while she visited her son in hospital.
Yes, and did they live in London or?
No Dublin, they came and stayed, yes.
That must have been quite a big upheaval for them.
Yes, yes, yes, yes they stayed with my sister but it was just such a lovely thing to do so that somebody’s there because it can be a bit lonely when you come out for your tea break, but you need to also go for the tea breaks and yes that was.
Mary felt she was being trained to take her son home. She was grateful of the expert input, but also desperate to be able to be home.
Mary felt she was being trained to take her son home. She was grateful of the expert input, but also desperate to be able to be home.
So he needed to be putting on weight and I guess also ready to be able to manage him with his, with the stoma at home as well. And that’s quite an interesting one because putting on weight is quite easy to define it’s, you know, daily weighing and him tolerating the milk and him, kind of him, you know, quite obviously putting on weight. I think parents think ready to manage the stoma at home is a slightly different thing because that’s not something they can probably tell you either with a test but I kind of understood that that, well he couldn’t come home really unless we could manage him at home. So and there isn’t any definition of when you’re ready or when you can manage something because it’s not just being able to physically do something it’s also having the confidence in yourself to be able to do it as well and to be happy doing it. And also they’re keen that both parents can do it as well which is harder say for my husband to get as much practice in doing it because he’s only able to nip into the hospital, you know, after the first couple of weeks he was only able to nip into the hospital after work.
Yes.
But, you know, it’s really important that both parents can manage, can empty a stoma bag can deal with the situation when a stoma bag falls off. I think probably, you know, just observation and also looking at my enthusiasm for managing it and dealing with the task. I would say I think it’s fair to say though it’s probably not a test because probably a test is on myself as well of these kind of almost saying to them yes I can do it now I’m happy doing it rather than them, you know, scoring me in the background. I’m sure there’s a degree of that and that’s necessary for the safe guarding of the child but I think, I think a lot of it is also me getting to a point where I was saying to them yes look I am happy about doing this why can’t you know, I should be able to do this at home.
And do they prepare you by having you in and stay for a few nights, is that right?
That’s right yes so we did the rooming in I found, I actually found the rooming in quite hard because I found just living in the hospital 24 hours very claustrophobic. Because I’m someone who likes, just needs to get out, get fresh air so I found that quite artificial. But I can understand why it works for some people, to be honest for me I found the whole experience quite, quite frustrating to be honest so I didn’t really feel I benefitted that much from it.