Joanne

Age at interview: 41

Age at diagnosis: 34

Brief Outline: Joanne’s first daughter was born healthy, but at 10 weeks old became seriously unwell. She suffered a blood loss to her bowel, and had large section removed. She is now 7 years old, living with the complications of a short bowel.

Background: Joanne is married with three children. A quality assurance manager in the pharmaceutical industry, she is now a full time carer.

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Joanne was expecting her first child. Everything went well with the pregnancy, although there were concerns on the scans about a 2-vessel cord, and her daughter was born healthy at 39 weeks. She was sent home the same day, and was eating and sleeping well for the first few weeks. But when she was 10 weeks old, she became unwell very quickly – experiencing convulsions and turning blue. She was rushed in an ambulance to their local hospital, where doctors stabilised her, and then prepared to send her to a specialist hospital which could offer paediatric surgery and neonatal intensive care facilities, to care for her and try and diagnose what was wrong. 

She underwent many tests, and it took several days for the doctors and surgeons to work out what the problem was. Surgeons identified that her bowel was necrotising and had to perform emergency surgery, on a Sunday evening, to remove the infected sections. At this stage they also feared that she had suffered brain damage and doctors were not clear what her chances were. But a MRI scan showed her brain was fine, so the main focus was the bowel. Surgeons performed another surgery to give Joanne’s daughter stomas and join the remaining bowel together, but as it was under 50cm long. Joanne and her husband were told she would need feeding with total parenteral nutrition (TPN)* through a central line, for the rest of her life.

Joanne’s daughter stayed in hospital for a total of 5 months – she had to have further surgeries to put the central line in, and had some infections. Joanne was able to stay with her in hospital. But once she was stabilised the TPN was just necessary overnight, she was allowed to go home. Joanne’s daughter was 7 years old at the time of the interview. She has a permanent central line fitted which is used every night to feed her TPN. She has regular follow up with the gastroenterologist, and Joanne can take her into the hospital where staff know her well, if she is worried about infections or any other aspects. But she is attending main stream school and hitting all her developmental targets. 

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.

Joanne’s daughter became ill very suddenly and was rushed into hospital. She was desperate to maintain her milk supply and remembers expressing at her daughter’s cot side with doctors all around.

But we talked to the doctor and I remember her particularly a female intensive care doctor who worked all over the hospital and was actually on the bleep as well for the, you know, for re-suss. She chatted to us, you know, I remember asking her quite specifically about what would happen, you know, when we turn the machines off how would it happen, what would happen. I remember I remember even laughing with her though, you know, we in the midst of it all we had, you know, this was going on over now five days a week or whatever, I remember almost with this particular doctor having a bit of a giggle at all the parents, you know, how different we all were in intensive care, how bizarre we all behaved if you see what I mean like, because I was sitting there constantly with this blinking electric breast pump stuck to my nipple, you know, like it come sort of through my T-shirt and stuff, so like all of the male doctors found this all, you know, you could tell really uncomfortable, you know they were coming over trying to have a serious conversation with me and I’d be like yes carry on and you could bits of the nipple being squeezed out and stuff and I was merrily filling up every freezer in the hospital with milk because I was just still pumping and I wasn’t ready to, you know, stop at this stage I had no idea what was going to happen. 

Joanne felt such a strong relationship of trust in her daughter’s consultant that ‘if he moved hospitals, we’d consider moving'.

I just seem to, I seem to have so much, I seem to feel, you know because we have this consultant, you know, her gastroenterologist and I really trust him, you know, like literally if he moved hospitals we’d consider moving, you know, like that sort of a, you know, I joke with him you’re not retiring yet and all that kind of stuff but it, it’s I think it is I don’t know if it is for other parents with very sick children as well but, you know, she’s complex she, you know, I don’t believe there are that many doctors in the country who, you know, you’ve got us this far we trust you, we’ve got a relationship and, you know, don’t go anywhere, because, you know, this is, you know, we’re a team kind of thing, we’re bringing up this child and I need you, you know, and so there is a big element of that. 

Joanne was able to share the good and bad news after her daughter’s last bowel surgery.

But sitting actually in the ward where they’ve just taken the bed from is just horrendous really, you don’t really want to be doing that, that’s kind of, yeah just almost like a recipe for, you know. So and I had updated a few people like I’d sort of been writing long e-mails that I sent out to groups of friends just to give them some idea. I was also a bit concerned about whether she might be covered under insurance or something because she was under three months old, you know, and I didn’t know whether there were any sort of rules. I had health insurance with work and therefore I was wondering whether, you know, up until three months old maybe your baby’s automatically covered and therefore she might be covered so I’d been trying to get in touch with work and things, you know, so there were people who knew and I was, so I think even on that day when we found out everything, I think it was the following day when I sort of, you know, when she had her, say her last resection surgery. I think the following day I had sort of updated everyone with the bad news is, you know, the good news is, the bad news is, they can’t save any more bowel this is the situation we’re in you know, life on TPN* is what we’re looking at, but obviously nobody really understands but you know that’s what you sort of, at least you’re getting some sort of message out there.

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.

Joanne was able to stay in a camp bed with her daughter who had short bowel after surgery for an emergency problem. She made the best of it, and didn’t like those nights when she came home to her own bed.

So in the room I had the camp bed and we sort of had it down most of the time and I could kind of sit and cuddle her and I could have her on my lap and things and we could, you know, watch a bit of telly together and, you know, we could play a bit and she spent a lot of time lying down obviously. Nothing was coming out of her bottom at this stage at all, so no pooey nappies and so really the last pooey nappy had been on that day when she got sick, you know, it came out. I was still expressing at this point I think I expressed for three or four months afterwards, I was still saving it all in case she was able to have breastmilk down the gastric tube although she never really had any, maybe little tiny bits but that was it. 

I had not been out much we had a family grandparents, at one point my step mum set up a sort of rota for every third week, weekend each of them would come down so, you know, there was a grandparent down every weekend which, then they could sit with her and we could come home and so that, you know, we could both spend the night in our bed together and things like that, you know, and sort of. So yeah we did have a bit of support, well quite a bit I suppose support there and things and I did get out, I think if you don’t leave the ward at all it just became bizarre. But that first few times of leaving her I mean when they’re in intensive care you’re not sleeping beside them but after that, after high dependency we were sleeping beside her every night and you’re there all the time and the, it would seem odd to leave even in the beginning it seemed very odd leaving her and when I’ve had my subsequent children I know now why it was so hard to leave her because you’re not ready, it isn’t, it isn’t the right thing to do it’s an odd thing to do to leave the hospital and come home and be hours away from your baby that is a very strange thing to happen. 

Joanne was staying in the hospital with her daughter the night before her surgery, and she was very nervous about the forthcoming operation.

So she went for surgery and I think it was the 16th of October, but maybe you see I’m confusing the dates when she had her line in when she had, but anyway it was about a month or so after they went back in and that’s where I really remember her sort of big op, you know, that was, you know when we talk about surgery, you know, sending your child to surgery and I think that was the, not the first but that was a really big op. I remember the night before we both were staying in the hospital they’d allowed us both to stay because there was a room down at the end, like the oxygen wasn’t working properly and they said they couldn’t put a patient in there that kind of thing. So we had that as a sort of spare room and [husband] and I were kind of taking it in turns to sleep beside [daughter] and I just remember being in the room, neither of us hardly slept at all obviously and just crying and thinking someone is literally going to put a scalpel in my baby, you know, they’re going to cut my baby and this was after she’d had surgery, obviously two major laparotomies already and a and a line insertion so it wasn’t her first surgery by any stretch but it was perhaps the first one I’d had the chance to almost prepare myself for properly, you know, like really kind of. And also obviously we knew that partly her future was hanging in the balance of what they discovered and what they could do you know, in the optimum outcomes that they’d save some, or all of this bowel and yet we knew that was looking unlikely because of the, the dye study and, you know. So but I do, I, I can really remember plainly, you know, at 2:00 am when things are always worse aren’t they but, you know, really actually imagining sort of the scalpel going into her skin and thinking they’re going to cut my baby open, you know. And there were times in that time when, you know, I almost wanted to just detach everything, all of the tubes and everything and just take her away, you know, and I think, I don’t know, but I think a lot of parents in hospital probably get that feeling sometimes, it just seems to be so painful and you’re waiting so long for everything, you know. 

Joanne phoned her parents and then went and sat in the chapel.

But at the time I think I‘d taken her in and you know, at least at that age they’re not really aware of what’s happening and obviously subsequent surgeries, you know, when you’re trying to help them accept the mask and all those sorts of things. But yes so once she was in we’d got into a pattern of sort of going to the chaplaincy in the hospital because it’s quite a sort of private space and there’s a little room where you can light candles which is quite nice considering, we’ve always thought that was quite nice considering, you know, it’s a fire risk and quite easily say no you’re not doing it and, you know, whatever, that they do allow it in there and so yes we would usually sit, you know, we’d usually phone the parents whatever say she’s gone in blah, blah, blah and go there sit there for a while, you know, and obviously you might need to go and get a cup a tea and stuff and the ward have got your number but you didn’t always get a great phone reception in parts of the hospital so you have to kind of, there’s a bit of you that’s a bit anxious that you need to stay near enough that you can be contacted if you need to be. 

Joanne came home with her daughter who had a short bowel. She often felt very lost, and didn’t know what to do.

Yeah I suppose yeah it was, it was complicated because it yeah because say that part of me almost felt like - but she is going to die it’s just a case of when and perhaps even I prepared myself, you know, even though I hadn’t obviously and I wouldn’t have. And so subsequently sometimes I felt myself almost like the way I’ve explained it is I’ve looked over that cliff I’ve looked over that cliff of losing your child, I’ve seen, you know, down there and then I’ve come back from the edge but I still walk very close to it, you know, so it’s always there almost next to me, I know there’s this sort of yeah one wrong footing and I’m slipping over that edge if you see what I mean. But so I constantly walk with this fear that’s there of losing her and yet because she is doing so well now and, you know, she’s seven and whatever there were obviously times when that fades, you know, to the point where I won’t think about it for months perhaps, you know, and then maybe she’ll have a problem or, you know, I’ll have a concern and then that will bring me back or she’ll have to get admitted to hospital or something and then obviously that returns you back to the much more fearful stage.

But yeah when it comes to all the other stuff I was just, I just felt lost, very lost sometimes and so I sort of went and spoke to [surgeon] with this list and I’d asked [husband] as well and I really didn’t have any time, you know, I’ve got a tiny baby and stuff so I sort of written some stuff on my phone when I had time and then like e-mailed that to myself and then printed it out, you know, sort of, and then [husband] had e-mailed me stuff and I printed that out as well so it was just an almost like a stream of consciousness I was a just doing a round. Oh and another thing, and another thing and I don’t know how to do this and you know. And I sort of took that into [surgeon] at one time or e-mailed it to him or something and said look I just, you know, pretty much I don’t know what I’m doing, you know, and I just feel like, I don’t know what I’m doing, I’ve no idea, you know, I don’t know how to, you know, what I’m supposed to do, you know. So I go into the school and I say oh this isn’t really working and they say oh blah, blah, blah and I think should I push that harder do I back off, am I entitled to it, what do I do, you know. 

And or, you know, even things like pushing her to eat and stuff, you know, I know that it’s good for her and I don’t want, in the long run I don’t want her to say oh well why didn’t you just make me eat, you know, but on the other hand I can’t physically force her to eat and the more I push, the more I know that there’ll be a backlash as she gets older and, you know, she’ll completely refuse to eat, you know, possibly at all and she wouldn’t actually, you know, that wouldn’t, we’d just have to increase the PN* and it would change her life chances but it wouldn’t, you know, day to day she’d probably manage because she used to having PN and not many calories, you know. So all of those things and, you know, it’s just so much I think and sort of, it’s almost like every week there’s another thing.

* Total Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.

Joanne was not clear what the future held for her baby. She has many times prepared herself for losing her daughter; looked over the cliff but stepped back from the edge.

I remember obviously lots of thinking that, you know, we really didn’t know what the future held at all, you know, she sort of seemed like she’d been saved I suppose the immediate, but I even remember then and this sort of touches me sometimes, over the years it has but you know, obviously at that point when we were sort of said they- you know they said we had to kind of think about whether we wanted to continue, you know we really thought we were losing her, you know, we really did, the thoughts of what you’re going to do at a funeral really do come into your head even though you shouldn’t perhaps get to that stage they really do. You know, and they obviously just sort of making sure that anybody who wants to come and say bye gets a chance and all of those things. And so when she had this reprieve I suppose, you know, when it was like well no we are continuing I think I still felt very much like yes but she is going to die and I’m going to have to watch her die at some point in my life, you know, she’s never going to outlive me. And so most of this is just prolonging that until that happens, you know, and I suppose at that point I wasn’t thinking it would be a long time I was thinking, you know. I remember thinking you know, she’d probably never go to main stream school, you know, even at that point these things kind of come into your head and so then I had a very emotional reaction, later, years later when she did start main stream school because it was very odd because I had just almost blocked that out like I would never almost allow myself to think past five it, you know, it was you know, the limits of what we were looking at, I mean obviously really you’re focusing on the day to day but there’s still bits of your brain that do, do that leap and, you know.

And, and so I was definitely thinking, you know, this is yeah very, very serious obviously they were saying it’s very serious as well, you know. At that point they said we might be in hospital a year for instance, you know, it was like you know, [husband] was trying to hold down a job I was on maternity leave obviously so I wasn’t worrying about that bit at that point. And yeah just lots of, yeah I suppose yeah it was, it was complicated because it yeah because say that part of me almost felt like but she is going to die it’s just a case of when and perhaps even I prepared myself, you know, even though I hadn’t obviously and I wouldn’t have. And so subsequently sometimes I felt myself almost like the way I’ve explained it is I’ve looked over that cliff I’ve looked over that cliff of losing your child, I’ve seen, you know, down there and then I’ve come back from the edge but I still walk very close to it, you know, so it’s always there almost next to me, I know there’s this sort of yeah one wrong footing and I’m slipping over that edge if you see what I mean. but so I constantly walk with this, with this fear that’s there of losing her and yet because she is doing so well now and, you know, she’s seven and whatever there were obviously times when that fades, you know, to the point where I won’t think about it for months perhaps, you know, and then maybe she’ll have a problem or, you know, I’ll have a concern and then that will bring me back or she’ll have to get admitted to hospital or something and then obviously that returns you back to the much more fearful stage.