Rebekah

Brief Outline: Rebekah had her third daughter via a caesarean. Initially, she seemed a healthy baby, but was diagnosed with intestinal atresia* after she had trouble digesting her food. She had surgery to give her a stoma and then later to re-attach the bowel.

Background: Rebekah is married with three children who are all under the age of 3. She works as a wedding florist and is from New Zealand.

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Rebekah had her third daughter via a caesarean, she is a type 1 diabetic and was suffering from pre-eclampsia (high blood pressure) during her pregnancy. Despite the fact that scans had shown that her daughter had an echogenic bowel (a “bright” bowel on the ultrasound that can sometimes indicate cystic fibrosis), she was born at 34 weeks and initially seemed like a normal, healthy baby. However, she began vomiting a brown liquid after Rebekah breastfed her and was taken as an emergency to a bigger hospital. The next day she went into surgery, which made Rebekah very anxious as she didn’t know how serious it was.

Her daughter had a jejunal atresia*, a blockage in her small bowel. She was fitted with a stoma* and Rebekah was told she would have to have surgery at a later date to re-attach the bowel. Whilst recovering from the second operation to rejoin her intestines, her daughter contracted meningitis at 2 weeks old and was in a high dependency unit for about 65 days. Rebekah and her husband lived an hour away, and drove down to see her every evening which was very tiring. Rebekah rarely got to see the surgeons or doctors as they did their ward rounds in the morning, so she had to call the hospital to get them to answer her questions. She found communication with them difficult and she would sometimes have to wait a few days before the doctors returned her calls. 

During her daughter’s stay in hospital, Rebekah received a lot of support from family and friends, who helped look after her other two children. Eventually, she was able to bring her daughter home aged 3 months. 

Rebekah’s advice to parents is to remember that there’s an end and to “try and not let your mind run away with you because there’s no point in worrying about what hasn’t happened yet”. 

* Intestinal Atresia (Duodenal, Jejunal, Ileal or Colonic Atresia)
The term atresia refers to the situation when a baby is born with a blockage in the intestines. This may be a narrowing or a complete obstruction.  The blockage may be single or multiple. Three areas of the small bowel may be affected: the duodenum, jejunum or the ileum. When the large intestine is blocked, this is known as colonic atresia.

* 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.

Rebekah did manage to see her daughter before her operation. It meant a lot that she was able to see her before her surgery.

So she had the surgery on her own cos I still was in hospital so yeah, she, she had the surgery, actually no, no, I managed to escape that’s right I think I escaped before she had her surgery but we weren’t there when she had her surgery so yeah I, I managed to escape out of hospital and go and see her for a sort of, we only went up for about an hour or two because she was in an incubator and hooked up to all sorts of stuff, there isn’t actually a lot you can do and I’d just had the caesarean so you’re massively uncomfortable I was sitting on a tall swivel chair trying to, you know, hold her hand through a – a, it wasn’t ideal and she didn’t know we were there and, you know, I didn’t, I was sort of worried about her but she was in the best place so there wasn’t a lot I could do really. But I just wanted to see her before she went into that surgery because if anything had happened to her and she didn’t come out I wanted to know that I’d touched her and, cos I’d only held her for sort of an hour before she’d been taken away so.

Everything was perfect with Rebekah’s third daughter until she started vomiting green bile.

So to start with perfect, she was my, she was my earliest baby and yet she was, and she weighed the most and it all seemed so perfect and then within about three hours of her being born she I was breastfeeding her and she sort of vomited a sort of slightly discoloured flem and it was sort of a brownish colour and because they’d picked up on her 20 week scan that she had some sort of prominent loops in her intestine they thought there might be something, they thought it probably wasn’t so then we were just gonna see if she did a normal poo when she was born and take it from there they weren’t concerned, overly concerned. So when she did this sort of stained mucus vomit on me I knew straight away that that wasn’t normal and so I got the midwife in and about ten or fifteen minutes later she started vomiting bilious green, horrendously high amount and she didn’t stop, so she got taken away straight away as soon as she stated doing that. But completely stable so that was her, you know, they weren’t they knew it was an emergency but it wasn’t, you know, all the, her heart everything was fine and her temperature everything, she was really quite stable, she was just really sick [laughs].

Rebekah had a caesarean so couldn’t follow her daughter to the specialist hospital, where she was sent straight into surgery.

So I was, I was fine yeah, you just can’t move cos you can’t feel your legs so I knew what to expect cos I’d had a caesarean twice before and obviously I was, I was worried about her but because I knew she was stable and I knew that it was something to do with her bowel I, you know, I kind of had a heads up already so it wasn’t a complete shock that it was happening cos something had been picked up on the scan. so yeah they just let me know that they would, you know, keeping in touch and let me know what was happening as soon as she got to [city name] which they did and to start with they were going to operate and send her straight into surgery but because she was so stable they didn’t actually do surgery until the next day.

Okay, okay.

But yeah I was, at that point I was, I was worried and I wondered what they were gonna find in the surgery because with her condition it can be really a lot more serious or serious but not so bad so we didn’t, yeah, that was probably the most anxious I was, just before they did that first surgery cos you know what you’re dealing with, as soon as they’ve done it you know what you’re dealing with. But I knew she was stable so that wasn’t a panic.

Rebekah’s daughter was in hospital for weeks; adrenalin and ‘going into overdrive’ got her through. Her husband was more emotional.

It’s been horrendous so not that I was stressed but it’s the tiredness. I’d only had major abdominal surgery like just getting over that on your own is, you know, is great fun but looking after two toddlers as well and then not getting back home till sort of 1 ‘o’ clock in the morning at night after driving sort of constant, well my husband was driving at that stage. It’s exhausting so yeah I lost quite a lot of weight which I was happy with [laughs] but it’s the tiredness cos I think you just go into overdrive and adrenalin does kick in but there was, but if you stop, it’s when you stop that’s then if you sat down it was like actually I am absolutely shagged, yeah pretty bad. But apart from that you do just, you just carry on.

And who, so you and your husband were obviously spending a lot of time together supporting each other.

Yes.

Who else was giving you support in that time?

So everybody, everybody was amazing. So some really close friends who live up the road they were helping with babysitting, my mum my husband’s mum everybody says they’ll, you know, they’ll do whatever you need and it’s really good. But yeah mostly close family and close friends, yeah.

Okay, yeah. And do you feel did you have enough support, enough emotional support in that time?

Yeah I’m not really an emotional support person [laughs]. for me as long as someone’s explaining to me what’s going on I’m fine it’s when people aren’t communicating that’s what will rile me so I’m, I’m pretty good just bumbling along as long as people are explaining things. my husband was a little, he’s a little bit more emotional than me he found things a little bit more difficult like when she had the meningitis and he’s a lot more of a worrier than me. But yeah so I would have to try and explain things clearly to him I think he’s quite good, he sort of looks to his mum when he needs to talk things through as well.

Rebekah explained how nurses were central to communication between parents and doctors.

The nurses are amazing, well actually sometimes you get, so they’re all really good at their jobs but you’ll get nurses who can do their job and then nurses who do their job and are amazing and are very good with people. So yeah they’re fantastic cos they’re like your only link between the doctors and what’s going on there and are looking after your child, you know, the 12 hours at a time. And so they’re fantastic really good and they are really good at sort of showing you what’s going on and explaining things the best they can and they are, they were really I’m not sort of an emotional freaked out person so I didn’t need that kind of support really but I could see with other people that they were very good like that.

What was the nurse that communicated well like, what was, describe to me a good nurse?

The best nurse? Was [name], she was amazing. So she knew her job she explained things very clearly just the way she moved around a room, you know, she wasn’t mucking about so she would and she, so she would move, you know, very quickly she would be sorting this out boom, boom, boom, asking other people if she had nothing to do if they needed anything doing. If a baby was crying even if it wasn’t her baby she’d go over and see what was wrong with it, she would cut you off mid conversation to look after a baby cos that baby was more important than talking to me. She just was very efficient and yeah, you, she was amazing.

But also just good talking to you.

She just knew her job inside out, was, went into great detail explaining stuff very clearly, yeah very amazing lady, yeah.

Rebekah said Facebook was a great way to keep friends and family up to date with her daughter’s progress.

And it’s really awful because everyone’s trying to help and sort of find out what’s going on but you don’t actually have enough time to be texting a 100 people a day, so that’s where Facebook was really good because you give people updates and also we found if we told so I would tell my mum what was going on, [husband] would tell his mum and then they would tell some of the other family members because everybody’s trying to be lovely but they don’t actually realise that actually repeating something a million times or even trying to find the time to text or phone sometimes was just not possible so it was good having someone else that you told and they could pass the information on. But everyone was very understanding they knew that if, they know if the phone wasn’t picked up it was nothing personal [laughs].

Rebekah didn’t feel as though doctors appreciated what a mammoth ask it was to request to meet at 8am. They seemed to assume parents just lived down the road.

So because we’d got the other two kids and they’re not at school or anything we had to sort of work around, and because I couldn’t drive because I had the caesarean and luckily my husband is self-employed so it just turned out that he was working for a relative at the time so we were really lucky that he didn’t actually have to be worrying about work. So we would normally go about our day like we normally did, put the girls in bed at about 7 ‘o’clock and then someone would come and babysit while we drove up to [city name] and we would get to [city name] anywhere between half eight or nine at night then spend a couple of hours with [Baby daughter] and then drive home again.

Gosh exhausting. 

Great fun.

It’s been horrendous so not that I was stressed but it’s the tiredness. I’d only had major abdominal surgery like just getting over that on your own is, you know, is great fun but looking after two toddlers as well and then not getting back home till sort of 1 ‘o’ clock in the morning at night after driving sort of constant, well my husband was driving at that stage. it’s exhausting so yeah I lost quite a lot of weight which I was happy with [laughs] but it’s the tiredness cos I think you just go into overdrive and adrenalin does kick in but there was, but if you stop, it’s when you stop that’s then if you sat down it was like actually I am absolutely shagged, yeah pretty bad. But apart from that you do just, you just carry on.

And you know, when, when a doctor or a nurse says oh can you get here for 8 ‘o’ clock tomorrow like the scrabble and the trying to organise everything at the other end because it’s, it’s not just, you know, a taxi ride or a drive away because you live down the road it’s pretty mammoth. So, so yeah it might sound like a just you make sure your here for 8 ‘o’ clock for the doctor when in reality that’s really a big mission sometimes.

Do you think they understood that?

[Sigh] I don’t know, they’re so busy Lisa that they didn’t understand [laughs] no I don’t, I don’t know, I don’t know, I didn’t even know if the doctors knew that I didn’t live in [city name], you know, I don’t even know if they knew that. But no, I made sure I was there the morning before the surgery.

Rebekah’s daughter had a jejunal atresia and the surgeon said he would have to wait and see how much of her intestine would need to be removed.

So the surgeon rang me to talk through what they might find you know, what would be, you know, what would be worse what they do about it and so yeah she went into the surgery and what they did find wasn’t so bad for her kind of condition so she could have an extremely short gut, and but luckily for her she had quite a lot of normal intestine under where her blockage was so it wasn’t actually a worst case scenario which was.

So what was her condition?

It was a Digital Atresia, so she had a blockage in the very top of the, so really quite high up where the small intestine starts. yeah.

And so that surgery was to unblock that in the first instance?

Yeah so it was to cut, cut that out because of course you can’t eat anything if it can’t go down and then because it’s quite make the surgery because of where the blockage is you could have quite a large, it can be quite stretched where the blockage was and then you’ve got your normal intestine underneath, so joining the two bits back together once you cut the bad bit out can be quite difficult. So they gave her a stoma and then she would have to have surgery again to close that stoma and re-join her intestines at a later date.

And was that, that sounds like quite a major operation.

Yeah.

For a 2 day old baby, that’s only 34 hours old. And had you spoken to the surgeon before?

Yeah.

And tell me again what did him sort of outline, I guess he didn’t know what they were gonna find at that point.

So they were pretty sure there was a blockage because they had given her an x-ray and yeah, weren’t sure what they were gonna find and I’m pretty sure they explained to me that she might have a stoma once she came out but it was, it was pretty much we’ll just have to wait and see and go and see what we can find. but they were quite pleased so when, when they rang me after the surgery they were, you know, they were quite happy because there was quite a lot of normal intestine underneath her blockage so it wasn’t the worst, worst thing, not the worst everything can be dealt with but it wasn’t you know, a really bad, bad case.

Rebekah was furious because a miscommunication meant that she waited hours after her daughter’s surgery to be reassured she was OK.

So someone did ring me and tell me she’s out of surgery. She’s fine it went well, we’ll be going back to the hospital. Because the surgery’s done at a separate hospital to the one she was in and once she’s back we’ll let you know and you can come and see her because she might be ventilated, you know, she sort of needs to come round and is, you know, there’s, you know, if you’re not there there’s nothing you can do, I knew she was okay. So I went, sort of walked round [city name] shopping just mooching around, it was summer so it was quite nice to just go and walk around. And it got to 7 ‘o’ clock that night and I’d actually, I was in the hospital lobby when I saw her being wheeled through the unit, and I thought right she’s back they’re gonna phone me soon, you know, let me know what’s happening and it got to 7 ‘o’ clock that evening and I still hadn’t had a phone call. So you’re thinking right is there something wrong, you know, surely they’re going to be in touch and in the end I phoned them and she was back and she’d been fine it was just miscommunication and no-one had phoned me. So by then it was nurses change over so I still couldn’t go up there because they didn’t like parents in there, in the rooms when they were doing the nurses change overs and then it was doctors change over. So by now it’s like I don’t know half past 8 at night and by that stage I was so furious because there’d been miscommunication and is my daughter dying? Is she fine? Is there something complicated going on? But just hadn’t heard from anybody. 

So I rang my mum and just asked her if she’d completely blast them out cos I was so pissed off and she did she rang them to ask what was going on and they said they were really sorry and I said that’s not good enough I’m really hacked off. And so I went up eventually and unfortunately the nurse looking after her wasn’t, was foreign which is absolutely fine I have nothing against foreigners but when you need to ask someone about surgical procedures or what might have happened, communication is so vital so when you’re speaking in broken English to someone it’s really difficult to know what’s going on. So that was all a little bit stressful yeah I was not happy about the situation after she came out of surgery.

Rebekah tried to keep things as normal as possible for her two older daughters, who were only toddlers. But they were still very unsettled at bedtime when she first came home from hospital.

So it was, we tried to keep everything as normal as possible.

Yeah.

So for them it was a little bit sad because they’d been told oh the baby’s coming home tomorrow because of course I was told I was having the caesarean and they were so excited and then she just got whisked away straight away. So we took them up there as soon as we could after she’d had her surgery and of course they could only touch her they couldn’t hold her and they were in intensive care like there was cords and stuff going everywhere so they were literally in there for five minutes because they were just a nightmare. But they so we tried to keep everything as normal as possible so, you know, going to bed, so they didn’t actually realise that we’d left the house because they were asleep. But we noticed that it did impact, I think it had impacted on them afterwards because after, just before [3rd daughter] came home and you know, and probably the first month after [3rd daughter] was home them going to bed, they would normally go to bed and go to sleep quite quickly, they were a nightmare their whole, they just, they just really started playing up going to bed and I’m sure it was to do with being really unsettled about what had been going on. But yeah we took them to see her as much as we would normally go up on Sunday with them because it was my husband and I we could control them in the unit. But, but they weren’t that interested. They liked to go and see her and they’d used to tell me just to put [3rd daughter] in the van and take her home. But yeah we’d talk about it and they understood that she wasn’t very well and, but yeah it was just the going to bed thing that, apart from that they didn’t really, behaviour wasn’t bad or anything, didn’t really see a massive, massive change or anything.

Rebekah was driving up to see her daughter in hospital in her local city every evening, which she thought cost about £50 for a round trip. She felt others who couldn’t afford that wouldn’t be able to see their baby.

And you’re not working at the moment so you didn’t have to fit that in?

Oh thank God I do not know how people do it, I do not know, and also, you know, we are not struggling for money because it was costing me to go up, well it was costing us a lot in fuel to go up there and if I ever did catch the train I would the get a taxi so I’d catch the train get a taxi then have to get the taxi back, get a train back, grab something to eat while I was up there, it was like a £50 round trip. Now we’re very lucky that we didn’t have to worry about that, and people were very generous actually they gave us money to help us with petrol and stuff but any other mothers who couldn’t stay with their child at the unit in [city name] who didn’t have money they just wouldn’t be able to see their child it would be horrendous, really awful so we were really lucky like that.

Communication was absolutely vital to Rebekah when her daughter was in hospital.

Just communication that’s my only thing, you know, cos if you’re in the dark that’s when people would worry or, you know, as long as you, you know, either good or bad, what was going on and a lot of the things you ask them they don’t know the answer because it’s a time will tell kind of answer, but so long as someone tells you the time will tell sort of answer you’ve got an answer. So yeah communication’s the major thing that I felt let down with. But apart from that, I mean they’re amazing, the nurses are amazing what everyone does is amazing and we’re extremely lucky but yeah just communication really.

Rebekah was very frustrated at the poor communication while her daughter was in hospital.

Yeah I got really cheesed off.

Tell me a little bit about that.

So it got to a point where yeah they were, I needed to speak to a doctor and I could not, no-one would communicate with me. So the nurses would pass on the message that I would wanna speak to a doctor and then I would get told that a doctor was gonna phone and then I would wait all day and then the next day would come and till I wouldn’t get a phone call and in the end I got so irate [laughs]. I knew that I couldn’t actually phone them because I was just gonna explode so I got my mum to phone and she made it pretty clear that I was pretty unhappy and I just needed to speak to someone. Cos my daughter’s in intensive care I just need to know what’s going on just a few simple questions and then at that point someone did phone me and then still even after that phone call there was still communication problems. It was, we were just always, we were always told that everyone was so very busy, which is fine but sometimes if you’re not in the hospital and you’re far away you might just need a phone call or even, yeah even something written down that you could read. Because they have yellow notes while they’re in hospital and you could see the nurses filling in information, the doctors and we weren’t allowed to read those notes.

So someone did ring me and tell me she’s out of surgery she’s fine it went well we’ll be going back to the hospital because the surgery’s done at a separate hospital to the one she was in and once she’s back we’ll let you know and you can come and see her because she might be ventilated, you know, she sort of needs to come round and is, you know, there’s, you know, if you’re not there there’s nothing you can do, I knew she was okay. So I went, sort of walked round [city name] shopping just mooching around, it was summer so it was quite nice to just go and walk around. and it got to 7 ‘o’ clock that night and I’d actually, I was in the hospital lobby when I saw her being wheeled through the unit, and I thought right she’s back they’re gonna phone me soon, you know, let me know what’s happening and it got to 7 ‘o’ clock that evening and I still hadn’t had a phone call. So you’re thinking right is there something wrong, you know, surely they’re going to be in touch and in the end I phoned them and she was back and she’d been fine it was just miscommunication and no-one had phoned me. So by then it was nurses change over so I still couldn’t go up there because they didn’t like parents in there, in the rooms when they were doing the nurses change overs and then it was doctors change over, so by now it’s like I don’t know half past 8 at night and by that stage I was so furious because there’d been miscommunication and is my daughter dying is she fine, is there something complicated going on, but just hadn’t heard from anybody. 

So I rang my mum and just asked her if she’d completely blast them out cos I was so pissed off and she did she rang them to ask what was going on and they said they were really sorry and I said that’s not good enough I’m really hacked off. And so I went up eventually and unfortunately the nurse looking after her wasn’t, was foreign which is absolutely fine I have nothing against foreigners but when you need to ask someone about surgical procedures or what might have happened, communication is so vital so when you’re speaking in broken English to someone it’s really difficult to know what’s going on. So that was all a little bit stressful yeah I was not happy about the situation after she came out of surgery.

Rebekah would have liked more information, and wished she had had a conversation with the surgeon who could have given her some medical terms that she could then go and look up.

And you said that you didn’t do any googling or anything you resisted the temptation to Google? Did you feel that you’ve had enough information through this period?

Not really I don’t know, I, this is why I want the medical terms from doctors so I could look it up myself yeah I don’t know I think it would have been good but the surgeon I spoke to just before her surgery and after was very, very good on the phone she went through a lot of things, I asked her a lot of questions and she did explain things very clearly and in great detail, which is what I need just to, you know, to sort my head out. but apart from that, no doctor or surgeon sat down in person and explained to us what was happening or going on so, unless you went on the internet and read things and actually because I’d been on the internet and read things I did come up with questions to ask them so yeah. I mean surgery’s pretty major within the first day of your life I think it would be good if, if a doctor or a surgeon actually sat down with you and talked you through some things and, you know, yes it’s not easy cos we I’ve here but we would have dropped everything to go up if someone had said right got an appointment to speak to the doctor at 10 ‘o’ clock it will only be for 20 minutes but, you know, you can fire anything at them but that didn’t happen.

Rebekah said that is important not to let your mind run away with you. Stay calm, it won’t last forever.

That there’s an end, there’s an end and to try not to let your mind run away with you because there’s no point worrying about something that hasn’t happened yet, it might be a potential but until it happens don’t fester on it and worry about it, wait until it does happen and if it does then you deal with it when it does. It’s the only thing I think if you let your mind run away with you, there’s nothing you can do about it anyway, you’re gonna end up at the same point so just to try and stay really calm and sometimes it might just be deal with each hour at a time, and if you get past that first hour you get into the next and then before you know it it’s the next day so you’re a day down. It’s, yeah I think that’s the only thing really, and it won’t last forever. You know, it actually feels like she was never there now, it honestly feels like that and I knew it would and therefore I just keep thinking, you know, it doesn’t feel like it ever happened. But while you’re in it it’s just a bit like ahhhhhh, but you know it’s gonna end, you know I think that would be it.