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Parents’ experiences of neonatal surgery

Finances and working life when a baby has neonatal surgery

Parents described how having a baby who needed surgery sometimes had a big impact on their finances and working lives, both when their baby was still in hospital, and after they came home.

Financial impact

“It’s expensive being in hospital. Spend a week in hospital and essentially you’ve spent a few hundred pounds.” Mike

Several parents talked about the unexpected costs of having their baby in hospital for long periods of time. As well as paying bills at home, there were the extra costs of petrol, parking and hospital food. As Mike and Fiona said, “you have to pay the bills and everything is carrying on as normal, but nothing is normal.” 

Many parents were lucky enough to be provided with charity-funded hospital accommodation that meant they could stay near their baby. But those who were living at home described the extra expense of petrol, train, bus and taxi fares and hospital parking. Several parents were in debt afterwards and others relied on support from family and friends.
 

Luke and Angie were shocked by how expensive parking and eating at the hospital was.

Luke and Angie were shocked by how expensive parking and eating at the hospital was.

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Luke: And just the cost, I mean the cost of parking and eating at the hospital and all that I mean we were on, at the time I wasn’t working and we were on nothing and, you know, we had some friends who actually did a whip around and, you know, if we hadn’t have had those friends do that we would have been in a situation where we were saying we can’t afford to go backwards and forwards from the hospital we can’t, you know, it was in a situation where on some of the occasions, prior to some friends doing that, it was kind of I was saying to Angie ‘Oh would you like me to get some food for you from the canteen or something?’ and she was like ‘Are you going to have something?’ and I was like ‘Oh no not feeling hungry right now,’ because we didn’t have enough money for us both to eat, you know, it was really…

Angie: I mean it’s just ridiculously expensive.

The canteen, the prices or just the fact that you’re.

Luke: Just not at home, I mean at home we live a ridiculously frugal life, you know, on all of us eating we probably spend £40 a week.

Angie: I mean the hospital, the hospital were good we had we had canteen passes so.

Luke: You got staff price.

Angie: Staff price so it was cheaper and with the parking it was half price parking because they said that a parent is integral to the care of the child so you got half price on the parking but that’s still, that’s still a lot of money each day. And just you know, even at half price at the canteen that’s kind of £3 a meal for breakfast, lunch and dinner and you know that well, that’s a lot more than what you would be paying at home.

Luke: I think, you know, and where other friends have gone into hospital with kids and all the rest of it now and we’ve been involved in raising money for it you kind of, you immediately go actually having a kid in hospital I think probably costs you around a £100 a week in the difference it makes to your finance. I mean it’s that, it’s those kind of figures which if you haven’t got it, it’s just…
 

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.

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.

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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.
Disability benefits

Some parents were eligible to claim disability benefits, such as Disability Living Allowance (DLA). But even if they were able to claim for help, it didn’t necessarily cover all the costs. Mike said, “You don’t really get help for as long as you need it.” Some parents did not realise they could apply for benefits, and so lost out on hundreds or thousands of pounds worth of help when they most needed it.
 

Jason and Lucy didn’t know they were eligible for disability living allowance when their son was ill, and estimated they missed out on almost £20,000 of support.

Jason and Lucy didn’t know they were eligible for disability living allowance when their son was ill, and estimated they missed out on almost £20,000 of support.

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Lucy: Yeah. And we didn’t know about being able to choose our own supplier either when we left the hospital we were, they gave us the details of a delivery company the supplier and until he had his second stoma we didn’t know that we could choose our own one, we were having loads of trouble with the supplier, they were throwing our supplies over the back gate when it was raining so the boxes were getting wet and I was calling them and I was like ‘I can’t use stoma bags that have been outside in the rain you’re gonna have to re-send them’ and we had loads of trouble but just knowing things like that and one of the other things that we didn’t know about until [son] had his stoma was that we could have claimed disability. And that’s something we try and tell as many people as possible about.

Lucy: We very nearly lost the house didn’t we?

Jason: Yeah we did it was touch and go.

Lucy: We pretty much lived off handouts from our friends that gave us money so that we didn’t lose our house and if we had known about that we could have had that support it would have just kind of given us a little bit of help but we had no idea and that comes back to the fact that we were in [local city] and we were dealt with [city] because when we got discharged from hospital when [son] had when he, after he was born so when he was two weeks old when we came back we never had a health visitor because [son] had complex medical needs we had someone call up, a health visitor call up but she was only covering the area temporarily and she left a rather amusing voice mail didn’t she which we still giggle about now.

Jason: Oh yeah.

Lucy: The voice mail was ‘I’ve been asked to call you, I don’t know why if you wanna call me back’ and we were like ‘Because I’ve had a baby that’s why’ [laughs] and she came round once didn’t she and pretty much just said, ‘I don’t deal with this area you won’t be seeing me again if you’ve got any problems go back to [city]’ and that was that. So until he had his stoma and we started looking at support groups it wasn’t until then that we were like ‘Oh all these people are like, you know, claiming disability living is that something we could do?’ and they were like ‘Yeah you could have been claiming it since he was born’ and then we looked into it and we were able to claim it and yeah it would have kind of made a massive difference.

Jason: That would have done, yeah without a doubt, hey ho we got through it.
Impact on maternity leave

Some mothers talked about how their baby’s early arrival had knock-on effects on their maternity leave. Victoria’s son arrived 15 weeks early and so she lost several months of full time pay, as well as spending most of her maternity leave visiting him in intensive care in hospital after he developed necrotising enterocolitis (NEC)*.
 

Victoria’s son was born prematurely and developed necrotising enterocolitis (NEC). Stopping work early meant she lost 4 months full time wage and much of her maternity leave was spent in intensive care.

Victoria’s son was born prematurely and developed necrotising enterocolitis (NEC). Stopping work early meant she lost 4 months full time wage and much of her maternity leave was spent in intensive care.

Age at interview: 31
Age at diagnosis: 31
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But irrelevant to that it’s not about the money but I don’t think people realise how it affects everything. You know, I mean I lost pretty much four months full time wage so that has a major affects when you’re getting ready to have a baby- four months is a lot of full time wage to lose because you’re planning, all your planning times gone, you know, I mean it was lucky that we had certain bits but, you know, and then we just put everybody on stop, cos every time we seemed to do something or buy something Bobby took a turn for the worse so then I barred anybody from buying anything, you know, and, you know, we just didn’t have anything because we just, you know, we bought a bit at a time but it does, it does mount up especially when you’re not getting a full time wage and I do think that that should change. I do think, for, because there is benefits you can get out there but because me and [Partner] both work full time we’re not entitled to any, so, you know, I mean we do, we do get some money now for Bobby because of certain things that’s up with Bobby but, you know, that’s only because of the fact Bobby has complex needs but not because we get any other, you know because we earn too much which I think is, realistically we don’t because I’m on maternity leave so I only get bog standard SMP so.

Yes I was, I had to go on maternity leave the day after I had Bobby which was difficult, I know you’re probably aware that there’s a big petition at the moment to try and end try and increase the amount of leave that mums have and get paid longer for maternity because theoretically Bobby came home in August and I’ve got to start thinking about going back to work in January so that’s four months with my baby who was born 14 weeks early and so, you know, kind of five or six months of my maternity leave was spent in hospital so, you know, that’s no time, it’s not enough time. You know, cos my days were spent, not every day is spent having quality lovely time, going to baby groups going out for walks spending family time with [Partner], some of that’s spent in hospital, you know, and Bobby has between, between two and five appointments a week and he has done ever since he’s come home. This week he had 1, 2, 3, 4 appointments, we only cancelled a couple because of circumstances, next week Bobby’s got three or four appointments and you know, its’s kind of like that every week really, you know, we have physio appointments, we have dietician appointments we go and see Bobby’s surgical team, we go and see Bobby’s consultant his neo-natal consultant. We’re going for a cardiology appointment, you know, we‘re going to [Women and children’s hospital] we’re going to [smaller hospital], we’re going to [City] hospital, you know, it’s full on.
Impact on working life while baby is in hospital

Coping with their baby being seriously ill in hospital, while still needing to work, was a real challenge. While mothers were often on maternity leave, fathers had to juggle shorter periods off with paternity and compassionate leave. Louise described how her husband had to drop everything during the period when their son was in hospital (with congenital diaphragmatic hernia*), and then did shorter days for a while. Nicky said her husband’s work were very supportive and let him work from home so he could juggle hospital visits to see his son. Matt was also supported by his employer to work at home while his son waited for, and recovered from, his operation for Hirchsprung’s disease*. Ally’s husband works for the prison service and they were very supportive giving him extra leave while his son was in hospital in another city. But not all parents were so well supported by their employers. Zoe’s partner was not given compassionate leave, so had to use all his holiday entitlement up to be with his partner and daughter in hospital, which was a three hour drive from home. Julie’s partner was self-employed and didn’t get paid when he didn’t work, so they had to rely on credit cards to pay the bills.
 

Emma has had to go back to work full time, in part to cover the debts run up while her son was in hospital.

Emma has had to go back to work full time, in part to cover the debts run up while her son was in hospital.

Age at interview: 30
Age at diagnosis: 28
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It’s hard, I don’t feel like I can do it all at the moment I said to my husband I don’t feel like I’m, I feel like I’m constantly chasing myself. I wish I didn’t have to go full back, back full time but unfortunately life is life, do you know what I mean, no-one can afford now to live on one salary and, you know, we spend a lot of money getting [son] to and from the hospital and while we’re in there we’re not on any benefits and don’t get any support on that side of things. So you’ve got to work in order to pay for it, I mean we ended up in debt actually when [son] was in having his cardiac surgery because I was on maternity pay at £139 a week or something when, so my child care through the year I still had to run my house I still had to pay for my car, I’m living off hospital food, you know, it’s all pay, there just wasn’t enough money coming in to cover it all. So yeah I have to go back full time so that’s hard and it’s hard leaving [son] with someone I have to leave him with child minder and it’s the trust, that’s hard. I don’t feel like I’ve got it under control yet, still very much up in the air, there’s never, it’s never all organised but it probably is as organised as I can get it right now.

And is your husband working full time?

He is yeah and he works shifts so we have to go round his shifts.

Yeah okay. And has his work been supportive through everything or?

Yeah they have actually, they’ve been really good he kind of takes it so when we’re off longer term they kind of go right we’ll give you half as compassionate leave and put some of your holidays in to kind of counterbalance, which is hard at times because that means we had no holidays left to do anything when the kids were well. But I get it, by the time different periods off they can’t give everything compassionate but apart from that yeah they’ve been really good, you know, when [son]’s needed to go in or I need to get away an hour early, I’m making up another time to take him to his appointment, they’ve been really good with that.

Okay, okay. But it has had a difficult impact on costs and the logistics?

Yeah.

Yeah.

Yeah, yeah cost, it only, it sounds awful to say but I don’t know how to really say it properly but, when you’re on benefits when you have a baby your benefits don’t drop so you’re no worse off, but when you’re not on any benefits and you go on maternity pay it’s a big drop and you’ve still got all your outgoings but then you’ve got an outgoing on top of that, that you weren’t expecting or that’s difficult that you can’t not pay it’s a spiral and there’s no support for that which is hard because you’ve suddenly got to find this money, we had to take out a loan which was awful, I don’t have a credit card I don’t like taking out any debts it’s not us, I like to live within my means, but the money but also we only got married the year before so all our savings had gone. 

And then suddenly this came round and we hadn’t had time to save on top of it and it’s, it’s a lot to live at the hospital especially when I had to still, I could not pay for my childminder to have my little boy because I wanted him kept in the routine and I needed him to know who he’s going to so, you know, even if [son] wasn’t there he was kept stable because he was struggling a little bit my other littler boy, he was having like night terrors and waking up screaming for mummy and where was my mummy and she’s off and so I needed him kept in the routine so that he wasn’t struggling so much. So yeah it was, it was hard, it was hard, and we’ve only just, just now starting to get a little bit back on our feet.
Longer term impact on work

Many parents described how their baby’s health condition and surgery had long lasting impact on their working lives. Some mothers had supportive employers, and were able to take extended maternity leave. But several had either given up work, taken redundancy or reduced their hours and role to be able to look after their child at home. Clare described how hard it was to convince her employer that she needed the flexibility to be able to drop everything if nursery called and her son needed her. Jane hadn’t been able to put money into her pension for years.
 

Their son’s Hirschsprung’s disease has had a long-lasting effect on both James and Clare’s working lives.

Their son’s Hirschsprung’s disease has had a long-lasting effect on both James and Clare’s working lives.

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I know you’re working lives are mobile but how would you say the experience of [son] being ill and needing surgery has impacted on your working lives?

James: Well I think the organisation.

Clare: Quite a lot for me in the early days, I remember having to speak to my boss about it and trying to explain that, and particularly because we had that prolonged period where we didn’t really have a diagnosis and it just seemed like, you know, we were just being treated for just constipation, you know, so any time that I needed off, felt like a real battle and trying to sort of get taken seriously. But then even after the operation, it always felt like I was having to persuade my boss that this was serious, you know, and if I needed, and there’s one particularly long period of time, I think I must have been in hospital with him for sort of three, and a half weeks or something I don’t know whether that was immediately post-op or one of his starts with enterocolitis but we kind of had the option to take two weeks sick leave with a child, but then if you need any more than that that’s when it sort of starts to get difficult. And I remember my boss sitting me down and basically negotiating me out of using any further sick leave and saying that I needed to take normal leave and since then it’s made me incredibly conscious of keeping back leave just, always having just a few days spare a year which is really, you know, and especially now that we’ve got school holidays and stuff to contend with as well. I’m always, I’m always really nervous of using up leave on holidays and things because I’m always worried that I’m gonna need to take that time off work and that sick leave isn’t gonna cover it. 

I’ve subsequently found out that I could have had, which is daft for somebody who works in HR but that I could have had a further two weeks additional compassionate leave, okay it would have needed signing off by somebody, you know, further up but, but I would have had that option. But yeah I don’t, I kind of felt rail roaded and, and in terms of if I’ve, you know, moved job or been promoted I’ve always had to go straight into my line manager and say, this is my scenario at home so you know, you know, I might get a call from the nursery or from school and I will have to drop everything and go. Hopefully now we’re kind of past the point of really having to worry about that but, you know, it’s still in the back of my mind. And also I have to say to them, you know, we have regular hospital checks with him and, you know, I will wherever possible try and let you know in advance but it does always feel like it’s something I have to cover off straight away, I can’t, I can’t kind of leave it and I can’t, I sort of can’t keep my private life private.

That must be tough.

Clare: Yeah, it’s a bit odd, doesn’t feel entirely natural.

Jason: Yeah I mean when [son] was poorly in the lead up to the surgery I did take some time off work, it was only two weeks like when he was in hospital and that was okay, that was sort of reasonably received. But then there came a point when I had to actually articulate when I was supposed to be going overseas, and I had to articulate what the condition was for the person who was sending me overseas to look it up and then make a decision whether what I was saying was fair. And I kind of felt I kind of felt a bit aggrieved by that, and it was almost like when I was saying, you know, I’m sure there are people who would use it to get out of doing one thing or another but yeah that felt a bit unfair you know, you go cap in hand you say ‘Look I’m sorry I know I’m meant to be going away I can’t this is not the right time’ you kind of hope they say, ‘You know what, Jason, got it, we’ll cut off the background later but yeah, just go and do what you need to do,’ and that wasn’t the case so that was a bit galling. But since then the different roles I’ve been in on one occasion I’ve been master of my own destiny, so actually taking take time off when I like to and talk to my deputy and say I’m going run the gaff its fine. But actually since then it’s been, it’s been okay, you know, I do, like Clare had to sit there and say look, this is the scenario you know, it won’t be a question of Clare will cover it all because that’s not gonna happen, yeah historically that may have been the case, but we’ve worked out in time that’s not fair and not right so it might be that I have to go do X and Y and so you need to be prepared for that. I have to say my options has been pretty good, you know, that’s been quite positive from my perspective, not so for you necessarily but…

Clare: I think, I think we’ve, we’ve got better at keeping work, our respective, work informed that of what the situation is and what could happen and we’ve found ways of kind of talking it and it raising it whatever and generally the kind of lesson has been to raise it as early as possibly really but they just know and then you don’t need to try and have that argument or discussion about it later which is what I got caught out with really badly early on. 
Donna’s son was diagnosed with Hirschsprung’s disease. She took voluntary redundancy because, “we didn’t know where he’s gonna be in a year, we didn’t know”. She was touched that at her leaving drinks she found out her colleagues had all researched her son’s condition online. Joe’s third daughter had exomphalos* and complications. She took extended maternity leave from her job in pre-school management, and was going to take a step down from her managerial role when she went back. Sally-Anne and Simon’s son was 13 when they spoke to us. His health has severely affected their working lives. Sally-Anne would have loved to go back to work as a nursery nurse, but the costs of looking after her son when he was tube fed as a baby meant that it didn’t make economic sense. It was a financial and practical decision. Her husband Simon has tried employment and self-employment as a builder, but similarly has found employers could not tolerate (or cope with) the uncertainty of what emergency care their son might need.
 

Jane’s daughter had exomphalos. The experience impacted massively on her working life. But has had a silver lining.

Jane’s daughter had exomphalos. The experience impacted massively on her working life. But has had a silver lining.

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You’ve touched on this a little bit, but how did the experience impact on your working life?

Massively. Massively. I was working as, I was marketing manager for an art centre and I actually gave that job up just before I got pregnant because of the impact it was going to, about to have on my elder child because they wouldn’t let me collect her from school. And I just didn’t think that she could cope with going to after school clubs and stuff just because of how she was at the time. Looking at her now, it seems unbelievable but, you know, that was true at the time and but I was working freelance and my plan was never to be, you know, a stay at home mum or anything like that. It just wasn’t not, not what I am and but there was a point at which I just couldn’t do a job and I thought, gosh, am I ever going to work again because I just couldn’t realistically. But I mean I used to, I remember, at some point, saying to my husband, before he started working in [country abroad], “Right, we would have to do everything right. If I get a job, you would have to be the main contact for any problems with the school because I would just get sacked from any job, you know, because I haven’t got, you know, I haven’t built up that goodwill. So if I go and get a job, you need to be that, the main contact”. But, of course, that’s not possible in [country abroad] and him being hundreds of miles away [laughs]. And yeah, I think it, yeah, it was just that thing of not being able to be in a job working with teams necessarily because how can you do that if you can’t be relied on.

So I actually did, that was when I did transcription because it was the only thing I could think of that was kind of, I could accept it. If I knew my daughter was well, I could say, “Yes, I can do the work.” And I knew that if she then had to go into hospital, and this was, I started doing that after the period where she was, I mean it was once they’d got things under control and we knew what was happening. So I did that for about a year I think. You know, just doing qualitative research stuff just because I just wanted to get some money in and, and it made me feel better that I was doing something.

Yes.

And I’m a fantastic transcriber [laughs] I don’t do it anymore but I’m fantastic. But yes, so yeah so it, yeah, it has had a big impact and kind of continues to really because well, I suppose between my husband’s situation with work and my daughter’s tendency to get ill, she had her first ever hundred per cent attendance for school last term. So.

And she’s how old now?

She’s now eight. So that’s been quite a long period and then, so yeah, no, it has, it has had a massive impact. But it’s also allowed me to, you know, I’ve done three different qualifications. I’m now taking an MA, you know. I kind of think, you know, and I went into work that I probably wouldn’t have looked at before. So, in a way, it’s given me a weird kind of freedom to explore things [laughs]. But yeah, I mean I think it will it’ll continue to impact on me financially because you see I don’t, I haven’t had a pension for years, things like that. So and also I kind of miss teamwork really. I’m not a natural working from home, not in a job that doesn’t have an awful lot of contact with people other than e-mail, that’s not really my natural my natural environment. But it was, it’s something that’s developed because it’s the only thing I could do.
*Footnote definitions:

Stoma 
Surgeons may divide the bowel in an operation and bring the two ends out onto 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.

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. 

Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

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 normally.

Exomphalos 
An abdominal wall defect that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.
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