Luke & Angie

Brief Outline: Luke and his wife Angie’s third child was born at home. After 24 hours he was vomiting and had not passed meconium. They took him to hospital where he was diagnosed with Hirschsprung’s disease*. He had bowel surgery at 2 ½ months and is now doing well.

Background: Luke is 40 and a design consultant. Angie 39 and is self-employed, and home schooling their children. They are married with two daughters and one son.

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Luke and his wife Angie were thrilled when their third child, a boy, was born at home. He seemed to be well at first but over the first 24 hours they became increasingly concerned about him. He had not passed his meconium and was vomiting bile. When he vomited green bile at around 36 hours old, they decided it was time to take him to hospital. They initially went into their local hospital but were soon transferred to a more specialist centre because he needed to be in neonatal intensive care (NICU)* while doctors ran tests.

Their son was diagnosed with Hirschprung’s disease*, and Angie and Luke were told that he would need to be allowed to grow for 2-3 months before he was strong enough for the operation. He stayed in hospital for a week while the tests were run, and they were taught how to perform his twice-daily bowel washouts. Then Luke and Angie were allowed to take him home until it was time for his operation. While he was at home they received regular visits from the health visitor and had to call into NICU regularly with his weight progress, and go for check-ups. At first their son had some difficulty establishing breastfeeding, but a consultation with a lactation expert helped them overcome these difficulties.

When he was 2 ½ months old, their son had put on enough weight to be able to have the operation. It was 5 hours long, but a success. Only 10cm of bowel needed to be removed. Their son was 19 months old at the time of the interview and progressing very well.

* 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.

*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.

Luke and Angie said the washouts did take a long time, and took over their lives. But they were far preferable to him being in hospital.

Angie: We’d get up and we’d get the kids breakfasted and then we would do his wash out and the wash out can take anywhere from about 20 minutes to an hour and, and we’re home educating our children so, you know, and so they were home so it wasn’t a case of getting them off to school and then doing it they were home. And, you know, we did a lot of stuff in between wash outs but I’ll be honest we, we spoke very clearly to them and said this is really important for him we both need to be able to concentrate on this procedure while we’re doing it and we need to not have any distractions and basically they watched some TV while we did his wash out and they were great, you know, the kids were fantastic, they were, you know, sort of not even two, no not even three and five.

Luke: It does kind of take over your day, you’re doing that, you’re doing that twice a day.

Angie: You do a wash out at 10:00 and one at 6:00.

Luke: And sometimes even three times a day if he was particularly distended, you know.

Angie: Yes it’s an hour and it could be an hour each time which is a lot of, a big chunk out of a day. And, you know, there were times when.

Luke: You can’t go anywhere really.

Angie: No you couldn’t, couldn’t go anywhere really but there were times when we were, cos we were job hunting for Luke and it’s just like well what job can he take, you know, what job can you take where he can be home, you know, we can shift the wash outs a little bit but we couldn’t shift them massively from the times that they were set up, so you know, what job can he do between kind of 11 ‘o’ clock when one wash out finishes and 6 ‘o’ clock when the next one starts.

Did it need two of you to do them?

Angie: Yeah.

Luke: Yeah absolutely it’s definitely two man job.

Angie: It is yeah it’s definitely yeah definitely a two person job. But yeah so.

Luke: But we did, I mean we did get to a stage of where we just started taking a kit in the car with us so we’d just wash him out whether we had to be. So we’d go out to a friend’s house and say can we borrow your bathroom for 45 minutes, you know.

Angie: Yeah I mean we, I think doing it that way was way preferable to him being in hospital I absolutely, I mean it was a pain.

Luke: But it’s not, it’s not an easy thing, it had to be said, I’m not saying it’s an easy thing.

Angie: No it’s not but then other kids have to be tube fed and, you know.

Luke: Yeah exactly yeah.

Angie: But actually his quality of life was so, you know, I just remember going out to places with people and they were saying but, you know, can you imagine actually if you hadn’t made them teach you he would be in a hospital right now and here he is and he’s on a picnic and, you know, and he’s sitting around and he’s having cuddles with people and he’s seeing his, you know sisters and we’re, you know, we’re just able to be a family. And that, it was worth it, it was definitely worth it.

Luke had to battle with staff to be allowed to stay by his son’s side. But it was very important to him that his son had someone with him during a traumatic time.

Luke: Yes and just, you know, very much so they’re saying, you know, we need to have access to him, which I completely understand and they want to be in a situation where they can rush in and do what they need to and, you know, I completely support that. but also I’m, I believe that physical contact is really important particularly when you have gone from an environment where you’re actually being carried inside someone and can hear their heartbeat to being put into a very sterile environment and, you know, so yes we did, we did prevail. But he was then yes he was then moved to NICU and NICU was very much set up as the babies are in here, the parents are not and parents will come in and maybe visit for an hour at set times and, you know, kind of they got him set up and they said okay you can kind of go home now. It’s like well no we’ll be staying here with our baby they were like well you can’t sleep here. But obviously we hadn’t slept at that stage since and initially I stood and eventually they got a seat.

And why was that so important to you?

Luke: I think a whole number of reasons really I think...

Angie: Why was it important that we were there with Isaac?

Yes and why, why was it important not to leave him at all?

Luke: First of all our starting point is attachment parenting is our start, so our parenting style is one where we are with our kids and support them. But I think, you know when you are going through the most traumatic stuff imaginable I think you have a right to have someone with you and I as an adult if I’m going through something really hard want to have someone, want to have someone with me and so for a child how much more important. And if he died which was a possibility, I wanted, I needed to be able to say at the end of that that I had been there for him that if I could do nothing else but watch over him that I had done so.

Do you think the staff understood that?

Luke: No. 

Luke and Angie said the hospital were very supportive at allowing their two older daughter to visit their son when he was in hospital with Hirschsrung’s disease.

Angie: What I will say though is that actually both NICU and the surgical ward were really good about our other children visiting Isaac.

Luke: Yeah they were brilliant.

Angie: They were brilliant. We were prepared for a fight with that we did, you know, we’d said to each other that actually we want them to be able to visit we want them to be a part pf his early life as well you know, and they need to be able to come and see him and, you know. And we didn’t have a fight, you know, they were, they were happy for them to come they were happy for them to come at any time of the day so they weren’t restricted to visiting hours and, and on NICU actually they even were happy for them for Grace who’s our oldest child to, to hold him. So, you know, she was allowed to have a cuddle with him on NICU even when he was, you know, I mean he spent some time actually on the ward in NICU and some time in a room with us but when he was actually on the ward they still let her come and give him a cuddle. So yeah they were, they were really good about that.

Angie and Luke had request specifically that they would allowed to stay with their son until he was asleep, and so were distraught when told they would have to hand him over at the door.

Luke: So you’ve got to have someone else there who can sit with and it’s just awful. Anyway so we get to the stage where we’re ready to go down for anaesthetic go into this room. 

Angie: The anaesthetist came and had a consultation with us.

Luke: So we went into this room didn’t we with him?

Angie: No, no that was later, she came, the anaesthetist came round to talk us through the anaesthetic and we said yeah and we’d really, you know, we’d obviously like to take him into the anaesthetic room and give him the anaesthetic while we hold, you know, we... I think what we said was ‘Obviously we’re coming in to the anaesthetic room. Will we be able to hold him while he’s anesthetised or will he have to be on a bed, we’d prefer to be able to hold him?’ And so, ‘You won’t be able to come into the anaesthetic room,’ and I said, ‘Well we specifically asked to do that and it’s really important.’

Luke: There’s a group of four people and this was about half an hour, fifteen minutes before he’s due his op.

Angie: That’s when we went down to the little room. She had this consultation with us and told us we couldn’t do that and we said, you know, and she was in quite a hurry. So she sort of said that - and I remember I said, ‘Well it’s, you know, it’s really important for him - we don’t want him to go, we don’t want him to go under feeling abandoned and stressed and alone,’ and you know, and she said, ‘Well if you want…’, I think I said, ‘I want him to go under happy’, you know, and she said, ‘Well I want him to go under safe and I can’t do that if I’ve got to be flapping about - worrying about parents’. So that was her parting shot and then when we took him down we said…

Luke: We said look it’s really important, and because I mean there’s been, there’s been actually quite a lot of studies on this and actually the stress levels that children feel and their body’s experience during operation is directly affected by their mood when they are anesthetised and the same with adults, it happens in the same way. And so there’s really solid research there and from children of I think two years old or so they accept completely that’s a need.

Angie: She said a year, she said, ‘Oh well we do it with children over a year, but he’s a baby he won’t, and he won’t understand the difference’.

Luke: So we went into this room with kind of, at this stage four of them and so.

Angie: In this sort of waiting room outside the theatre it’s all decorated it’s got sofas and, you know, and all the rest of it and it’s beautifully decorated ready for, you know, for you to wait for your babies operation and all the rest of it, so we’d taken him in and…

Luke: And they just said basically ‘Yes we’re not prepared for you to do that. Would you like us to cancel his operation, I mean it would take some time to reschedule, but if you want to reschedule at a later point, but no you’re not allowed to come in. Do you want us to put off his life saving operation knowing that there is a risk to his life by doing so?’ 

Angie: So yeah they basically - and you said to them, you said, ‘Well you’ve got us over a barrel haven’t you’, you know. ‘We’re obviously not able to do that and you’ve taken away all our choice and all our, you know, all our ability to parent him you just’, and they took him screaming, you know, he was screaming, you know, he obviously, he was distressed, you know, he’d been nil by mouth for some time.

Luke and Angie described a really good open access policy for their son who had Hirschsprung’s disease in their local hospital, which was also a specialist surgical centre.

Luke: And the, they’ve done a, because Hirschsprungs* is quite a messy condition and, you know they’ve issued, they’ve started, the Hirschsprung nurse got them to issue little cards that goes Hello I’m a baby with Hirschsprungs please call the consultant immediately and take me straight in, you know, so if you do need medical treatment you can bypass the whole going into the waiting room and waiting to be referred.

Angie: Which a lot of other parents - 

Luke: They have, they have a really good- 

Angie: Across the country have to deal with the have to go to A&E and then they go.

Luke: They have a really good open bed policy with Hirschsprung’s here so what it means is, is even now if he had a problem we can phone up the ward which deals with him and the specialist there and say, we’ve got a problem can we bring him in and be seen and we can go straight onto the ward as opposed to having to go through the whole admission process.

* 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.

Luke and Angie didn’t like information being drip fed to them, but rather wanted a straight answer to a straight question.

Angie: And that is another thing though we were drip fed information throughout the whole time.

Luke: Even when we specifically asked.

Angie: Yeah even, especially when we specifically asked.

Luke: You know, is there anything else we need to worry about, is there anything we need to do differently how do, ‘Nothing you need to worry about just treat him as a normal child,’ okay. He’s.

Angie: So we went to a consultant appointment and we said, you know, and they said, ‘Is there anything that you’re worried about,’ yeah actually he got a cold, he got the same cold that my girls had she coughed within days, you know, and he was still under the weather three weeks later and, you know, is there an immune component to Hirschsprungs. And he said, “Oh well yeah there kind of is, we do find that it takes them longer to shake illnesses off quite often Hirschsprung babies are hospitalised with coughs and colds”.

Luke: And we do have children hospitalised with.

Angie: But you said to us treat him like a normal child well obviously we do that, we take him out places and, you know, we don’t worry if he’s going to catch colds and things but it would be helpful to know that if he gets a cold and if it’s a bad cold he might need to go to hospital, actually that’s not unreasonable information to give a parent.

You touched on information, you’ve talked about your researches and you’ve talked about the information being a little bit drip fed in the hospital, just tell a little bit about how you would have liked the information to have been communicated to you from the hospital?

Luke: I think it’s really difficult, because I completely understand that there are, that the hospitals are in this situation where you are dealing with a vast number of people with huge different levels of educational bases huge different emotional levels and people may or may not want all the information in the world or not want to be overwhelmed our whatever it happens to be. How I would have like to have received information is I would have, I think the leaflet they gave out which is kind of a A4 sheet of hey this is what Hirschsprungs is, what would have been helpful is if you would like to read more go to X website and that be a website which has got really in-depth, detailed information from a whole bunch of sources but that has been looked at and sifted through by a medical professional who’s gone actually yes that’s being replaced by this, you know, and actual good resource centre as opposed to, you know, being left to sift through this swill yourself. But yes I don’t think you want to hand that out to everyone in the leaflet because some people they just won’t want it but I think.

Angie: Having access to it is important and actually if you ask a straight question give a straight answer.

Luke: Give a straight answer yes.

When Luke and Angie rushed their new baby into hospital, they didn’t see their older daughter for several days, which they feel traumatised them. They now have regular conversations about what a frightening time it was for them.

Angie: I think they coped really well with it.

Luke: We got some things wrong.

Angie: Yes.

Luke: You know there’s no doubt about that and because we were so focused on we need to be ether for [son] we weren’t there enough for them at the time.

Angie: In the very beginning. And we corrected that for his operation.

Luke: We did corrected it very quickly.

Angie: You know they went off for the first three days I think they were, we didn’t see them and then his operation we said well we’re gonna have one parent at the hospital and one parent with the girls so that we’ve got that continuity. And we’re going to make sure that they can come and see him every day which they did. But yeah we felt like we dropped the ball a bit with them really and they still talk about it.

Luke: Yeah there’s no question that they’re were left traumatised by it, I mean.

By you disappearing?

Luke: By the whole experience, I mean they will still say now we will be having, you know, we were having a car journey two days ago and the youngest said, ‘When [son] was in hospital I was very sad because he could have died,’ and that’s a very regular conversation that we go through and we work through and, you know, it’s one of the big debates people have about whether you should tell children or shouldn’t tell children and for us it was very, very important that we were straight with them and that we - you know we were honest with them and that they knew that there was a risk. As opposed to having the shock and the situation of you went to hospital and now he’s just not come back. I know that’s a decision which lots of parents will go the other way with it and I don’t think there’s a right or a wrong and it’s kind of where your family’s at.

Angie: But we, I mean we now kind of, you know we have that conversation and they, and they say, you know.

Luke: And we said but we’re happy he’s.

Angie: Yeah we, we say and that now we’re really happy that he’s, the doctors treated him and he’s home and he’s healthy and things are good. And they’re starting to add that into the narrative.

Luke: Yes.

Angie: Which is great, you know, it is something that has definitely impacted their memory strongly, but they are starting to add to the narrative that we are happy that he’s home and, you know, that he’s doing well. And I think it made a massive difference to them that he was home in the between times, between when he first went in and his operation I just think we had a normal life and that was, you know, as normal as it can be with two wash outs a day. But it was, it was normal we did normal things you know, we went to parties and weddings and picnics and museums and all sorts.

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

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…