But he’s still being checked out regularly by various people, it would be nice to just say Come in if there’s a problem but I know why they do and I know it’s very good but it’s part of the just being normal it would be nice to knock a few of them on the head.

So are those all checks that are happening through the GP..?

No things that have been set up through the hospital or the health visitor rather than the GP so we don’st see, physically see the GP very much at all most of its other services, we’sve got speech therapists, dietician, physiotherapist home visitor consultant neonatologist as well as other check-ups on his eyes because of his eye problems and his ears just hearing tests. And then the surgeon at [city] the surgical consultant and the gastroenterologist consultant as well so.

So you’sre still in that kind of follow up phase aren’st you?

Very much yes and a lot, I mean for the last six weeks or more we’sve just had appointments every week, at least one appointment every week. And he has to have an injection every month over the winter of an antibody to try and reduce the risk of him getting bronchiolitis as well because he’s classed as having chronic lung disease.

Okay.

Having been ventilated for so long so they give them that every month to lessen the chance of them getting it and the severity of them of him developing it so it’s another, another appointment.

So you’re travelling to [local city] quite a bit, to [city] a little bit?

Most of the follow up fortunately is actually [name].

Okay.

So we only need to go to [local city] for eyes, ears and the antibody injection, most of the other things are [local city] sorry [name].

Okay.

Which is much easier.

So at ten months you’ve got one appointment a week?

We certainly have done since, since the beginning of October its physio this week.

And you’sre still on maternity leave?

Yes.

But you could well not be couldn’t you?

Oh gosh yes.

You could effectively use up six months yes.

Yes my friend went back at six months in mid-October, yes had I gone back at six months that would have been July, end of July he would have only been home six weeks, well not even that readmission at the end of June, we really couldn’st have managed that. And with his sleep he was still very unsettled at night really so it would have been completely unmanageable as well as horrendous emotionally to be going back to that and I know some parents have to do that and…

Thinking about the practicalities of, you know, juggling all of these appointments with, you know, if you had to be back at work as well.

Oh gosh yes especially if you were full time.

Yes.

Very, very difficult and I’m hoping that by the time I do go back we’sll have got rid of a few in the nicest possible way, I don’st want to sound ungrateful because as I say the service and support we have is absolutely superb but yes it’s just nice to not have them really.

We’sd been back and forwards to hospital to A&E since but mostly it’s just been living in the house for the first eight months we couldn’st take her out anywhere and then that golden day when the respiratory consultant said, Well you can maybe go to a little baby club with some other little babies.s I said, really we can take her out show her other kids and show her she’s not the only one in the world.s Yes so we went and he said, Yes but only with a few babies and no toddlers,’s and I thought well where does that exist. Right so I can’st- he’s telling me I can take her out but I can’st really [laughs]. So we went to baby massage and our lovely health visitor organised the baby massage for [Name] with only a couple of other little babies instead of the great big classes that it normally is so that was really special, that was lovely although trying to do baby massage on a baby that has a great big exomphalos* there’s not much baby left [laughter] to do massage on, but she enjoyed it and it was positive touch and it was yeah it was a really good way of getting [Name] used to having, having nice things happen to her. So yeah the period between then and now has just been lots of appointments with dieticians, speech language therapists, paediatricians every few months at the surgeon for reviews every few months with a respiratory consultant for reviews back to the cardiologist for reviews. In and out of the GP surgery more than my GP would like because [Name] has had every cough and cold going yeah bless him he’s quite sweet he quite often just says when it’s me on the phone Oh I’sll come and see you, I’sll come out on my house calls’s and comes out on his bike. Yeah we probably average about three appointments a week for [Name] so it’s busy there’s lots of people involved with [Name]. When I did her disability living allowance claim form there was 21 consultants on the list.

* 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.

I think we had a few months that were that were kind of seemed liked kind of normal family life I mean, you know. It was like, wow, that was a really full on experience. But you know, that’s over now and, and kind of, you know, get on with it. And then the next spring, so it was kind of the spring after she’sd been born, she just started getting incredibly ill and we had suddenly massive dashes to the hospital with respiratory distress, and you know, having to call ambulances and just awful.

And I think, in a way, that was worse than the original thing because it wasn’st anticipated and while, you know, I found when I was on the surgical ward mixing with other mums that the ones that were in the worst state, emotionally, were the ones that hadn’st had a clue before the baby was born there was a problem.

And then, you know, they were expecting to take home a bouncing baby and then they were told, Oh the baby has heart problems. Or, you know, really tough. Well, I think I was a bit better because I was knew what was coming or I, you know, kind of knew what was coming and, you know, had anticipated the worst so anything above that was great. So, but yeah, so with the respiratory problems it was a real massive shock and also we didn’st know whether there was any solution to them. Well, with the exomphalos* we had always been told, you know, as long as the baby can tolerate it, we can fix this and, hopefully, he or she will go on and have quite a happy, healthy life.
But with the respiratory problems it was just like, well, what’s causing this, what the hell is going on? You know, it just didn’st, it came from nowhere, so that happened several times, well, a few times and, you know, she was in hospital a week here, a week there, you know, had pneumonia, just really poorly. And so that period was really worrying.

And presumably you were into a whole different set of doctors.

Yeah.

And specialists.

Yeah.

At that point.

It was respiratory team.

Okay.

And, eventually, after this had gone on for a while, they said, Look, we want to have a look down her lungs and see what, what, what the problem is. And so that happened when she was, I think she was eighteen months, might have been a bit older. And we’sd, you know, we’sd had endless problems with, you know, a cold would end her up, you know, somebody would sneeze in the street and she would be in hospital two days later. I used to absolutely curse anybody who got ill, who came anywhere near her. So yeah, they took her in and had a look down her lungs and, basically, she had something called tracheobronchomalacia. So her lungs had grown thin and long because of, and her trachea had grown floppy, they think because she didn’st have the same support in her trunk below her diaphragm. So it kind of made sense for, you know, things had just [laughs] dragged down. But it meant that, when she got infections, or when hay fever impacted on her, which we discovered later was a problem, she’s also asthmatic, which we discovered later, it just meant those tubes were not coping at all with that.

Which, and it was great once we actually knew that because, basically, the team immediately put a programme in place. So it was like we didn’st, we no longer had to go, we didn’st have to do the calls to the ambulance people going, you know, going through the whole thing. We had immediate access to the emergency respiratory wards at the hospital with that. We didn’st have the ring a GP. We didn’st have to ring anybody.

*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.

Started having problems feeding him it would take an hour an hour and a half to get three ounces of milk into him. He’d take the first ounce and then he would scream, just scream and he was obviously in pain he was drawing his knees up and it was obviously, you know, in a lot of discomfort. So I went to the GP and he said, Oh it’s fine it’s just normal’s and I kept going back and then they said, Oh it’s colic’s and I said, It’s not colic, it’s not colic’s you know, and they said oh, they told me I was an over anxious mother because he’sd had surgery and I needed to treat him as a normal baby and I kept saying to them there’s something wrong, you know, this isn’st right. He would wake up between five and fifteen times a night, he couldn’st lie flat he would scream and that went on for a long time. I think when he was about four months going back and going back and forth I think the GP then had contacted the unit and they said it’s possible he had a stomach ulcer and maybe that was causing the problem. So they put him on tagamet which was medicine they didn’st usually use for children and that did help, he was on gaviscon as well in his milk and it helped a little and then, you know, it would revert back and that went on for oh I think until he was about ten months, we moved, moved from [city] and going back and forth all that time. and we moved to the Midlands and they transferred him to [city] Children’s Hospital and they were fantastic they had him in straight away and they put a camera down and they diagnosed him with a esophagul reflux and they said his esophagus was completely ulcerated and because the sphincter valve at the top of the stomach wasn’st closing and the milk wasn’st going into the, into the stomach it was coming back out and all the acid was going on the ulcers and that was why he was screaming.

Yes I think maybe that was the case, I don’st think they knew what to do with us in [city] really and you know, they, you know, they obviously have the surgeons to do the operations and whatever but they didn’st seem to have the knowledge for the follow up problems. but when we went to [city], you know, straight away they, they sort of had him in and you know and he was so poorly as a baby it wasn’st just the feeding, he picked up anything that was going so he had constant chest infections, constant colds, he had gastroenteritis where they wanted to hospitalise him because he was so poorly with it and, you know, it was just one thing after another. And even when we went to [city] and they wanted to have him in to put the camera down twice, three times, it was the third attempt because the two previous times he’d been too poorly with a cold and a chest infection to actually have that procedure done. So he was just obviously a very poorly baby, he was just his immune system was low and he was picking up everything up. So it was just constant with him, you know there was always something, he had bad eczema or, you know, there were lots of other issues and I think, you know, I think at [city] they just thought oh well you know I was being over anxious and, well, they told me I was being over anxious. And I was adamant that I wasn’st, I knew that there was something wrong.

Yes.

I just really felt that they didn’st listen to me until we went to [city] and we met Mr [name] and he, he sort of said right, okay we’sll get to the bottom of it. And that was when they had him in overnight and they put the camera down, put a probe and measured the acid in the esophagus and that all came back abnormal, so and then they put the camera down.

The main thing when I got home was I just felt a bit abandoned because I was here as well no-one here really knew I was back and no-one and at [specialist surgical centre] I just had the normal appointments so it was like just go back to your GP but I didn’st, shouldn’st have been, my GP didn’st know what to do cos she was ill. They were really brilliant and they, my GP’s surgery like because I’sd been told leaving [specialist surgical centre] oh, you know, she’s at more risk of her bowel being distended and swollen, blockages because her bowel’s been put in where we wanted it to go, rather than nature so if she’s sick or she doesn’st go to the toilet you need to get her to A&E well she’s a baby so the amount of times I’sd phone up and say I don’st know what to do and if you phone 111 or anyone like that and say she’s got this bowel condition she’s had bowel surgery and she’s not pooing and she’s being sick every time they say bring her to A&E, so you bring her down to A&E and they look at her and they go oh take her to [main local], cos you take her to [local] take her to [main local] and they go oh yeah I think she’s alright I think it’s just a virus and you’sre thinking I knew that in my heart but you just don’st quite know. But my GP surgery are great they just say bring her round and we’sll check her tummy, check her tummy and listen to it and see if its’s alright. So that was good having them here but I don’st think, it was me doing that rather than anyone else pre-empting that. I did have a health visitor come and see me when I was here cos I called up and said I don’st, aren’st I supposed to have someone come round I don’st know and they were like oh yeah, yeah we’sll send someone round and did the normal kind of does your husband beat you up kind of questions [laughs] obviously not.

Luke: And the, they’sve done a, because Hirschsprungs* is quite a messy condition and, you know they’sve issued, they’sve 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’sve 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.