Julie

Age at interview: 39

Age at diagnosis: 30

Brief Outline: Julie’s second son was diagnosed as having a congenital diaphragmatic hernia (CDH)* when he was 20 weeks old. He had one operation while still in utero, and several more after birth. He is now a thriving 9 year old at junior school, but still has a tracheostomy* and needs 24 hour care.

Background: Julie is an IT administrator. She has four children aged, 11, 9 and four year old twins.

More about me...

Julie has four children; an 11 year old, a 9 year old and twins aged 4. When her second son was 20 weeks old a scan picked up that he had a congenital diaphragmatic hernia (CDH)*. Julie was referred to London to a specialist hospital where a surgeon recommended a special balloon treatment to his trachea to try and open up his lungs, which were not developing. He had this through keyhole surgery when just 24 weeks old. His condition immediately improved, although Julie had to continue to travel to London (over 2 hours’ drive away) for regular scans for the rest of her pregnancy.

Her son was born in their local hospital when he was just under 34 weeks old. He was very poorly and had to undergo four operations in his first few months of life. These included a repair of the hernia in his diaphragm, removing a blockage in his colon, a gastronomy* and a tracheostomy*. There were several months when he was very unstable, but doctors finally managed to stabilise his breathing and feeding and he started to improve. However the final tracheostomy operation left him dependent on a ventilator to breathe, which meant that he was not able to be sent home from hospital until there was an overnight care package in place for him, as he needs a nurse to watch over him at night and help him with his breathing. This was not in place until he was almost three years old.

He now lives at home and attends primary school. However, he is still tube fed and he has regular appointments at the local hospital as he has several ongoing health needs. It was discovered that the original balloon operation that he had before he was born damaged his trachea, and so he is facing another major surgery to reconstruct his airways.

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

*Tracheostomy
An opening created at the front of the neck to allow a tube to be inserted into the windpipe (trachea) to help with breathing. 

*Gastronomy

Julie said she honestly wasn’t sure how she coped.

So how have you coped through all this?

Next question [laughs] I don’t know and that is the honest answer I don’t. I, you know, I don’t know how, if I’ll, I will cope with [son] having more surgery cos like I say his last surgery was when he was, his last major surgery was when he was two and I just used to hide away, didn’t want to talk to them because it was, you know, always negative news that you were given and then I found out since then that, cos this was right when they started introducing like the carers to him, that were going to be looking at after him over night. And the one that’s still here, she told me a couple of years ago that she was told that [son] wasn’t going to make it. And it’s like even then, even though I knew he was here I knew he made it it’s like, you know, a knife in your heart. And I knew it, I knew it I just didn’t hear it because I didn’t let them tell me.

But you know this stuff don’t you just from looking at yourself and, you know, being there and yeah.

Yeah. And it never goes away, you know, even, even now and this is the other thing that, you know, that I feel that professionals need to take on board just because you’re seven years down the line, it doesn’t meant to say that it’s all gone away because it hasn’t. Because it’s very much still there, you know, I still panic that [son]’s diaphragm is going to come away, I still panic that all the scar tissue in his stomach is gonna you know, screw up and because if that twisted and triangulated, he’d be gone, you know, there’s still and it petrifies me, just as much as it petrifies [son] of wanting him to have more surgery because it’s never gone smooth, you know, each time we’re told well he’s older now so, you know, he’ll cope with it better and it’s like well, don’t happen.

Julie was in hospital a long time with her son. She built great friendships with the nurses, and wouldn’t have got through it without them.

Don’t get me wrong they’re, you know, they’re even them, you know, there are some awesome people that work there and if it wasn’t for them we wouldn’t have got through it, I wouldn’t have got through it, you know, the nursing staff were, were my friends they were [son]’s family and, you know, even, even now I keep in contact with them and, you know, cos we were there a long time and we made a, you know, a great friendship. Even the play specialist that’s involved with him now she was on the PICU* when he was and she had a lot of input into it and I was really close to her she was my, you know, my support really. So there are some phenomenal people that work on that ward and it is really ironic because actually the Well Child nurses that are involved with him now are actually nurses that were on the PICU so it’s gone a full circle and it’s just amazing, you know, and I, I think that’s why it’s become easy, easier because obviously they have known [son] from then and, you know, they love the fact that they’re involved with him now and I love it because I know them and I know what they’re about and I know that they’re gonna do their upmost for him and yeah so. You know they come and, they still come and see me now some of them just, you know, text me and say are you free for a coffee, I’m like, yeah, you coming round? So yeah.

* Paediatric Intensive Care Unit (PICU)
PICUs care for children and infants requiring high levels of care, in particular breathing support with a ventilator (breathing machine).

Julie had a difficult relationship with her surgeon for a while. It was always bad news, and she would hide when he came round. But now she has great respect for him.

Okay, so tell me about your relationship with him and then

It was quite difficult to begin with cos obviously I found it, I found it very distressing the fact that they, they kept saying he was okay because of the fact they kept coming and saying he’s okay so carry on feeding him and I sort of was very bitter when [son] got pneumonia and everything at ten weeks because he aspirated because they kept feeding him even though, even a ‘Blind Freddy’ could see that he wasn’t tolerating it because he kept vomiting. Yes he did little bits of poo but, you know, even with a bowel blockage something could get through. So yeah it was really, it was really difficult and at one point we, they wanted to do a - is it fundo? Can remember, the fundoplication?

Funderplasty is that it?

It’s where they sort of block off the top of his stomach so he stops vomiting and the contents stay in his stomach. I can’t think of the proper name for it. We were like, you know, he’s not touching [son] it’s going to be done by a different surgeon and they got, they talked about it in like a meeting and then the other surgeon said, you know, you shouldn’t be doing it because, because [son], he only had one fifth of his diaphragm so the rest of it was made up of pig collagen, and his stomach was actually stuck to the patch so they said that it was suicidal for them to go in and mess with that because they would be messing with his patch as well. So it was decided that that wouldn’t go ahead and but from that point forward our relationship with him was quite strained until [son] had his second diaphragmatic hernia when he was two and they didn’t, they did a CT scan and they found that he had this, this bowel blockage they didn’t know it was his diaphragm. And so what was supposed to be a simple operation turned into six hours and then he came back and [son] had developed complications, he got an infection in his stomach and he kept dropping his blood pressure and all things like they just used to say that, you know, well they didn’t actually say that to me because every time a surgeon came on to the ward I used to go and hide in the quiet room. Cos I didn’t want to speak to him, I didn’t want to hear what he had to say to be honest. And then he went for another CT scan the week later and they saw that he had an infection in his belly and so they put in a drain in his belly that drained out all the puss and then they continued with the antibiotics and then that luckily made the difference and he started getting better.

And it was all about money because, because it was like [local city] got our funding in August 2007 but they actually didn’t do anything with it until April 2008 but that, you know, just another eight months out of our lives and what does that matter. So but when he yeah when he you know, made him better again it was like nothing really matters now, you know, he has made [son] better, we owe him everything sort of thing. So since then we’ve had a really good relationship with him, he’s still [son]’s surgeon and we still don’t deal with anybody else and [son] always went, [son]’s not that fond of him because they, because of the feeding tubes that he had as a baby he couldn’t have the one with balloons on so he had to go to a device where it could only be placed by a surgeon. And these tubes only last about six months if you’re lucky and [son] he’s got two so sort of twice a year he’d have to go and have these tubes changed by his surgeon and it’s painful cos you have to put a certain amount of pressure on and pull it hard and then it bleeds, and so [son] developed quite a phobia of it until last year they said because of how distressed that he gets and it was sort of like he’s getting stronger and bigger and it was taking like three people to pin him down just to change this tube. So they said they wanted to try the balloon ones again so we did last August and luckily it, he was, he’s been fine.

Julie had a toddler at home, so after staying in hospital with her baby for 8 months, she started just visiting in the daytime so that her older child could go to a nursery.

I’d we stayed there until he was eight months and then we thought it was best for [eldest son] to, you know, be with his own kind so I walked dropped [eldest son] off, get up drop [eldest son] off at nursery at quarter to nine, go to the hospital spend a few hours with [son] and then come and get, come back get [eldest son] from nursery and go back, I would drop [eldest son] off at my Aunties and she would have him for the afternoon and then I would go back to the hospital. And then spend the time with [son] just doing ordinary things, you know, playing with him and I would bath him at night time and put him to bed and then [partner] my partner would come with [eldest son], he’d pick [eldest son] up and then they would come at about 6:00, half past six and would spend a couple of hours as a family. [Son] would be in his cot cos it wasn’t really practical at that time to take him anywhere. And then [eldest son] he’d get in [son]’s cot with him and, you know, just play once we put, did [son]’s bedtime routine and then we would leave him about 8 o’ clock and then take [eldest son] home.

Julie described how her son has spent so much time in hospital having treatments and test that he assumes he will be hurt, and is fearful about going in.

To be honest [son] would never speak to them before, he would never speak to any hospital staff because he just assumed that he was going there to be hurt. But in the last year it’s sort of shifting because when he goes there now, nobody apart from when he had a blood test the other week apart from that, you know, every time we go there’s no pain involved so yeah his idea of hospital is actually shifting and we have got an appointment to see the surgeon on, in December so I think he will be very chatty. The nurse, the gastrostomy nurse that is always there when the tube changes were happening he would never talk to her at all and then about six months after he went to a different tube he saw her, we saw her in the corridor and she, he never shut up she was just like amazed that he was actually talking to her and not just blanking her.

Yeah. And how often are you going there now?

All the time, he lives there. 

Still?

Yeah cos he’s cos he’s got under so many different people we, you know, really we’re a good thing is, you know, they all get together and say let’s do [son] on that day. So the, a couple of weeks ago we had three appointments in one week then the following week we had two appointments, he’s got one on November 2 and then he’s got another one on December 7 but I think cos he’s now, [son]’s now under a psychologist as well and a play specialist because he, obviously he’s been through so much and he, [son] needs a reconstruction of his airway down at Great Ormond Street, they’re the only hospital that do it because obviously they specialise in children. And he’s not, he’s not on board with that so he’s now under a psychologist as well to talk about it and talk about his fears and hopefully we can, you know, move him forward.

When does he, if he was on board with that when would he be due to have it?

As soon as soon as they arranged it. They wanted him to go on November the 4 and 5 to have some tests but I mentioned it to [son] and he completely broke down so he needs the play specialist and the psychologist here to do, because he was meant to have, he had blood tests not last week but the week before and he was meant to have that in June but he just completely had, he was hysterical so he’s had a lot of work put into him between then and the other week and that’s what needs to happen.

So you’re able to get him to hospital and then he gets upset there or?

No

Is it when you start leaving here?

He starts crying, he’s, you know, he’s crying the night before, he’s just.

Yeah, every time he goes?

Not, it used to be, not in the last sort of like six months because he sort of trusts now that he’s not going for a pain reasons. He was upset when he was going for the blood test and even though cos he had the cream on and he and the play specialist had a book in front of us so we were doing ‘Where’s Wally’. And then the nurses were like he was crying hysterical, hysterically and the nurses had like a tube of blood and [son]’s like oh and he was just so, [son] never ever stops talking. And after that he was completely, he was completely speechless, the play specialist was like I’ve never ever seen you speechless before [laughs]. I don’t think, I think he was in shock to be honest that it actually had happened and it didn’t hurt so yeah.

He’s got a lot to get over hasn’t he?

Yeah, oh definitely.

Julie described the arguments she had with her partner, and how isolated she felt while she was in hospital, and he was working and looking after their older son.

And how would you say that’s impacted you and your partner and [eldest son]?

A lot, me my partner used to argue all the time when we were there cos obviously he was stressed because of [son] and work cos, cos at the same time we found out that that [son] was ill, he actually, he was in a partnership with someone and he walked away from that because it wasn’t, the other person wasn’t family orientated, he was very work focussed. And because [partner] was very family orientated, don’t get me wrong he works, still does work all the hours God send but when, in the evening he comes home and the focus is on the kids and his partner at the time didn’t like that. So he walked away from that and he had to walk away leaving all his customers because that was there, it was his business and the person joined him. But because he was the one walking away he had to leave everything so he had to start from scratch. So yeah he had all that side as well worrying about I had all the, you know, living in a hospital and feeling very isolated and lonely, I didn’t really have any friends because I was just stuck there and nobody came to visit once, you know, the novelty had worn off it was just, you know, normal for [son] to be in hospital so no-one came to see him. So the nurses became my friends and my support yeah it was, you know yeah it was horrible.