Emma

Age at interview: 30

Age at diagnosis: 28

Brief Outline: Emma was pregnant with her second son when she became worried that he was not moving. She had an emergency caesarean at 33 weeks. He was diagnosed with oesophageal atresia with trachea-oesophageal fistula (OA with TOF)* and needed immediate surgery.

Background: Emma is a business management officer. She is married with two sons.

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Emma was expecting her second son. Scans did not pick up anything untoward. But at 26 weeks she had reduced movements. She saw a midwife, who didn’t scan her or put a monitor on, and said everything was fine. But Emma felt that things were not right. One evening shortly afterwards, when she was 33 weeks pregnant she got very worried that she had not felt any movements, so went to the hospital. She was scanned and given an emergency caesarean. Her son weighed just 2lb 12oz and was diagnosed with oesophageal atresia (OA) with tracheooesophageal fistula (TOF)* He was sent for immediate surgery at the nearby children’s hospital. His oesphagus did not go into his stomach so needed be corrected immediately. Tests also showed that he had a heart condition called TOF.

The operation was a success but he was very poorly and took several weeks to start to put on weight and wean off the breathing machine. He was eventually discharged at the age of 7 weeks and came home. But life at home was tough – he picked up lots of infections, and his heart condition started to affect him seriously. He was in and out of hospital and had frequent spells when his oxygen levels would drop to dangerous levels. So he went back into hospital for open heart surgery when he was 6 months old. The operation was a success, but again he took a long time to recover. He was in hospital for a further 8 ½ weeks. Although he still needs lots of daily care and follow-up appointments with various specialists, he is now progressing well. He started walking aged 17 months. However, his heart condition was not resolved at the time of the interview, Emma was waiting for a meeting with the surgeon to discuss a further heart surgery.

*Oesophageal Atresia (OA) with Trachea-Oesophageal Fistula (TOF)
OA is a rare condition where the oesophagus (gullet/foodpipe) is not connected to the stomach and is blocked. This can be associated with TOF, where the oesophagus (gullet/foodpipe) is joined to the trachea (windpipe). 

Emma’s baby was born at 33 weeks and she didn’t see him for 6 hours as doctors stabilised him. She was then told he needed immediate surgery.

And they were saying he should have been about 4 and a half, 5lbs at 33 weeks and he came out and he was 2lb 12 and he wasn’t, he took a breath but literally they went baby gone, you know, we didn’t see him for six hours and they just said your placenta’s gone, this baby hasn’t grown from about 27/28 weeks but they did say to me that if we’d left it till morning he would have been a stillborn cos he was on the way out. We got taken round to recovery we started making phone calls and obviously a bit shocked, never seen this baby yet, you know, was a quick glance as they whisked him out the door and then they came in with a picture for us, the doctor said there’s a picture of him but we need to talk and I was like oh no what are you saying. So he wasn’t breathing right so they went to put a tube down and the tube curled back up and he said I think he’s got something called Tracheoesophageal fistula with a oesophageal atresia* and he’s gonna need immediate surgery we’re sending him to [hospital] which was the children’s hospital in Scotland. Obviously by then I don’t think I’d even said the word oesophagus I don’t, I didn’t know what it was or, but they did say look he’s very unwell he can’t swallow he’s got all these bubbles he’s not breathing right and my husband said, ‘Well can I follow the ambulance through?’ And they were like ‘No because we don’t know if he’s going to make through the ambulance journey’ which, and then they left us and they didn’t call us for like six hours, we got a quick call before they took him away and then we heard nothing for about six hours because they had to try and get him stable we didn’t know if he’d made the journey and it was awful, was really awful.

* Oesophageal Atresia (OA) with Trachea-Oesophageal Fistula (TOF)
OA is a rare condition where the oesophagus (gullet/foodpipe) is not connected to the stomach and is blocked. This can be associated with TOF, where the oesophagus (gullet/foodpipe) is joined to the trachea (windpipe). 

Emma said that suddenly having to deal with all the medications at home was very difficult. No one gave her a plan for how to manage it all.

I think when you come home, never having been doing medication and doctors before having to suddenly deal with a lot of medication is very difficult and I think there is no follow up to that, there’s no-one to go ‘How do you do these levels, do these levels need to go up, does he, can he start to come off them,’ it’s only if you’re having an appointment with our specialist that they’ll look at it, nothings looked at in the meantime. And [son] was on a lot of medication so to suddenly be brought home and I’ve got pictures and it’s like so much of it, you know, and Vitamin A, Vitamin D, Vitamin K he needed liver medication, his reflux medication, heart medication there was so much and it’s hard to manage, no-one can say to you, do a plan, do this, you know, the best way to give medication is have a chart and you can tick off or anything, no-one gives you any plans of how to manage it. And I think when you first come home until you get into a routine that works for you that’s something really difficult and really scary because how do you know you’ve given them, you’ve given them a 100% right, no-one tells you how to pull it up no-one tells you you’re doing the right dosage, no-one checks it so how do you know, and you do learn but that’s really hard and there’s no follow up to that, none and that’s difficult to manage.

Emma wanted to try and keep her older son in his routine, as he was very unsettled by her being away from home.

And then suddenly this came round and we hadn’t had time to save on top of it and 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.

Yeah, is your older one alright now that you’re home are things a bit more stable?

He is he still has times, so when [son] was back in hospital last week his teacher commented, [older son] he was unsettled in school struggling to concentrate a little bit and so… I’ve actually got a meeting with her tomorrow cos I don’t think they handled it very well, they have a points system and he kept getting points taken off him for not being settled even though they knew [son] was in hospital. So I wasn’t, yeah I don’t, I didn’t agree with it because I was like well, you’ve got to have a bit of leeway here, you know. It’s not a normal situation, his mum and dad aren’t there, he’s not sleeping in his own bed, he doesn’t know when we’re gonna be home, he’s gonna be a little bit unsettled, rather than taking a point, maybe talk to him, do you know what I mean [laughs].

Yeah so actually I’m going into the school tomorrow just to kind of discuss it more with them. But they don’t know a lot about [son]’s conditions, you know, our doctors surgery’s been really open and honest and said we’ve never had someone with [son]’s conditions in this clinic, we don’t actually know, they try and, you know, check his heart and they’re like we can’t get his heart, we can’t even do his, you know, his pulses because it’s that all over the place. So the school haven’t really got a chance because they don’t understand [son]’s condition so how are they meant to support [older son]. But the good thing the paediatrician are arranging this there’s supposed to be a new liaison nurse to help when [son] starts going to nursery, starts school of what he’ll need with him at school and I’m hoping when that starts to kick off that the school might understand more about the support that [older son] needs because of [son]. Cos it’s hard on the both of them, you know, so maybe [son]’s going through it but [older son]’s had a massive upheaval as well and I think you forget about that, you know, we’re going through all the hospital but then you’ve got a little 3/4 year old at the house not knowing where his mummy and daddy are having a baby brother or sister which is hard enough for a new a child to contend with and mummy has left me and I’m in the house and they were there when I went to sleep but they’re not there the next morning and. It was a lot of upheaval for him.

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

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.

Emma initially found one of her son’s NICU nurses a bit frosty, but after a couple of days she explained she’d been focused on getting to know the baby. Emma would trust her to the “ends of the earth”.

It is NICU there was one nurse in particular that I really got on with, she was very difficult to begin with and I don’t think I liked her to begin with because she didn’t really talk to me but I eventually found out she turned round she went ‘But I wasn’t getting to know you the first couple of days I was getting to know [son] and I wanted to know every detail about him so I could tell when something was wrong,’ and she did, [son]’s ventilator wasn’t sitting right one day and his monitors were all fine and she kept looking going ‘He’s not right,’ and I was like ‘But he looks fine,’ she was like ‘He’s not right,’ and she was right the ventilator had moved and she just knew that by looking at him, and I knew from that second she was, I was like I will trust you to the ends of the world and it was lovely cos even when she didn’t have [son] she would come round and ‘How’s my boy,’ and I didn’t really have that with any other nurses in there, they’re very good with watching the baby on the day but then they don’t, they move onto the next baby the next day. In cardiology again they’re good but I think the nurses are amazing I will never go on about their work or, they’re there all the time but some of their job was taken up looking after babies because parents aren’t there and that used to frustrate the life out of me because they’re not a mum, they’re a nurse and if your baby’s in you should be with your baby and there was quite a few people there that would leave their babies all day and only visit for half an hour, leave them at night and if these babies were crying and they do something because they’re crying they’ve gotta pick them up which means that other babies are missing out on medication times, you know, they’re gonna be late or missing, you know, getting their dressings changed or just because they’re having to do mummy stuff to other babies. 

Emma’s son was born with OA with TOF and other complications. She said she really needed to find people in similar situations to help her through the dark places.

I’ve done quite a few support groups which I think help, because as much as the doctors are against them because you see the bad side of the stories, actually what you also see is the positive and you see how well some children are doing I think when you’re in a dark place, which, let’s be honest every mother of a child that’s poorly goes through dark places I think you need other people there who are going through similar situations. I think the hardest part of being a mum with a child with serious conditions is that you get really lonely, you lose a lot of friends and family cos people don’t know what to say to you. Which is hard and I think you get a different support network from these groups.

Yeah, yeah.

So, yeah I tend to think like that [laughs].

And how do you know that doctors are against them?

They said, they, a couple of people, oh [support group name] mummy’s group and, you know, don’t go on there you’ll see all the negatives and things like that, but I did join and I’ve gotta be honest, yeah you get the odd person complaining and the doctors aren’t doing this and they’re doing that but the way I see it is they’re just having a vent, you know, let them vent they’re not really slagging the doctor they’re just, they’re upset with the situation because it’s their baby and they’ve got to have somewhere to vent with people that understand cos it’s hard I can’t discuss in full detail [son]’s conditions with my friends and that because they don’t understand so you just gotta say oh he’s not doing very well today or he’s not breathing quite right I can’t suddenly go into detail with them, whereas with some of these groups I can because they understand what the terminology is and how he’s doing and I think you need someone that you can talk to that you can relate to in this situation.

Yeah, did you make any friends in hospital?

I did, I did and I’ve gotta be honest I would class some of them as really close friends now I speak to them regularly it’s harder for those whose babies didn’t come out or who’s babies are still in but yeah we, you, we stopped at Ronald McDonald House and obviously you get to, you live with these people you might not be staying in the same rooms as them but you live in the hospital with them, you go home you eat dinner with them, you go back to the hospital so you do make some really good friends through it.

Emma said that while she took a while to settle into things, and come to terms with things in her own time, it gets a lot easier.

It gets a lot easier, it’s hard when you first go through it and you’ve got to settle with it or understand it in your own time and you come to terms with it in your own time, no-one can tell you when you can come to terms with something but the more you find out about the conditions the easier it gets because you start to understand what will work for your child and it does get a lot easier. But I would honestly say use the support groups use other mums and speak to other mums and dads that are going through the same situation especially the dad because dads tend to, mums talk, dads tend to stay very quiet the support groups have a lot of dads on and the dads meet and talk and especially the family unit you need someone else that you can talk to that understands the conditions. So I would say use them, in my opinion, cos they’ve been really good for us.