She was very well until about seven and a half, eight months, and we hadn't had any problems and then she had a slight cough and a cold, so we took her in to see the doctor and the doctor said “Yeah” but didn't really, she was kind of yelling and having a bit of a shout, and the doctor kind of said “Oh well she's probably got a bit of a cold we'll give her some antibiotics, if it hasn't gone come back kind of in ten days” and that was on the Thursday. We'd come down to see her grandparents and on the Monday morning sensed that she wasn't quite right again and her cold wasn't getting any better, gradually over the course of Monday morning I said to my husband “I think we ought to take her in to see the GP”. I couldn't actually get in to see the GP, he said “Oh well if you're worried about her take her up to A&E at the hospital” and gradually as the morning went on she got less and less happy and normally, if she wasn't happy I could normally feed her and that rectified anything, it sounds terrible but if she was unhappy I'd kind of put her to the breast and she was fine. And this particular morning she just didn't want anything, she was getting unhappier and unhappier, my husband came home and said “No she really isn't right” so we took her up to accident & emergency. They had a paediatric accident & emergency which was great, took her straight in and they knew straightaway there was something wrong, they whisked her into a side room, took me with her and said “No, no we've got problems here we need to try and resuscitate her she's very” I'm trying to think of a word, dehydrated, and they spent about two hours trying to basically get lines into her and to rehydrate her.

Had she been feeding or had she slowed down because of the cold?

She'd been feeding fine until the previous day and really until, even the night before she was fine and then suddenly that morning.

So it happened very quickly?

It was a very, very, very fast thing and suddenly she just presented herself as really not very well, she started to go a bit floppy and rolling her eyes around a little bit, we just knew there was something wrong.

Did you have any idea how serious it was at that stage?

No comprehension, I just thought she had probably a very bad cold, possibly an infection of some sort, we got her into A&E and we realised quite quickly, they thought I think initially it's probably pneumonia, but still we didn't really have any comprehension and then, as I say they took a couple of hours of trying to resuscitate, they couldn't get lines into her because they couldn't find any veins, which I now understand is because she basically was so ill, and they had to put lines in the end into her bone in her leg which was fairly harrowing. They were going to take her up to intensive care for a while, and we were sitting, and then one of her paediatric consultants came and said “We've just taken an x-ray and we think it might be the heart” we were kind of like “Ah” so from, she was fine to, she may have had oxygen deprivation and we may have, you know, there may be slight learning difficulties to, “Oh we think she's probably got a heart condition and she may need a transplant and she may not make it, and we were both really in a complete state of shock.

You must have been on an emotional rollercoaster at this stage?

It was, yeah it was shock, it was pretty horrible actually that first day, but they got her up to intensive care and we just kind of, just in a complete state of shock really, I think you just kind of get on, and my husband's family were with us pretty quickly. You don't really have time to think.

So they got lines into her to rehydrate her. What were you doing about your milk supply?

I wasn't really thinking, I mean this is over the course of, we got her into A&E at lunchtime, they had her stabilised by kind of, I don't know, it must have been about six or seven o'clock in the evening. We knew we were going to get a bed in a specialist paediatric hospital, probably knew we were going there about six or seven o'clock, we actually got her across there, we arrived there about four o'clock in the morning so it was, I wasn't really thinking about it to be honest.

At this stage before you went in how often had she been feeding a day?

It was still about every three or four hours.

So still quite frequently?

Yeah, yeah, yeah.

You must have been very full by then?

I hadn't again thought about it until we got her on to the ICU [Intensive Care Unit] about four o'clock and then they gave us a bed, and I remember thinking I was a bit sore but when I woke up the next morning I was very sore [laughs].

And nobody said anything to you at this stage about your milk supply?

To be honest we were all so shocked with her and just moving her around and they could have done, I don't really know, actually they probably did but it was the least of my worries at the time, it was just “Oh well whatever'll happen will happen, we'll kind of deal with it later”.

So you woke up the next morning very full and very sore?

Yep, and then I sort of knew that I was going to have to express and again haven't done it but fully aware of people having done it in different situations even sort of down to friends wanting to go out to supper and express milk.

So you'd never done it at all?

No, never expressed before ever.

Was there anybody there to help you?

Yeah, fantastic [laughs], fantastic nurses, fantastic neonatal advisor and they were really helpful, one of the nurses took me up and a specialist helper, lots of different specialists there came and helped me basically and showed me how to do it and so I just got on with it really.

So were you hand expressing or using a pump?

No we had a pump and they showed me exactly how to use it.

Electric or hand?

Electric pump. I must have asked my sister if she could get me a pump from the chemist, a hand pump, but I was kind of dashing back to the hospital, didn't really get a chance to, think about it. But the breastfeeding advisor in the hospital came and helped me and showed me how to use the pumps, they had a little room, a couple of pumps and I managed to pump kind of three or four bottles and then took them down and gave them to the nurses [laughs] so it started straight away.

Did they use that milk?

Yeah.

How did they give it to her?

I'm trying to remember, in the first instance I think they were still feeding her, and they were feeding her through a tube, she had IV [intravenous] lines. I'm pretty sure straightaway she had a gastric tube and they were feeding through that, and they were very encouraging, to carry on giving her milk if I could.

What sort of things did they say?

They were just really encouraging, said it was good for me and that basically it would help her and that any antibodies that I had carry on. It was a paediatric hospital so they were very pro-breastfeeding, and that basically it was a good for me and good for her, just for me to carry on because we had no idea at this point whether she was going to be in hospital for a day or a week or how long it would be. 

How often were you pumping?

At first I was probably only doing it once or twice a day, because it's quite hard to get into the rhythm of doing it, I mean the baby's there and everything's changing, we were going to a lot of meetings to see what was happening with her, and probably once a day, and if I made myself twice a day. They did tell me that I ought to try three or four times a day but at the time I just wasn't really, I was kind of pumping once and trying to get as much milk as possible and then it, probably knew I should go back but wasn't really feeling up to it.

You've got so much on your mind haven't you? 

You have an awful lot on your mind and lots of things happening and I wanted to spend time with her and so I was spending a lot of time figuring out what was wrong with her and what, what to do and so we just, but kind of kept going back once a day I think, maybe twice.

So what else happened?

She was stable for a week. They told us that she had dilated cardiomyopathy, which is basically an enlarged heart muscle, probably as a result of a viral infection. We still don't know, more than likely not genetic we've now gone through the scanning process but that all happened in the first week, and that it was unlikely because her heart was so badly damaged that she'd recover, that her heart would recover, in some cases it does but it was unlikely because of the nature and extent of the damage with her that it would recover, and that it was most likely that she would probably be eligible for, which is quite a big thing, and able to have a heart transplant. So we were initially quite shocked, but we thought because there was a chance that she might, that the heart might recover we thought we'd give her another few days and see what happened before we put her on the transplant list. She was fine, she was gradually getting incrementally better over the course of about a week and then after she'd been in hospital for a week she had an arrest, so at that point we realised that basically, I mean they had told us that with children it's quite likely that it presents like this, it carries on like it can be a course of months, could be even years but, a little bit of a knife edge situation and as I say she arrested at which point we decided it was a good idea to put her on to a heart bypass machine and with a view to transplant, and we listed her at that point. And I carried on expressing and giving her the milk as much as possible [laughs] we just thought that was, again it was good to, the milk would give her a good chance if we just keep trying. And then she was listed, on a heart bypass machine for about nine days and she was then put on a left ventricular assist device which basically helped the left hand side of her heart pump with a view to waiting for a new heart. So it felt like forever but [laughs] we were very lucky, and she was on the ventricular assist device for just under a month and then a new heart became available which was amazing, just very, very short period of time, we thought it might be about six months, any time up to that, so we were very lucky.

So all this, anxiety and change in pattern and routine and what have you, and trying to fit in the pumping did that affect your milk supply?

It did, my milk supply dwindled actually quite significantly so after about a week I noticed it, and again, and it's quite upsetting just because I'd been absolutely fine right the way through, because I was in a hospital with lots of neonates and everyone and there were lots of new mums up there and they all had lots of milk and they'd occasionally come in with really helpful comments like “Oh it's such a shame mine's starting and yours is just going” [laughs] and I'd be sitting there, you know, with baby on a bypass machine trying to express. But I went and had a chat with the neonatal advisor in the hospital who was fabulous, and she explained to me that there were a variety of things I could do. I could maybe have a picture of the baby, which I didn't actually do in the end because I didn't need to, expressing more frequently, she also gave me some advice to go and see the GP, I also in the end took some I'm trying to remember what they're called 

So you took some medication to try and promote the milk supply?

Metoclopramide? It's an anti-nausea drug and one of the side effects is increased lactation, it helped massively.

It's a galactagogue.

It's a galactagogue, it was actually very helpful that, and to this day I don't know whether it worked or whether it was psychological but it helped. I expressed some three or four times a day, took the medication and my milk supply came back quite quickly, and I was able to express probably about a hundred mls about three times a day.

Where were you doing this expressing?

The hospital had an expressing room.

Always there, never back at your accommodation?

No because we were, to be honest, we were in the hospital, she was on the bypass machine then she was on a little ventricular assist device so we were with her, I mean I get up in the morning and kind of go down there about eight. The hospital provided us with accommodation across the road and we used to go back there at ten, eleven o'clock at night so the hospital offered me a breast pump to take across with us, it was available to all the parents, which was again fantastic. I didn't really want to go home at eleven o'clock at night and start and so I just used to go in first thing in the morning I'd go and see her, and then I'd go and express. My husband would encourage me to go off, go upstairs with the paper for half an hour and then I'd do that for three, four times a day and the milk came back.

So were you pumping one breast at a time, both breasts at once?

I was trying to pump both breasts at once, never really got into it, and I often did pump alternate breasts, I often found that one of them was better actually and I used to pump more frequently with that, and I'd try to vary it a little bit, so the milk came back and I got into a routine. It was actually easier in many ways when she was on the bypass machines because she was sedated, when everything got a little bit more back to normal and I wanted to be with her the whole time then going away for half an hour, three or four times a day was actually more difficult in many ways, it's funny, you wouldn't think necessarily that would be the case but it was, it was harder when she became more normal.

And was she taking all the milk you could produce?

The milk that I was producing she could take most of the time, after she'd had surgery they were putting her very slowly back on food again. The hospital encouraged me to carry on pumping to give them all the milk that I could produce, they put in the freezer and it was all labelled and we knew exactly when it was from. They used breastmilk for a day or if it had been frozen they defrosted it and gave it to her so it was never wasted. Well occasionally, they were really very good actually, because occasionally they used to end up wasting a little bit of milk and they were so apologetic [laughs], I'd say to them, you know, “Whatever I can produce is great, you know, it doesn't matter if you have to waste a bit it's not the end of the world” but they were always really encouraging.

Was she getting other stuff as well?

Well when she'd just had surgery she was on TPN.

Total parental nutrition?

Total parental nutrition for a little while but not for long, they always encouraged for me to carry on expressing and they always gave her the expressed breast milk first. When she started to be able to take more milk and they wanted her to build up her body weight, they were giving her formula as well, they'd give her expressed breast milk first and then they'd top it up with formula.

Was it normal formula or fortified milk?

They were giving her normal formula, it's not true actually, they were giving her formula that they thought, that they told me was the closest to expressed breast milk because it was good for digestion to start with, then once I started talking to the dieticians we started giving her fortified milk, which I'm still actually giving her.

How were they giving this, was this still through a tube?

All through a gastro tube, yep, everything was going through a gastro tube.

How long was she on the gastro tube?

She must have been on it about nine weeks on the gastro tube, and while she was on the various bypass machines and then on the ventricular assist device she was always fed by gastro tube. After she'd had her transplant she was on the gastro tube for about two weeks until a day, two days before we were allowed to take her home. I tried to breastfeed her, probably about a week after she'd had her transplant, she was really quite together again and very unsedated and she sort of knew that she wanted to and she couldn't do it.

Physically not strong enough is that what you mean?

No she was physically strong enough but then she'd kind of go to the breast but she didn't, it was almost as if she'd forgotten, she didn't quite know what to do, so she kind of, she'd sort of half latch on and then just give up. So then we tried her with a bottle.

So do you think she had to learn all over again?

Yes I think she did, but I think she had to learn all over again but then it's very fascinating really because there was clearly an awful lot of instinct involved. We tried her with a bottle and she didn't know what to do, and similarly we tried her, they tried her with a dummy when she was on the bypass machines because she was moving around quite a lot and they wanted to calm her down. She just didn't know what to do with the teat [laughs], she'd never had a dummy, she'd never had a bottle, she just wasn't interested in the bottle, she sort of kind of put it in her mouth and moved it around a bit, and then, I had a chat with the dietician and a couple of the nurses who'd both had children, and they said to me “Why don't you just skip the bottle, she doesn't know what to do with the teat, try her on a, a cup” so we tried her with a cup and she started to drink.

And what did you have in the cup?

Expressed breast milk, we put expressed breast milk, I used to keep it in the fridge, we'd warm it up, put it in the cup and then she'd try with that, and then she decided she liked it and one day she just started to drink, after about ten days after her transplant she started. She wouldn't have all that much to start with she'd kind of have ten mls here and ten mls there, and it was hard work, my husband and I tried to give her ten mls every hour and gradually she started to drink from this cup.

So was she sitting on your knee or was she still hooked up to all sorts of tubes and things?

She was. After her transplant it was, to be honest, a minor miracle, she came out and had a complete bank of everything, monitors and she was, literally she had lines everywhere. After a couple of days everything gradually started to come off. After about a week she still had intravenous lines for antibiotics and a variety of different drugs that they still needed to give her. She had been extubated, she was no longer on a ventilator.

I think it's funny actually the thing I've forgotten is key, about ventilation, she was ventilated and while she was ventilated clearly the only way to feed her was through a gastric tube. She was on the ventilator for a long time pre-transplant. She was extubated the first time about ten days before her transplant, so she was gradually getting used to that and getting stronger but obviously she had a sore throat and, it was, sore but new to her. After her transplant she came off the ventilator very quickly, two or three days, probably a couple of days after that, maybe three or four days after she came off the ventilator then we started to try and feed her again. As I said before she's not, she didn't take to the bottle at all but she gradually over time, over two or three days took to a cup.

Right, did you put her back to the breast at all?

I kept trying and again she didn't quite know what to do, but she still had the gastric tube in because we were still trying to give her a thousand mls a day just to build her up because she obviously, she'd lost weight, muscle wastage over the time she'd been sick, and so we were trying to give her expressed breast milk in a cup, then we'd try and give her a little bit of the fortified milk in a cup and then we'd throw [laughs] a hundred mls of whatever down a gastric tube and a lot of medications we were trying to give her orally by this stage, so it's all going down the tube. The consultants said “We really don't want to send her home with a gastric tube, how are we getting on?” so we had a real concerted effort to try and get her to drink and she was a complete star. She started to drink a little bit more and she was managing kind of three, four hundred mls so we took the plunge at about two days before she was due to go home and they took the gastric tube out [laughs], which was both terrifying and quite exhilarating, and it worked, and as soon as the gastric tube came out she started to drink. I tried to put her to the breast a couple of times but she still didn't quite know what was happening so the whole time when she was in hospital, she was either being fed by gastric tube or, toward the end, a lot more expressed breast milk and the fortified milk by cup. The day after we got home she suddenly decided that she was going to breastfeed again, and it was quite [laughs] quite funny actually, I was lying next to her and suddenly she rolled over and decided to start grabbing onto me and then decided that she wanted to feed again.

I can see the relief in your body.

Well it was bizarre, it was quite a relief because, well it was nice because she'd been doing it for so long and it was, [pause] it's a strange thing to, it's very hard to explain, because it wasn't really just relief that she was breastfeeding it was also, the relief that I could just breastfeed her, lazy mum again, I didn't have to kind of express and give her breast milk. She didn't stop feeding from a cup as well, so it was nice because we could get back into a routine, that we started really from then and I've carried on now with breastfeeding her in the mornings, breastfeeding her in the evenings and then basically giving her fortified milk in the daytime, again which is nice because I know that I can get the calories into her that way, she's still not small but just to try and get her back up to the kind of pre-body weight.

What about at night?

At night I'm breastfeeding her again now.

So she's still feeding through the night?

She's still feeding through the night, there's an element of me there [laughs], you know she's just had a heart transplant if she wants to feed every half an hour then she can have milk whenever she likes, that was then, and now we're kind of ten weeks in and I'm thinking now we've got to get back to normal. When we first came home and she first started breastfeeding again I was giving her a cup of fortified milk before bed, and then I was feeding her when she wanted to in the night. She was probably feeding every hour and a half again, I think it was more of a comfort thing. Gradually she's got back to normal, probably every three or four hours and she's not really feeding all that much it's more she wakes up. She sometimes has nightmares, I'm sure she's dreaming, which is probably a side effect of the medications that she's been on.

So she's still on medications?

She's still on quite a lot, she's on blood pressure medication, she's on anti-rejection medication which she'll be on permanently, she's still on antivirals, [tuts] antibiotics, she's still on quite a lot of drugs and she's been on lots of painkillers and sedatives and a whole host of things, as I say sometimes I think she's just dreaming and she wakes up and she wants mum and as soon as she knows I'm here she's fine, she kind of nuzzles around a bit and wants, clearly just wants me really and then five minutes later she goes back to sleep and she's fine.

So the breastfeeding's been a great way of comforting her?

Yeah, complete since we've been home, and she's just gone back exactly as she was when she was tiny to be honest. It has been really a very good way of comforting her, but, I've kind of gained some comfort from the fact that she's not gone back to the whole demand feeding every hour and a half type thing. In the daytime now she's much more structured and she is having solids. It's interesting, it's not really so much breastfeeding it's more about solids. Although she's lost three months in hospital, she's been on a gastric tube, she suddenly started to want solids, so she's actually now having pasta and bread and potato, she loves eggs and omelettes, so we're kind of interspersing I've been trying to give her three meals a day, solids, maybe a couple of cups of the fortified milk in the daytime and then I'm breastfeeding her through the night, and last thing at night.

So you've never used a bottle?

I've never used a bottle. We tried in hospital and she wasn't interested, so I'm feeding her three small, but solid meals in the day, she tends to eat most in the evenings, I give her maybe two or three 'bottles' of fortified milk from a cup, with a free-flowing spout. I took the valve out, because again she doesn't know how to suck from a bottle, but she happily drinks. She started to try and drink from a glass which is quite funny [laughs], probably all sorts of things she shouldn't drink [laughs], diet coke, but she's kind of falling into much more of a normal eating pattern and I'm breastfeeding at night, really three or four hours, really because she wakes up rather than she's hungry I think. About six o'clock in the morning she's hungry, I'll feed her then, breastfeed her at six, and then we get back into a kind of day's routine again.

How long do you think this'll go on for?

It's an interesting one because she's had a heart transplant, she's immunosuppressed I'm very keen to continue to give her my milk because I'm still a great believer in anything that I have immunity against. I'm helping her by giving her immunity. It's fascinating because I always wondered quite how much truth there was in it and prior to her heart transplant we've had every kind of virology tests all the different samples of all her blood's went off to virology, and it came back and she has definitely got immunity against rubella, measles and chickenpox. Now I'm not sure about the chickenpox, whether she's had that but the rubella and the measles she's clearly never had. She has to have got the immunity from me, and she also has an immunity to toxaemia, which I know that I also must have picked an immunity up to because when they did my bloods prior to having her it was there, and so I'm a great believer in, as I say, if I can continue breastfeeding I can sort of give her immunity against, you know, coughs, colds, anything that I may pick up an immunity against. It's a little bit of an interesting one because I don't know how long I'm going to breastfeed her for, I don't want to take it out too far, you know.

What would you like to say to another mother in the same situation as you've found yourself?

I think knowing that you can do something, breastfeeding is, it kind of kept me going, and as I say my husband was so encouraging, he felt we were doing something for her, and you do, and at times it's really quite difficult to keep going, and keep getting into the routine, but if you can just keep going it really is worth it, and the fact that she started breastfeeding again is just, miraculous in some ways I didn't think she would. After such a long period of time and it was great when we finally got her to drink from a cup, but the fact that I could give her, I sort of felt I was giving her, I don't know nutrients and just a chance to fight infection and, a whole variety of different things, it really kept me going through it in some ways, it gave me something back and I'm sure it was good for her.

Was that all it was about, was providing the nutrients and stuff or was there some other deeper psychological sort of connection or bonding or whatever providing for this child?

It's a difficult question, it's always difficult to kind of split the psychological with the practical, I suppose that I mean, there is a psychological side and yes you feel like you're kind of doing something for your child, you're so helpless in that situation. And you are therefore doing something, you can go off each day, and the encouragement from the nurses was absolutely fabulous actually they used to laugh and go off and say, and “Here comes Daisy” as I came back [laughs] but, yeah I think there is a psychological side as well you really feel as if you're doing something. It's also, it's knowing that there's, you never quite know what's going to happen the next day, I suppose the idea that you're continuing to breastfeed means that psychologically I suppose the idea is that you're actually going to get back to normal at some point so it probably keeps you going as well.

So was that what kept you going that feeling that at some stage you would get back to normality?

Yes I think you have to, you see her and each day you just, and it's a strange one unless you've been in the situation. If you'd have asked me three months ago I would have no idea that, you just keep focussing on the next hour, or the next day and, yeah it's the idea that you're going to go back to some kind of normality I think. And if even, you know, you don't know, you've no idea at any point what is going to happen. It's not necessarily about going back to normality, you don't really think, you kind of focus on the now and the immediacy of the day and you get into a routine, and then you just kind of feed her. It's funny it's almost even down to the fact that you know that she needs feeding every four hours, it's best that you know that you want to give her some breastmilk, you kind of you go and you do it and you get into the routine again actually as well as moving forward.

So this was something that allowed you to order your days in this surreal environment?       

I think actually, it doesn't really allow you to order your day, because your day is what it is and it is a fixed day and you have your ward rounds and the doctors and the nurses, you've got, you actually have to force yourself to do it quite a lot. But, it's bizarre, it's difficult to explain because it does force you into a kind of routine as well, you're kind of having to force yourself to get into a routine, and yeah it does, at the end of the day you are trying, you are hoping that you're going to get back to normal. I think there's, as you say, there's the psychological side of it, you don't think about it at the time but you are hoping at the end of all this if we get back to normal, then you'll take them home, my husband kept saying to me, you know, “The thing that'll keep us going is we will go home, the three of us will go home at the end of this” and we did, so everything did go back to normal.

You're amazing, you're amazing.

Oh I don't know about that [laughs], no she's amazing and the hospital is just fantastic and the help that I had really got me through it.

What would you like to say to health professionals dealing with women in this situation?

The more help and encouragement you can have, sometimes you don't know you need it, and I think just being there. I had the day about three or four days after she'd been in hospital and I went up to the breastfeeding room and I couldn't get the pump to work and I'd just had enough and she wasn't very well and I just sat there and I just cried, and I rang one of the neonatal advisors and just said to her “Can you just give me, I can't, nothing's going right now, she's ill, I can't get this[laughs] thing to work, I've just had enough” and she came up and she was just fantastic and she just looked at me, I mean she said “You know how to do this, you're trying to double pump with one tube” and just showed me and I just laughed and, it just kind of kept me going. Just having the people there and knowing that you can actually go and ask them, ask for help whenever you want to, and just the approachability of you know, just having those people there so if you can be there and you can be there to answer questions and, it's not always about, you know, it's not being there to give advice the whole time it's just, when you need help to be able to go and ask for it, it's just invaluable, really.