I went for my normal antenatal scan and they said, “Mm-mm, mm-mm, mm-mm need a couple of more pictures can you come back again?” And so I said, “Yeah okay”, so we went back again and the second time unfortunately my husband couldn't be with me and they said, “There's a problem, there's a problem with the heart”, they couldn't diagnose the problem, my local hospital isn't enough of a specialist, so they sent me up to the local tertiary centre for cardiology, and I was seen by a couple of consultants who both, oh gosh they're all so fantastic and they diagnosed coarctation of the aorta at twenty-two week scan. Which is basically a narrowing of the main aorta coming out of the heart, it doesn't affect the baby in the womb because there's a duct that keeps the blood flowing but at about day three the duct would close and the baby would then turn blue and die if they don't do anything about it.

How did you feel when you heard that?

Devastated. I guess I'd always known, I have this friend, the same friend who fell pregnant after having been breastfeeding a three month old, and she had a child who was very poorly when he was born, he was very premie, and I went straight back to some of the letters they'd written us actually, and how they'd been so happy that he was himself and that it was still a very precious life and they were so grateful for the NHS and all this sort of thing and that was really how I felt, yes I was devastated, I was very upset that she wasn't going to be my perfect baby, but very grateful that I knew I would get the care I needed, very grateful that I knew she was still special, she was still precious and, this thing about, 'Well it doesn't matter whether it's a boy or a girl as long as it's healthy', well no even that actually at the end of the day it doesn't really, really matter what matters is that that's your child. And I fairly quickly came to terms with it, I think.

I had fantastic support from friends, family, the church and, real fabulous supportive network around me. My husband obviously, and to a certain extent we just had to get on with it, and there was nothing we could do at that point.

So she ended up back in Intensive Care, back on a ventilator and I'd actually never seen the milk flow so fast, everyone thought it would stop but it didn't, I think the adrenalin forced it out, and I knew it was the only thing I could do for her was to express and so I did, I expressed and expressed and expressed and expressed, gallons of it [laughs] every time I went down to see her they were like, “More milk?” stashing it away in their freezer ready for when she could take it, and it was very noticeable that when they were on the ward round discussing her feeds and when she was on the electrolyte salts, this sort of clear fluid, that doesn't look like food to me, [laughs] looked horrible, they were talking, “Oh maybe we can start her on some milk tomorrow?” And the nurse would say, “We've got EBM and mother's EBM in the fridge”, “Oh we could give some of that today”, and so it was obvious that they would start with expressed breastmilk much earlier than they would with formula and the consultants were very pleased that she had my milk, and by this stage we had so much stashed in the freezer the milk bank was long ago not needed. And so she started off getting that through the tube and then I kept on bullying I said, “I want to feed her, I want to feed her, I want to feed her”, and eventually they let me, they were worried that she'd tire herself out because, which is often a problem with heart babies, but they let me and it was a magic moment. I guess, finally I've got my daughter back, it was just so special.

How old was she then?

About eleven days I think.

So that's a good week that you felt as though…

Week and a half.

…you hadn't had your daughter?

Yeah absolutely, absolutely. Because somehow she wasn't my daughter when she wasn't feeding, now if it happened again, I would've said, “Okay feed her through the tube but I want to put her to my breast”, “Okay feed her through a tube but I want to drip some milk into her mouth from my breast”, there's all sorts of things that I know now that I wish I'd known then, partly from reading a fabulous book about breastfeeding intensive care babies, special care babies that I got hold of from La Leche League, surprise, surprise.

What's it called?

I think it's called 'Breastfeeding Special Care Babies'. It's written in part by the Lactation Consultant based at the hospital where I was, or at least edited by her, and it's absolutely fantastic and gave me so much knowledge, all after the event of course, but I plan to, the hospital's in a rebuilding programme at the moment, but when they've rebuilt their new building, I'm not going to give it to them before because they'll lose it I plan to buy them some copies for the Paediatric Intensive Care and for the Cardiology Unit, SCBU know all this stuff, that's not why they, they've got that knowledge there already but the Cardiology Unit and the Paediatric Intensive Care could really do with that specialist knowledge. But she fed, and she fed really well, and she was obviously satisfied by it, and she fed short bursts but feed she did and I was happy. Obviously the consultants went through their usual thing of wanting to measure how much she was feeding, and I understand that it is much more difficult when you have a special case when you've been very poorly you do want to know how much they're taking on it's much harder, you can argue all you like, with a normal baby you're fine, but I could see there was much more of an issue with her, but I could tell in myself she was getting enough, it was quite hard to persuade them that, and there was one weekend, a consultant who was covering for the weekend who was very keen that after giving her a breastfeed I should offer her a bottle to see if she was still hungry, and I said, “Yes, yes, yes” and didn't [laughs], because I wasn't going to, because I knew what would happen that the bottle would be too easy and that she would just go on to that, so I didn't, and she didn't lose weight, she was starting to gain by then, obviously she'd lost an awful lot while she was very ill, but she'd had a good amount to start with so it was all there to lose, and then she started putting it back on again, and they were happy with her weight, you could tell in her eyes that she was feeding enough, it was that simple, just look in her eyes, yep she's fine.

*Footnote: The book that this woman refers to is “Breastfeeding Special Care Babies (Second Edition)” written by Sandra Lang and published by Elsevier Health Sciences in 2002. 

I went for my normal antenatal scan and they said “Mm-mm, mm-mm, mm-mm need a couple more pictures can you come back again?” and so I said “Yeah okay” so we went back again and the second time unfortunately my husband couldn't be with me, and they said “There's a problem, there's a problem with the heart”. They couldn't diagnose the problem, my local hospital isn't enough of a specialist, so they sent me up to the local tertiary centre for cardiology, and I was seen by a couple of consultants, Oh gosh they're all so fantastic [laughs], and they diagnosed coarctation of the aorta at my twenty-two week scan which is basically a narrowing of the main aorta coming out of the heart. It doesn't affect the baby in the womb because there's a duct that keeps the blood flowing but at about day three the duct would close and the baby would then turn blue and die if they don't do anything about it.

How did you feel when you heard that?

Devastated. I have this friend, the same friend who fell pregnant while breastfeeding a three month old, and she had a child who was very poorly when he was born, he was very premie, and, I went straight back to some of the letters they'd written us actually, and how they'd been so happy that he was himself and that it was still a very precious life and they were so grateful for the NHS and all this sort of thing and that was really how I felt, yes I was devastated, I was very upset that she wasn't going to be my perfect baby, but very grateful that I knew I would get the care I needed, very grateful that I knew she was still special, she was still precious and, this thing about 'well it doesn't matter whether it's a boy or a girl as long as it's healthy' well no even that actually at the end of the day it doesn't really, really matter. What matters is that that's your child. I fairly quickly came to terms with it, I think. And one of the reasons I came to terms with it was because they told us it was a girl and they had to because, initially we hadn't wanted to know, and we didn't know with my son, but there's a genetic condition linked to the coarctation which she was liable to have because it only concerns girls and not boys. They had to tell us it was a girl, they had to tell us that she could possibly have something called Turner Syndrome [a genetic condition caused by a missing x chromosome that occurs only in females] which she actually doesn't have because they had to offer us the opportunity to have a termination if we wanted. We were like “Why would we possibly want that?” So that idea went straight out the window but I guess knowing that she was a girl, partly I was happy because let's face it I wanted a little girl, partly I could choose a name, I could talk to her and I felt I could start to build a relationship which I hadn't needed to do up until then, but because of the diagnosis it really helped me in coming to terms with this. With the first diagnose when locally they said “There's something wrong but we don't know what” I remember ringing up my friend and she said “Put your phone to your belly” and I put my phone to my belly and I could hear my friend shouting down the phone at my daughter [laughs] “You're going to repair that heart, you get strong young lady” [laughs] whatever it was she was saying and that had a real cathartic effect [laughs]. I had fantastic support from friends, family, the church and real fabulous supportive network around me and my husband obviously. To a certain extent we just had to get on with it, and there was nothing we could do at that point. There were certain decisions to be made, where I was going to give birth, and they wanted me initially to give birth locally and then move up to the tertiary centre so that I could go into labour naturally. I was very keen that we should be in the same hospital, I was concerned that if we did that, we would end up with an emergency section and they wouldn't move me, they would move my daughter and I wouldn't be able to feed her. So I put my foot down, and they said but you're more liable to have a section this way and I said “I know, I'm more concerned about feeding than the method of giving birth”. Yes they're both important but actually at the end of the day I'm more concerned about breastfeeding, that's more of a priority to me. So yeah I bullied [laughs] the consultants and they took me in for a planned induction which in the end didn't happen because SCBU [Special Care Baby Unit] was full, and two days later when SCBU was still full my daughter decided she was coming anyway thank you very much [laughs]. We had a nightmare of a labour, she started very slowly but waters broke and because of the heart condition they wanted to speed things up but the waters had broken only on the top, so they broke the bottom of the waters and then everything came at far too fast a pace and so I ended up in agony and epidural's and episiotomie's and ventouse's and third degree tears but she was born. She was put straight on my chest and she suckled in delivery. I'd been very clear about that, when the initial diagnosis had been made I'd said “What about breastfeeding and delivery?” It was almost my first question and they said “Oh yeah no problem, no problem at all”, they needed to fit a drip to her within the first hour of delivery but plenty of time to feed at the breast, and the consultants were very keen that I should, very supportive and, yeah I'd made it quite clear to the midwives [laughs] and so, out and on, straight on and yes she suckled straightaway.

Another magic moment?

Absolutely, another magic moment, pure magic. Tainted a bit by the knowledge that she was soon to be taken away but still magic. So then she was taken away, checked over, brought back quickly.

So she suckled okay at that first feed?

She suckled fine you wouldn't have known anything was wrong she looked quite normal. The SCBU nurses took her away into SCBU where she was three times the size of any other child because she was born eight pound ten, and boy did she need every ounce of it. They fitted the drip and then because SCBU was full she moved up into the Paediatric Cardiology Ward. I on the other hand was waiting to be sewn up, because I had this huge third degree tear, and so picture this if you will, I was laying on the bed, I was expressing on the one side by hand, the midwife was expressing on the other side [laughs] and trying to suck off the colostrum with a syringe [laughs] desperate to give my baby what she needed. Expressing colostrum is the hardest thing I have ever done, it's just so hard, it just doesn't come, and it's not made to be expressed. We got about one mil, no, one ounce out I think, over about an hour and a half, it was incredibly hard work but we chatted and we laughed and the anaesthetic worked [laughs]. I was in the Maternity Ward because I was still recovering after a very traumatic birth and she was in the Cardiology Ward. I long for the days when one can have a specialist mother and baby unit where we could both have been looked after in the same ward, I understand the difficulties with that but that would be lovely. So I'd get wheeled over in a wheelchair, and I'd feed her, except the first time I went over I couldn't do it, I physically couldn't hold her, I was too exhausted to hold her up. Thinking back on it now I should've said I need a bed, and I should've taken her into the dayroom, wires attached, and I'm sure they would've done it actually, and laid down to feed her, or insisted that someone came to hold her but, you know, they're busy and I was exhausted, I didn't think of it, and they're paediatric nurses not neonatal nurses, so they're not trained in breastfeeding either. They were immensely supportive but obviously lacking in training and knowledge, they had no idea about the impact of bottles, and I didn't even think about it till after they'd been giving her a bottle for two days.

So she was getting the expressed breastmilk through a bottle?

Through a bottle and thankfully it didn't have any impact on her.

What is the impact of giving bottles?

It can cause nipple confusion.

Which is?

Means they don't know how to suck properly on a breast because the sucking action is different from a bottle to a breast. It didn't seem to bother her thankfully and I knew they didn't know, they weren't doing it knowing that it was wrong, they just didn't know.

How would you have preferred she had received that breastmilk?

From a cup, or a dropper, but not a bottle. But, we got there. By the [sighs] second half of day one I could hold her and I was feeding her, and by day two I was starting to walk over, [pause] slowly and carefully, accompanied. I had the most incredible stream of visitors. I was touched because it's an hour's drive away and they all came to see me which was absolutely miraculous, it really was marvellous, and so people would walk over with me so that I could sit down on the way over. I'd spend quite a lot of time there with her as well and we'd just feed and feed and feed and feed, because I was well aware that she was going in to have a heart operation, to correct the coarctation and the more milk I could get in her beforehand the better it was all going to go. So then she went down for her operation.

How old was she at this stage?

Four days. And the operation appeared to go successfully, she was in Intensive Care for, I forget how long, but not an incredibly long time only one night I forget whether it was two full days or a day and a half, but it wasn't an awful long time. While she was in Intensive Care I expressed, they lent me a breast pump and stuff and I had a breast pump up on the Maternity Ward as well so, I guess one of the benefits of the fact that we were in different buildings was they weren't calling me over in the middle of the night and so actually I was getting a full night's sleep which was great [laughs] but I was expressing last thing at night and first thing in the morning and I'd go over to have my lunch and I'd express then, so I was expressing quite a lot and stashing it all away in the freezer ready for her. And she, I say, she was in Intensive Care but not for very long. She came out very quickly, recovered very quickly, back on the Cardiology Ward, back onto me, and she'd had a bit of my milk through the nasogastric tube straight into her stomach but not much. She appeared to be recovering incredibly well and then one day I went back for my lunch, came back to find her blue, she had re-coarced, the operation with a ninety-eight percent success rate had failed, she was re-ventilated and rushed back down to Intensive Care, and that night underwent emergency cardiac catheter surgery to put a stent in her artery to re-open it. They'd not done that initially because although it's a more guaranteed fix it now means that she will have continual surgery until she stops growing because the stent won't grow but she will.

Is this open heart surgery?

No, cardiac catheter, a little tube goes into the femoral artery in the groin and up, and the hospital where we were, thank goodness, is the world leading hospital for cardiac catheterisation on neonates. She just happened to collapse when the cardiac ward round was on the ward, so all the specialists were there, no crash call went out because they were all there, the only person they had to bleep was the anaesthetist. 

So she ended up back in Intensive Care, back on a ventilator, and I'd actually never seen the milk flow so fast, everyone thought it would stop but it didn't, I think the adrenalin forced it out. I knew it was the only thing I could do for her was to express and so I did, I expressed and expressed and expressed and expressed, gallons of it [laughs] every time I went down to see her they were like “More milk?” stashing it away in their freezer ready for when she could take it, and it was very noticeable that when they were on the ward round discussing her feeds and when she was on the electrolyte salts, (this sort of clear fluid, that doesn't look like food to me, [laughs] looked horrible), they were talking “Oh maybe we can start her on some milk tomorrow” and the nurse would say “We've got EBM (expressed breastmilk) and mother's EBM in the fridge”, “Oh we could give some of that today” and so it was obvious that they would start with expressed breastmilk much earlier than they would with formula and the consultants were very pleased that she had my milk. By this stage we had so much stashed in the freezer the milk bank was long ago not needed. And so she started off getting that through the tube and then I kept on bullying I said “I want to feed her, I want to feed her, I want to feed her” and eventually they let me. They were worried that she'd tire herself out, which is often a problem with heart babies, but they let me and it was magic moments [laughs] I guess, finally I've got my daughter back, it was just so special.

How old was she then?

About eleven days I think.

So that's a good week and a half that you felt as though you hadn't had your daughter?

Yeah absolutely, absolutely. Because somehow she wasn't my daughter when she wasn't feeding now if it happened again, I would've said “Okay feed her through the tube but I want to put her to my breast” “Okay feed her through a tube but I want to drip some milk into her mouth from my breast” there's all sorts of things that I know now that I wish I'd known then, partly from reading a fabulous book about breastfeeding intensive care babies, special care babies that I got hold of from La Leche League surprise surprise.

What's it called?

I think it's called 'Breastfeeding Special Care Babies'. And it's written in part by the Lactation Consultant based at the hospital where I was, or at least edited by her, and it's absolutely fantastic and gave me so much knowledge, all after the event of course. The hospital is in a rebuilding programme at the moment, but when they've rebuilt their new building (I'm not going to give it to them before because they'll lose it) I plan to buy them some copies for the Paediatric Intensive Care and for the Cardiology Unit. SCBU know all this stuff, they've got that knowledge there already but the Cardiology Unit and the Paediatric Intensive Care could really do with that specialist knowledge. 

She fed, and she fed really well, and she was obviously satisfied by it, and she fed short bursts but feed she did and I was happy. Obviously [sighs] the consultants went through their usual thing of wanting to measure how much she was feeding, and I understand that it is much more difficult when you have a special case when they've been very poorly you do want to know how much they're taking on. It's much harder, you can argue all you like, with a normal baby you're fine, but I could see there was much more of an issue with her, but I could tell in myself she was getting enough. It was quite hard to persuade them that, and there was one [laughs] weekend, a consultant who was covering for the weekend was very keen that after giving her a breastfeed I should offer her a bottle to see if she was still hungry, and I said “Yes, yes, yes” and didn't [laughs], because I wasn't going to, because I knew what would happen that the bottle would be too easy and that she would just go on to that. So I didn't, and she didn't lose weight, she was starting to gain by then, obviously she'd lost an awful lot while she was very ill, but she'd had a good amount to start with so it was all there to lose and then she started putting it back on again, and they were happy with her weight, you could tell in her eyes that she was feeding enough, it was that simple, just look in her eyes, yep she's fine.

What do you mean by that, what could you see?

A sparkle? A communication? It's very difficult to tell but I can't verbalise what I could see but I could tell by looking at her and she was starting to fill out, when she fell so critically ill there were two ways I knew she was really ill and one was because she turned blue, but the other was that her hamster cheeks had gone inwards and when they started to pop out again I knew she was getting enough milk. So we continued the feeding, light catharsis [laughs] to say I was going to give her a bottle and I didn't, but the senior consultant in charge of her was very happy with her and everyone who was looking after her seemed very pleased.

By this stage where were you housed?

I managed to wangle keeping my place on the Maternity Ward for quite a long time. They have a special ward there for mothers of difficult cases if you like, inter-uterine deaths, babies in SCBU, all these sort of cases because they get single rooms so that you're not mixed with all the happy mums and babies, and they actually had a spare room and so I kept it until the point came when they said “Look you really can't have this room any longer” I had a day before she moved out from Intensive Care, so for, I think twenty-four, forty-eight hours I went into on-site parental accommodation and it was in another building again [laughs] but it was what was free, it was what was there and technically you're supposed to pay for it but a heart charity paid for it for me without me even asking and by this point my husband had brought in my own breast pump which was better than the hospital one [laughs], and my own steriliser because I always think that [sterilising solution] doesn't taste very nice and that's what they use in the hospitals and I have a nice steam steriliser. So we carted all that over and then as I say she moved up from Intensive Care to the Cardiology Unit and they have a couple of side rooms where there's enough room for a mother and a child so we moved in there. I couldn't have gone there to start with because they had no midwifery care in there but, by that point they could house me in there, so we had our own little room, with our own little kettle, and our own little sink, and I could shut the door and express in peace if I wanted to and I was still expressing because I knew that when I left it was all going to the milk bank so I just carried on [laughs]. Well there wasn't much else to do apart from gaze at my daughter, so might as well and so I did and it kept the milk flow going. We moved in that little room that was fantastic, we had a bit of privacy and space for all my thousands of visitors [laughs] to come and see me. I had to send the flowers home because there were too many and they didn't fit in the room and half the chocolates got left with the staff because there were just too many, hot drinks is the thing to take with you, tea bags and real hot chocolate and things because hospital tea is just so disgusting [laughs], so I took gallons of things like that and then we came home I guess.

How old was she at this stage?

She was a month. And just before leaving the ward I handed the Lactation Consultant a carrier bag full of frozen milk for the milk bank, far more than we'd used and that felt really good, really, really good.

By this stage was she fully breastfeeding?

Oh yeah, oh yes, fully breastfed, and she's never had anything other than breastmilk until we started weaning, no way.

What would you like to say to a pregnant woman who found herself in a similar situation to you?

Get a hold of the book 'Breastfeeding Special Care Babies', borrow it from La Leche League, get to know your La Leche League Leaders, or other feeding consultants, know what you're about before the time comes, have a plan in place, yes you may have to change the plan but have a plan in place, know that you're going to breastfeed, don't think that you're going to breastfeed, know that you're going to breastfeed, and what tips you're going to use to make it work. If at all possible speak to anyone in charge, I mean we had a Cardiac Liaison Nurse who I could speak to before, who knew how important it was to me and if you have someone similar speak to them, tell them how important it is to breastfeed. I wish I'd been able to get that book onto the ward and to the ward staff before I went through it and that might be an idea. Speak to anyone who's been through anything similar, if you can get hold of anyone through any of the heart charities or I suppose charities with other babies with problems, but know in yourself that it is both the hardest and the most important thing you can ever do for your child, forget the right school, forget living in the right area, forget anything like that, the most important thing you could do, especially for a special care baby is to breastfeed them.

What would you like to say to health professionals?

I know that all health professionals who looked after me were doing the best with their knowledge, I think all paediatric intensive care units and paediatric other units that take any babies ought to have knowledge about breastfeeding, have a copy of the book, get training on breastfeeding, have links, know the telephone numbers of the local Lactation Consultants and La Leche League and people like that. I had to look it up, for the Lactation Consultant in the hospital, the local nurses didn't know her number and this is an internal person, they'd not needed it and it wasn't their fault that they didn't know it but they didn't know it, so I think a lot more training could be done in that area and showing how important it is to really support. I think a lot has changed in SCBU units and I think SCBU units are getting a lot better in supporting breastfeeding and I think maybe the next big area is special care babies who aren't in SCBU who are in the general paediatric areas.

Yes I went off to work full-time.

How did you manage that?

With difficulty, in fact when I first went out, back to work after having him I went back on shift, an early shift started at half past five in the morning, a late shift finished at ten past ten to midnight, in the evening, and that was hard work, that was really hard work. 

Did you set up a routine of any sort?

To a certain extent I pumped, because I work in a factory, every two hours is a forced break if you like, the bell rings and we all go out to break and so every break I was pumping. And, I was pumping at home as well, there are several things that I wish I'd known when I started and I found doing the same when I went back to work with my daughter much easier because I knew these things, I knew to express in that first morning feed so you feed on one side, you express on the other at once.

Because?

Because each one stimulates the milk production in the other and he had much, much more and I wish I'd done that with my son but I didn't, and I think I would've struggled a lot less. I wish I'd have bought my expensive breast pump earlier, I bought it about half way through my son's feeding during the day when I was back at work.

What advantage does your expensive breast pump have over an inexpensive one?

It's a double.

So?

So again you're stimulating both, each side is stimulating the other, my cheap electric one, is great, it works, but it's one, and it's just one side.

So it's more time-consuming?

It's more time-consuming and I was finding it very hard to stimulate let-down, very, very hard to get let-down, in fact I almost always wasn't and I was just getting dribbles all the time and not adding up to what he needed, and as soon as I phoned La Leche League and they said, “I think you need an expensive double breast pump” and I got it, and bingo, let-down.

How did you know?

Because the quantity of milk tripled [laughs] quite simply.

Could you feel the let-down happening?

No I couldn't.

Could you visually see the increase in milk flow?

Yes, yes I could definitely see that. But I didn't feel it, I did the second time around as I say with my daughter then it was, in, in some ways I think I was more aware with her so I was looking out for can I feel let down coming, and so I could.

And what did it feel like?

Tingly, like that tingling down the back of your spine when you, someone you love is giving you a massage.

A frisson?

Yeah, yeah rather nice [laughs].

And a tightening in the chest?

No, no, just a tingling that, I knew what was going on.

So, so I just want to get this, this going back to work routine straight, you fed in the morning on one side, pumped on the other, every two hours at work during the day…

Yeah.

…or night whatever happened to be the shift, and then?

And then I would feed again when my son needed it at home.

So what was he doing during the day while you were pumping at work?

He was going to a childminder.

And what was she feeding him?

My milk.

Expressed breastmilk?

Expressed breastmilk, fresh milk from a bottle.

Did he have any problems taking a bottle?

No he didn't, he took it absolutely fine, as long as it's the same stuff inside Mum I don't care, getting him on to cow's milk later that's another story that was a nightmare, but breastmilk from a bottle not a problem at all, and, but also by that stage we were on, starting on solids so of course he was taking less milk during the day and she would fill him up a bit on solids and then I'd just feed him as soon as I picked him up.

On your days off…

Yep.

…did you feed him more or less…

Oh yes.

…or the same?

More, I'd latch him on at every opportunity.

Why?

To get the milk supply back up because I could tell it was dwindling during the week, and I would get more expressing on a Monday than I would do on a Friday and so I'd feed it up again during the weekend. But these are things again that I came to quite late in the day and I wished I'd been doing it when I first went back to work, I think that's quite a shame really that, it took a lot of tears really to get to that stage.

Tears over?

I'm running out of milk he's going to have to have formula.

Where did you turn for support when you felt like that?        

La Leche League certainly, but also my friend the evangelical breastfeeder [laughs] who had had a daughter six weeks before I had my son and she lived just up the road, twenty minutes away, and so we were on maternity leave at the same time, and actually, bless her she'd been expressing as well and she offered me frozen milk to give to my son because she knew how much it meant to me and how much it would mean to her as well.

So you've fed your son the milk from another woman?

I didn't need it in the end, I didn't need it.

But you would have if you'd needed to?

Oh yes absolutely, absolutely, certainly over formula milk, I would yeah, at the end of the day if she hadn't have been there and I'd have run out of milk yeah, I'd have given him formula of course I would, but if I had any other option [laughs] I was going for the other option and I did.

So that must have been incredibly tiring for you, working all week and pumping and then feeding all weekend?

It was but it was also incredibly fulfilling, because every time he was weighed, and every time he grew I knew it was me, and it wasn't [infant formula] or, whoever else make the rubbish they sell, it was me, I grew that [laughs].

How long did you continue that pattern for?

Well I stopped working shifts about two and a half months into going back to work, I'd asked to stop shifts when I first went back and they had problems arranging cover, but as soon as they arranged cover, I went on to day shifts, so that made life a lot easier straightaway.

Did he adapt to the shifts okay?

Oh yeah, he's never had a problem with that he was always a very good sleeper, and actually I never used to feed him first thing in the morning if I was on earlies, I wouldn't wake him up at four o'clock in the morning to feed him. And I certainly, I always wouldn't have fed him at half past midnight when I came home on a late shift either, so actually to him there wasn't that much of a difference, which I think helped, a huge difference to me and my social life [laughs] and my energy levels, massive difference, and as soon as I knew actually that I was coming off shifts we started trying for another, because we always wanted more than one and we wanted them close together.

How much was he feeding at that stage?

Well I was still expressing so he must've been on a morning feed, a night feed and one bottle during the day of my milk. And at the weekend, I mean this is the way it is with my daughter at the moment, it's a morning and night and then during the week they'll get, she'll get one bottle or, or although if I'm there she'll probably get two feeds, because we'll structure the day slightly differently, so he must've been about the same and fairly quickly I fell pregnant.

How did you cart the milk around?

I have an insulated sandwich bag [laughs] and I would put a frozen thingy in it, but I also much more, there's a fear about it recently because I've read various research papers telling me how little contamination can happen in breastmilk because the antibacterial properties are so strong and so I'm afraid I'm not quite so good these days.

What's your understanding of how long it can be out of the fridge?

I know what the government says, the government says it shouldn't be out of the fridge for longer than an hour, I also know that studies have shown that after eight hours of breastmilk in an open saucer on the side, in a standard house, there's less bacterial activity rather than more and so I throw the government regulations out the window I'm afraid [laughs].

On average how long would it be before you would get your milk from expressing to the fridge?

When my children were younger I would get it to the fridge in, within the hour, definitely, now they're both at the stage of eating carpet fluff it may take a bit longer because I've been known to leave the breast pump in the bedroom after expressing at night by mistake, find it there in the morning, “Oh dear never mind it'll be fine”.

And how long do you keep it in the fridge before you freeze it?

Again the regulations say twenty-four hours I'm quite happy up to three or four days personally.

And how long do you keep it in the freezer once it's frozen before you discard it?

Well that depends if it's going to the milk bank [laughs] less than three months because they need it within three months of course.

And she was put straight on my chest and she suckled in delivery I'd been very clear about that, when the initial diagnosis [of the baby's heart trouble] had been made I'd said, “What about breastfeeding and delivery?” it was almost my first question and they said, “Oh yeah no problem, no problem at all”, they needed to fit a drip to her within the first hour of delivery but plenty of time to feed at the breast, and the consultants were very keen that I should, very supportive and, yeah I'd made it quite clear to the midwives [laughs] and so, out and on, straight on and yes she suckled straightaway.

Another magic moment?

Absolutely, another magic moment, pure magic. Tainted a bit by the knowledge that she was soon to be taken away but still magic. So then she was taken away, checked over, brought back quickly.

She suckled okay?

Oh yeah, she suckled fine.

So she suckled okay at that first feed?

She suckled fine you wouldn't have known anything was wrong she looked quite normal, the SCBU nurses took her away, took her into SCBU where she was three times the size of any other child because she was born eight pound ten, and boy did she need, need every ounce of it, they fitted the drip and then because SCBU was full she moved up into the Cardiac Ward, the Paediatric Cardiology Ward. I on the other hand was waiting to be sewn up, because I had this huge third degree tear, and so picture this if you will I was laying on the bed, I was expressing on the one side by hand, the midwife was expressing on the other side [laughs] and trying to suck off the colostrum with a syringe [laughs] desperate to give my baby what she needed expressing colostrum is the hardest thing I have ever done, it's just so hard, it just doesn't come, it's not made to be expressed. And we got about one ml, no, one ounce out I think, over about an hour and a half, it was incredibly hard work but we chatted and we laughed and, the anaesthetic worked [laughs] but it was quite clear that I wasn't going to be able to express enough for her, she couldn't come back out of the Cardiology Ward and because I'd had an epidural they weren't prepared to release me from being checked over regularly by a midwife until all my bits and pieces were working properly, quite rightly. And so that's when I requested milk bank milk for her and initially I don't think SCBU were very keen, I think it's a very tightly controlled supply they don't have enough. And they relented and gave it to her and I was very grateful and I think the next couple of nights she had milk bank milk and during the day I would get wheeled over because part of the problem was I was in a different building, I was in the Maternity Ward because I was still recovering after, you know, a trauma, a very traumatic birth and she was in the Cardiology Ward, I long for the days when one can have a specialist mother and baby unit where we could both have been looked after in the same ward, I understand the difficulties with that but that would be lovely. So I'd get wheeled over in a wheelchair, and I'd feed her, except the first time I went over I couldn't do it, I physically couldn't hold her, I was too exhausted to hold her up. Thinking back on it now I should've said I need a bed, and I should've taken her into the dayroom, wires attached, and I'm sure they would've done it actually, and laid down to feed her, or insisted that someone came to held, hold her but, you know, they're busy and whatever, the problem is I was exhausted, I didn't think of it, and they're paediatric nurses not neo-natal nurses, so they're not trained in breastfeeding either. They were immensely supportive but obviously lacking in training and knowledge, they had no idea about the impact of bottles, and I didn't even think about it till after they'd been giving her a bottle for two days.

Right, I want to just look at the company's perspective on this for a little bit, the workplace…

Mm-hm.

…and the breastfeeding mother, what have you got to say about that?        

I'm lucky, I think, I have a female boss, who failed to breastfeed her son and her daughter, but knows how important it is to try and succeed. Also because I work in a large company we have an Occupational Health Department who have rooms, who have fridge's, all the rest. So it was kind of, I said I wanted to do it, and you know I'd read up on it, I knew the, I knew my rights [laughs] and I asked them and they just said, “Oo are you allowed to do that?” and I said, “yes I am” they said, “oo okay then”, and I taught them, and in fact after I did that one of the nurses, after having a baby and going back after maternity leave also expressed at work and told me that she didn't know, she wouldn't have known she could do that unless I had done it.

Has it spread any further, it's a large company you're talking about?

No, one of my things at the moment is I'm trying to persuade them, they send out, when you say you're pregnant they send you out a letter saying, “These are your rights, this is when you, you have to tell us when you're leaving, this is when you have to tell us if you're coming back, this is how long we hold your job open for” that sort of stuff, and I've asked them, and I'm not sure that it's got through to the right person yet, to put a sentence, just one sentence on that, “If you wish to express breast milk for your child when you return to work please contact Occupational Health” that's all it needs, because that then just triggers the thought in the mothers' minds.

They haven't done it [laughs] but I'm pretty sure it hasn't actually got through to the right person yet, because I think it's been the same standard since about nineteen seventy-three so you know, it's just getting through to the right person and then I'll try and get that changed because I think that'll be really good, but yeah we've got a fridge, there are rooms where people go to see nurses and they'd let me have one of those rooms, my boss was very supportive and yeah you need to tell, you take the time.