When the Senior Registrar came to check out the baby he had a look in his mouth and I think it was impossible to miss if you'd looked because he had a massive midline cleft palate which basically means he didn't have a roof to his mouth, it wasn't that there was a hole in his roof, there wasn't a roof to his mouth. But the reason my husband had thought this wasn't actually even because he'd seen the mouth but because of the struggling that my baby was having in breathing. And he had a very little chin and he was really struggling, and my husband thought actually on delivery that he had the syndrome called Pierre Robin, which is a pretty rare syndrome; it took us five weeks to get that diagnosed and confirmed.

I mean in the first five weeks we went to five different hospitals and it took to five weeks for us to get to [children's hospital] and that was such a moment, it's incredible how knowing what you're dealing with makes a huge difference or to be honest being listened to because my husband had thought in the delivery suite that my son had Pierre Robin and when we walked into [children's hospital] the nurse there said, “Ah a Pierre Robin baby”.

It took until we walked into [children's hospital] for the fact that our son had Pierre Robin to be acknowledged and it was such a relief to have other people believe, believe us or engage in it. And the nurse was able to diagnose him just on the basis of his cry, because apparently his cry was so specific for a Pierre Robin baby and I thought, 'We're in the right place, if they can recognise his diagnosis just from his cry then they knew', I knew we were in the right place, and there was a lot of relief that came with the right diagnosis. 

For the first few days everything that my first son ate, it was my milk going down a tube into his tummy but then we started to introduce a special squeezy bottle which was for, for cleft babies who don't have any suck, you actually psychically squeeze the milk into their mouth. But the trouble is it, it was like walking on eggshells because you had to squeeze just when he was ready for it without overwhelming him. And he screamed through feeds and he choked through feeds, and he was so unhappy, and he was in so much discomfort, and life was such a struggle for him it was really, really tough. A few weeks in, a real turning point was when this wonderful Speech & Language Therapist taught us about something called side lying, and it's incredible how one little thing can make such a world of difference. Basically I've got a pillow and a doll, rather than try and feed him like this, where if there was too much milk going into his mouth, it was choking him, he was being overwhelmed because he wasn't sucking the milk out of the bottle. I was having to actually squeeze it into the bottle. She taught me side lying. So he was actually lying and we always put something down because it was, it would drip everywhere, but he was relaxed and I would be able to hold him and relax and stroke him, and this was where the bottle was here, and I would have the bottle and I would squeeze the milk as he was sucking, so I was very much kind of responding to his, what he was doing, it was the most incredible silent dialogue between the two of us, so I would squeeze and he would suck, so it was a communication totally different to a normal kind of breastfed situation [laughs], but it was very much our time and we did get to a point where he would, he would occasionally choke but not so much because what would happen is if I squeezed too much, and if I was watching for every suck, well he thought he was sucking but nothing was actually sucking, if there was too much it would just pool in his cheek and end up here. So I definitely, whatever I expressed for him, about a third ended up on the mat [laughs] but at least he wasn't choking and that made such a difference, and we began to get to a point where feeds were less arduous. But, what I had to do was express and feed him, feeds were taking an hour and a half, the expressing was taking forty minutes, I know that I would have probably gone insane, or given up, or something if I hadn't tracked down a special bra from America which meant that I was, that I'd be sitting here expressing and the bra was holding the pumps in place. And I was expressing milk for the next feed while feeding him for this current feed and we basically had a production line [laughs] going where I was making for the next or to be honest quite early on because I think I was double pumping and properly emptying the breast I was getting ahead of the game. It was really important to me that I would get ahead of the game and have some in the freezer, because I didn't want to have the pressure of running out or nearly running out. When you're expressing eight or nine times a day you're having to sterilise that many times a day, so it was this phenomenal production line [laughs] and if it wasn't for my family, my husband, my Mum, my mother-in-law here helping with the sterilising, helping with everything around me peripherally, I'm sure I wouldn't have been able to stick it for as long as I could have. And also the bra did make a huge difference because I, when, when he was sleeping and I was still expressing I would be able to sit on the phone, catch up with friends, because it can be very, very isolating and I know I would have gone and probably would have lost it if I hadn't been able to stay connected with friends.

I've got two boys both of whom have received lots of their Mum's milk, but it was a very un-straightforward journey. Both were born with cleft palates, so my first son never was able to breastfeed but I breast, expressed all my milk for him for a long time and my second son, I expressed for him for many months and then post-op he ended up becoming a breastfeeding baby.

When my first child was born four weeks early and things were very medicalised and very tricky from very, very early on. Because in the delivery suite there was a paediatrician present because he was early and the Senior House Officer checked him over and kind of said, “Congratulations you've got healthy baby boy” and my husband who's a paediatrician knew something was wrong from the start said “I don't think so, could you call the registrar?” So my heart just kind of completely, I'll never forget that moment. So there was nothing normal or straightforward about those early weeks and in fact months with my first son.

Can you go into a little bit more about that, what happened?

When the Senior Registrar came to check out the baby he had a look in his mouth and I think it was impossible to miss if you'd looked because he had a massive midline cleft palate which basically means he didn't have a roof to his mouth, it wasn't that there was a hole in his roof, there wasn't a roof to his mouth. But the reason my husband had thought this wasn't actually even because he'd seen the mouth but because of the struggling that my baby was having in breathing. He had a very little chin and he was really struggling, and my husband thought actually on delivery that he had the syndrome called Pierre Robin, which is a pretty rare syndrome.

It's all a bit of a blur, I have images of him on my breast because that's the first thing I did after he came out and I think that was maybe even before the cord was cut, I actually don't remember, but I've got these images of my baby on my breast, before which you could call it skin-to-skin.

I mean, he never latched, he never could latch, he never had any suck, it wasn't even like he had a reduced suck, without a roof to his mouth there was no suction that he could create, no negative pressure. But I've got these beautiful images and I don't know whether that was before or after we found that he couldn't. All I know was that I've got those photos because it was always my plan, as soon as my baby was born there was going to be wonderful skin-to-skin and then he would breastfeed [Sighs]. I mean it was to say a bombshell you know, is nothing your world collapses in on you. My world I guess doubly collapsed in because not only was my world falling apart but my husband's was, and just to see the devastation on his face. Sometimes knowledge is not such a good thing, because with Pierre Robin comes with, often a lot of babies with this syndrome have a lot of other problems as well. We are very, very lucky, my son is perfect in every way except that he had no roof to his mouth when he was born and he has some hearing problems associated with that so he wears hearing aids now, but there are no other medical or physical problems, but we didn't know that at that time. 

So we were, it was all a blur and it was all heavy, and it was all dark, and it was very, very difficult. I had this incredible, immediate, intense bond with my baby and I'm so lucky that that happened and that we had that, and that was unquestionable and unshakable. But it was very, very hard for my husband because, that [sighs], it's difficult to say this because, he couldn't love my son more now but that wasn't a love that wasn't as instant because there was too much worry and too much stress going on in that early period. But I remember all I wanted was to have him here, when we would lie next to each other in the room it was interesting it was only four and a half years ago but you feel almost a bit guilty about having them out of the cot and with you, but when we'd curl up like, sat like spoons, him kind of in front of me it felt like he, I could almost feel that he was still in me that we were almost physically still connected. But I always felt I was being naughty and I should put him back in the cot, than sat by the side of the bed which is such a shame, but I did I was naughty on a number of occasions and we had special hugs. But it is interesting because the more I know now the more I realise the more skin-to-skin you can give your baby the more special it is for both of you. So basically [sighs] the first day, the first few hours I started expressing so I don't know where that came from, I think maybe I just knew because I'd read stuff or it might be that there was someone key there at the hospital who got me going. I do remember being left to my own devices to a fair amount and it was one of those big old-fashioned pumps with the big glass chamber and I didn't know that it was a good idea to do a bit of hand expressing first or a bit of massage to help the milk flow. I knew I had to make volumes, I had no idea how little colostrum there was in the first few days and so I overdid it. I basically tried too hard before my milk had come in. And I think it was the first night or the second night I was in, I'd made myself sore in a way that you never should with a pump because you should never pump at a level where it's painful it should be just until the milk flows. I know this now but I didn't know it then and that's when my big sister came into play, she was in my room gone midnight helping me because I basically, I'd got sore nipples. I thought I'd blown it, that was my attitude. I think it was probably maybe day two or day three, that feeling you've blown it, you've wrecked it, it's gone, you've got sore nipples, they're scabby, they're painful and you're not going to be able to ever express or breastfeed again. So she got me back on track and for a few sessions I used the hand pump which just gave me a bit more control but then I learnt actually, I don't how early on, but fairly early on that double pumping was the best way.

What do you mean by double pumping?

When you've got a baby who cannot breastfeed, you can give them your milk by expressing it for them and it's called exclusive expressing, and it means that you are taking milk from your breasts using a pump as often as the baby would feed. And if you do it as often as a newborn would feed then your milk will come in the same way and you will be able to have enough milk for that baby for as long as you want to express for.

So how often is that?

So about eight or nine times in twenty-four hours I was expressing and it was really important that I did one in the middle of the night, because that's when the prolactin levels, the hormone levels are highest, so sometimes a bit of a killer when the baby was sleeping to wake up and express but I really knew how important it was. I discovered that double pumping was better than single, so rather than expressing off one side and then expressing off the other, it's better for yield and fat content if you can express from both sides at the same time. I guess a Mum who's feeding for twins, she makes enough milk for twins and it's probably sending all the right signals to the body. And if your baby isn't feeding from the breast they're not stimulating the nipple in the same way and you need to help your breasts in every way you can so double pumping is something really important. I mean, I was very lucky because I had my first at a hospital which has a milk bank so there's a lot of experience there and I was able relatively early on to tap into that. Before my milk came in, I was making from the very first day, but we're talking five ml's, ten ml's, twenty ml's I've got all the charts, I've kept them all.

Can you remember what that looked like, that colostrum?

Oh yes, I used to call it 'gold dust', I used to call my colostrum gold dust because it was, and it was like gold dust in every way, it looked gold, it was so rich and it was so precious because I worked so hard to make it and you could, I could see it. I guess with a newborn baby normally all that wonderful rich gold dust, it's like magic in terms of the immuno properties it gives to the baby. It normally goes straight from breast into baby and you don't normally see it but because my baby couldn't feed from my breast I was making it for him and then giving it to him through a tube, a special tube through his nose and into his tummy. But I could see this gold dust and I was so proud every time I would make it and feeding it down into the tube which then came down into his tummy. But it was a really difficult decision, because there wasn't enough milk for me to give to him before day three because the paediatrician's were involved, this was not a well baby, there was a lot going on, he was struggling breathing, he got an infection, they were dictating how many ml's he would need. With a normal baby the mum makes enough, if you know, we are a dyad, the baby and the mum, but it was a different situation and I wanted to get hold of some donor milk because I knew that it was possible and normally they don't give donor milk unless it's a very sick premature baby, but all I wanted was donor milk for two days or three days until my milk came in. It certainly wasn't the standard but they got me some, a little, little vial of it. But then the wrong doctor came in with the wrong information [laughs] because I suddenly panicked about diseases, that, you know, maybe there was HIV, maybe there was this, and the truth is it's pasteurised, it's checked, it's safe, but the person I asked didn't know and they gave me that level of doubt they said, “Oh yes I don't know, I wouldn't be so sure”. And so this precious little vial and I always feel bad about this, for everyone, for the mum that donated it, and for the premie baby that might not have got it, and for my son who didn't get it, sat by my bedside as I dilemma'ed and defrosted overnight and it ended up having to be thrown away, which is a terrible, terrible shame but in the end I've ended up being a milk donor and I understand so much more and I understand how safe it is and how special it is. 

For most babies, breastfeeding, is such a special time, it's associated with a closeness to a mum and a warmth in the belly and I knew that my son couldn't breastfeed but I at least wished that he would get some comfort from feeding because I wanted it to be a nice time. It was my milk going into him and I wanted to nurture him. So it was a very, very, very tough few months because he very much struggled to breathe and feed. Newborn babies normally manage very easily to suck, swallow and breathe and to co-ordinate these things but he didn't have a chance because he had the syndrome called Pierre Robin. Many cleft palate babies just have a cleft palate, many cleft lip babies just have a cleft lip. They don't have associated breathing problems, but my son had this syndrome as well called Pierre Robin so it was a real struggle to feed him. Every feed was like walking on ice, every feed was like walking on eggshells, it was very precipitous. Every feed was like walking on eggshells, he could so easily choke and did, you know, we did have studies done at the children's hospital and the milk was going down the wrong way. An amazing thing that we learnt that, you know I'd like to demo this because I think it would be such an asset (see Interview 13 above for video clip).

For the first few days everything that my first son ate, it was my milk going down a tube into his tummy but then we started to introduce a special squeezy bottle which was for cleft babies who don't have any suck. You actually psychically squeeze the milk into their mouth. But the trouble is, it was like walking on eggshells because you had to squeeze just when he was ready for it without overwhelming him. And he screamed through feeds and he choked through feeds, and he was so unhappy, and he was in so much discomfort, and life was such a struggle for him it was really, really tough. A few weeks in a real turning point was when this wonderful Speech and Language Therapist taught us about something called side lying, and it's incredible how one little thing can make such a world of difference. Basically I've got a pillow and a doll, rather than try and feed him like this, where if there was too much milk going into his mouth, it was choking him, he was being overwhelmed because he wasn't sucking the milk out of the bottle I was having to actually squeeze it into his mouth. So he was actually lying and we always put something down because it would drip everywhere, but he was relaxed and I would be able to hold him and relax and stroke him, and this was where the bottle was here, and I would have the bottle and I would squeeze the milk as he was sucking, so I was very much kind of responding to his, what he was doing. It was the most incredible silent dialogue between the two of us, so I would squeeze and he would suck, so it was a communication totally different to a normal kind of breastfed situation [laughs], but it was very much our time and we did get to a point where he would occasionally choke but not so much because what would happen is if I squeezed too much, and I was watching for every suck, well he thought he was sucking but nothing was actually sucking, if there was too much it would just pool in his cheek and end up here. So whatever I expressed for him, about a third ended up on the mat [laughs] but at least he wasn't choking and that made such a difference, and we began to get to a point where feeds were less arduous. But what I had to do was express and feed him, feeds were taking an hour and a half, the expressing was taking forty minutes. I know that I would have probably gone insane, or given up, or something if I hadn't tracked down a special bra from America which meant that I'd be sitting here expressing and the bra was holding the pumps in place. And I was expressing milk for the next feed while feeding him for the, this current feed and we basically had a production line [laughs] going where I was making for the next or to be honest quite early on because I think I was double pumping and properly emptying the breast I was getting ahead of the game. It was really important to me that I would get ahead of the game and have some in the freezer, because I didn't want to have the pressure of running out or nearly running out. When you're expressing eight or nine times a day you're having to sterilise that many times a day, so it was this phenomenal production line [laughs] and if it wasn't for my family, my husband, my Mum, my mother-in-law here helping with the sterilising, helping with everything around me peripherally, I'm sure I wouldn't have been able to stick it for as long as I could have. And also the bra did make a huge difference because when he was sleeping and I was still expressing I would be able to sit on the phone, catch up with friends, because it can be very, very isolating and I know I probably would have lost it if I hadn't been able to stay connected with friends. 

When you're expressing that many times a day and you're dealing with a baby who you just want to be happy and is struggling so much, he was also suffering, suffering a lot from reflux and there was various medication he was on and various investigations. I mean in the first five weeks we went to five different hospitals and it took to five weeks for us to get to the children's hospital and that was such a moment. It's incredible how knowing what you're dealing with makes a huge difference or to be honest being listened to because my husband had thought in the delivery suite that my son had Pierre Robin and when we walked into the children's hospital the nurse there said, “Ah a Pierre Robin baby”.

It was such a relief to have other people believe, believe us or engage in it. And the nurse was able to diagnose him just on the basis of his cry, because apparently his cry was so specific for a Pierre Robin baby and I thought 'We're in the right place, if they can recognise his diagnosis just from his cry then they knew'. I knew we were in the right place, and there was a lot of relief that came with the right diagnosis. He was still having a very difficult time, but I was absolutely determined to express. What I originally made a plan with my husband for was I would do it for three months and then we would review. I know that I knew from the beginning I wanted to give him my milk all the way to the operation, and for normal babies there're wonderful benefits for breast milk, but for a cleft palate baby I had read and I understood all the extra benefits. They have a high incidence of glue ear and breast milk has been shown to help with that. The milk was going down the wrong way into his lungs, he never got a chest infection and I am pretty confident that that is because it was my milk and it's much more physiological, the body's more used to it than if it were formula. Everything he ate, well in those first few months he was just having milk, everything he drank went up his nose because there was an open hole between his nose and his mouth and I'm sure it would have been much more irritating if it had been formula. 

That all the physical stuff, what about emotionally for you?

Everything around me was out of my control, we were in a hospital, it was doctors, it was tubes, it was drips, pricks on his heels for sugar levels, you know, so much was happening and we were out of control. Expressing was something I could do, it was a difference I could make, it was something I could focus on for me and for him and for our little family, so it meant so much to me emotionally as well as the physical benefits of breastfeeding, that raw need to give him my milk and make a difference.

It's funny it's been so long since I've really looked back and you forget how far he's come. You look at him now he's just this boisterous, bright, lovely wonderful four and a half year old off to a trip to the zoo today and I look back and I just think he is an amazing, amazing young man because he had such a difficult start and he had so much to fight against and he really, really struggled and because of that we were struggling around him, but the expressing was something I was going to give a full go. I promised my husband I would review it at three months because he was worried that it was all too much for me and so we got as far as three months and then I thought 'Okay well we're going to the op'. What I was trying to do meanwhile was build up enough stores in the freezer so that if I couldn't make it to his operation with the expressing that there would at least be enough milk in the freezer for him around the time of the op because I knew of all the wonderful immunological factors in the breast milk that would gave him extra immunity around the op, but actually I made it there and beyond. And there was a point actually where there was no room for any ice-cream in the freezer because it was so stacked full of all my breast milk. I was able to donate some to the milk bank and that meant a huge amount to me to be able to give something back. But I think that I kept sane because I didn't lock myself away. 

I made a decision very early on if I'd had a breastfed baby, a baby who could feed from my breast I would have fed him anywhere, in my lounge, in my mother-in-law's lounge, in the supermarket, you know, well anywhere really. Breastfeeding is normal, it's natural and I would have fed him anywhere. So because I had to express I didn't see why I should have to lock myself away and do it in private, if you have to do this eight or nine times a day I felt for my sanity I needed to still have friends around me. It's funny, I didn't think about it at the time and I look back and I just think 'Oh my goodness' because I had this special expressing bra which meant I would double pump hands free. I didn't even think that I was doing anything other than wearing normal clothes when I was wearing this get up. People would come to the door, I've opened the front door in it I mean, slightly hiding behind but people would come in. The number of visitors I've had in this lounge while I've been sat here, not sat here like a lemon holding it in place but relaxing with bra on and double pumping. And it kept me in touch with my friends.

In the middle of the night when my baby was sleeping but I had to get up to express I would read all the Harry Potter books and that kind of kept me, like I was doing something for me, it became my quiet time. So it ended up just part of my life, just I guess like breastfeeding ends up a part of one's life. There was bit more work involved, I did often wish I could cut out the middle man, rather than my breast, the pump, and then into this special squeezy bottle into my baby, it would have been so much easier to have just been able to put the baby to breast but that wasn't going to happen. He only had my milk, as in nothing else, until I loose track, I think it was eight and a half months? But I certainly expressed for him until he was ten months. It took longer to stop than I thought. I had such a wonderful good supply going I couldn't just go cold turkey, a baby would normally wean naturally but with an exclusively expressing mum you're having to simulate what the baby would do, so I had to drop expressing every ten days. The only thing that really made a difference with my supply was when I stopped. I went away for a week and when I thought I'd nearly stopped and I was only expressing once a day, but I had with me just a hand pump and that didn't, for me, drain the breast in the same way, I got quite a lot of RSI, and couldn't manage to do it as much as I had been doing it, and that was the one thing that really helped my supply cut down, but it actually took me well over a month to probably two months I think to stop completely.

Was, was your son offered a prosthesis at any time?

My son was very unlucky to have been born on the Friday of a Bank Holiday weekend, so we didn't get to see a Specialist Cleft Nurse until the Tuesday. Didn't get to see a squeezy bottle until the Tuesday, didn't really know what a squeezy bottle was until the Tuesday, although the truth was because of his breathing problems he wouldn't have coped at that stage anyway, and looking back actually he could have probably done better being tube fed for a lot longer, he really did struggle with a squeezy bottle. By the time we made it to [children's hospital], he was too old to have tolerated and responded to a, I think they put a little thing in their mouth like a prosthesis, like a pretend palate.

But also he had such a huge palate I'm not sure it would have worked anyway. It took me [sighs], it's funny here I am talking about how I knew I was exclusively expressing for him, it took me weeks if not months to acknowledge that he wasn't going to be able to breastfeed. I would often put him to my breast before or after, I would hand express into his mouth, and I, because, it's interesting there seemed to be two lots of literature out there, a lot of literature which just said you can't breastfeed a cleft palate baby, which I just found was too negative, too all, you know, assuming what is impossible, and then I found this one, a whole lot of wonder literature that talked about what is possible and the truth is lots of cleft palate babies can breastfeed. Some, especially cleft lip babies because you can just put a seal on the lip and they can feed, and often if there's a discreet hole in the palate they can breastfeed, but my son had a massive hole in his mouth and it wasn't going to happen and I guess I wish I'd had external support to bring me to that realisation sooner because I put him through a lot, you know, he became quite breast averse because he would just get squirted in the eye [laughs] with all my milk while I was trying. I realised I wanted him to get comfort from me. Once or maybe twice he fell asleep at my breast not having fed but that was just something that I held onto so much. I used to find it very, very painful being at regular Mum and Tots groups, seeing people breastfeeding. It was very much like as if I had a baby and he was growing, and he was, I wouldn't say he was well at this time but he was with me. To use the word grieving seems terrible when people do lose babies, but it felt like a grief, because it was a loss of something that I had so wanted to do and was very important to me.

Can you explain about the operation? What is the operation that a cleft palate baby might go through? And when does it happen?

I knew and it was incredible how comforting it was to know very early on within five weeks when we got to [children's hospital] that when my son was six and a half months old that was when he was going to have an operation. And it was really helpful to have that date in my mind, I knew what I had to work for in terms of expressing for him but I also knew what we were leading up to. And I think the surgeons are miracle workers because what they do and what they ended up doing is creating something from nothing, because you would look into my baby's mouth, if he would cry and there was no roof you'd see straight up into his nasal passages, but actually all the right bits, the muscles, the skin were there but very much around the teeth area, and what the surgeons do or the surgeon, and he is superb, is cut it all and pull it across, and pull the muscles across, and the skin layer across, and create a palate where there wasn't a palate. Now that, those muscles have never been together they've never worked together, so the reason they do the op early is before babies start to make too many sounds, because the idea is you want them to have normal speech and language, and lots of cleft babies do end up needing to have quite a lot of speech and language therapy, and do end up having to have subsequent operations. We've been very, very lucky and our little one has got wonderful speech and only needed one little additional operation. The operation is [sighs], I don't know, probably the longest two and a half hours of my life, having, I mean any Mum who's had to put a baby through an op, having to be there when they're going under the anaesthetic and then having to leave them when their breathing suddenly changes when they go in that deep [sighs] sleep. But it made a lot of difference to him, because he was already on solids pre-op, so before his operation, because they hadn't yet introduced the weaning at six months recommendations, I think it was about five months that we introduced solids, so for a month and a half he'd been eating and everything he ate came out his nose. I haven't looked back at video but I look back in my mind's eye. Carrot coming out, mushed up carrot coming out of one nostril, mushed up courgettes coming out of the other nostril and he was actually, he found it fine because he didn't know any different.

So he was able to swallow enough to keep him alive?

He actually found solids much easier than milk, because it was easier for his muscles in his mouth to co-ordinate, because there's more substance to it to kind of make sure it doesn't go down the wrong hole, whereas with milk and liquids it was always an issue. I mean, when he was sitting and drinking everything would come out of his nose as well, but I remember how strange it was post-op. Well the first thing I remember post-op was his cry, it was the strangest thing, when I went to meet him in the Recovery Suite I didn't recognise him. Because, his cry had changed, because they had changed the acoustics in his mouth because they had created this palate where there hadn't been a palate. So it is amazing what they'd managed to do and how much easier life became for him because, you know, we assumed that it didn't bother him all this stuff coming out of his nose but it must have been just a constant source of irritation, but he'd had so much else to contend with, he's a very stoic little boy, he doesn't complain, he falls over, he's a real brave one and I think probably because he had so much to contend with when he was little he's kind of learnt to be kind of quite strong.

After the operation did you try to put him to the breast at all?

I did have this fantasy that after the operation, if I could keep my milk going till after the op, not only would he have benefited from my milk but we might be able to breastfeed. And I did try, quite a few times, but the truth was, it was more for me than him because it, he well he didn't get the comfort from being at the breast, he didn't know what it was for, what it was about, what he needed was cuddles and I gave him plenty of those. And it was sort of a second moment of mourning when I realised that it was never going to happen but I could give myself a lot of comfort from all the goodness I'd given him. My goodness, most of these Pierre Robin babies when you see them go into theatre, they're scrawny little things, they generally are not strong babies because they generally have such a tough time taking in any food and liquid whereas mine [laughs], he's quite beefy even pre-op, and I felt quite proud that all of that had come from me, all apart from the first few weeks of solids that we were just beginning to introduce. So I knew I had done all I could for him and that was very kind of curative, that was very empowering because it was a tough six months the first six months he'd had and into the first year, I mean to be honest you look back and you just think 'how this can be the same boy' because he's doing so well.

How did his weight gain compare with a normal breastfed baby?

At the beginning he was beginning to fall off the weight charts and he did get, he was very poorly, but then he caught back up and he did very, very well. He did as well as any breastfed baby, and as well as any bottle fed baby, formula fed baby but it was all on my milk and it had all of that wonderful, wonderful magic properties of breast milk.

Okay, so let's move on then to your second baby.

Falling pregnant having already had a baby with problems is complicated, there's all the joy of the pregnancy, there's all the fear of what might come, and the uncertainty of knowing. We had so many tests second time round, because having already had a baby with a cleft palate our chances of having another baby were one in twenty we were told. So I had lots and lots of scans and I had a dodgy nuchal scan [ a screening test for assessing whether your baby is likely to have Down's Syndrome] so I had to have investigations but we were told as much as they could give any a hundred percent certainty that everything was fine. I actually found out the sex of the baby and I don't think I would have done that otherwise and the reason was because I wanted to get my head around what it was going to be so I could focus in on it. 

I very much hoped that second time round I would be able to breastfeed. And once again, four weeks early I went into labour, so I don't seem to be able hold in my babies for more than thirty-six weeks [laughs]. We had booked into a really good teaching hospital because there was still that doubt in my mind even though we'd been given pretty much the all clear, and on day one we had our worries. I couldn't tell if my baby was latched without looking, you know, people talk about this toe curling latch, I know if you get a good latch then it shouldn't be painful once the baby's on but at that first moment, I had to look to see. My husband had a look in his mouth and he thought he saw like a translucency almost like a bit of a window to the roof of his mouth and he thought he saw a bifid uvula, which is, you know that wiggly bit if you're a cartoon character, rather than there being one bit, he thought he saw a split in the middle. But various doctors came in and they checked, and they did what they probably shouldn't have done, which was rather than refer us on they gave us absolute reassurance that everything was fine. But events took over because he was feeding very, very poorly, we got discharged, I'm not quite sure why we were discharged but he came home and actually sat just over there in that sofa, he slept all day and I was trying to hand express into his mouth, we couldn't get anything down him. We went back in, we got admitted to Transitional Care, having been to Intensive Care briefly and he kept on losing his temperature, and he kept on not feeding, but then doing okay-ish on a feed. Everyone wanted it to be okay, they knew about my first son, my husband was a paediatrician, they knew my husband and I think everyone wanted it to be okay, so it took until eight days for them to do the lumbar puncture and that's when they found out that he had viral meningitis. So he was a very, very poorly boy by here. Any issues about whether he had a palate became secondary because we were just talking about would he pull through and how would he be? I was also ill, it took them quite a while to figure out that I had what he had, but a different form. And actually I had this virus called an eco virus and I had either given him the meningitis when I had given birth to him, or on delivery, or maybe I had gone into premature labour because of the virus that I had. But I was being investigated for all sorts of things and people weren't kind of connecting the two, so it was a very, very difficult time. And it was really hard for my first son because we were in hospital for just over three weeks, but they looked after my baby very well, I thought it was ironic but also good that the incubator that he was in was one that had been donated by Bliss which is a premature baby charity and that's one of the charities that I support so it felt kind of comforting.

When my baby was recovering from the meningitis I was putting him to the breast, it was all I ever wanted to do was be a breastfeeding Mum but I was also expressing, but I felt he wasn't able to empty my breasts and I felt that he could only take from them when they were full and I felt he would fall off, I was actually sort of having to hold him onto the breast and I was kind of limited on my use of the pump, they were kind of rationing me, I felt a bit like a naughty schoolchild every time I asked to use the pump, and I'd very proudly come back and say, “I've only expressed for three minutes”, and then I'd come back with like a hundred and eighty ml's. So I had a really good supply going. Finally when we were discharged I was told, “Just go home, be one-on-one with your baby, loads of skin-to-skin, feed on demand”. And by that point I so wanted to believe them that I kind of fell into the fantasy. I went home and for five days I fed my baby day and night, he was on the breast for more than one in every two hours and I didn't mind anything in terms of sleep because I was breastfeeding and I was doing the right thing by him and I know with a normal healthy baby if they're breastfeeding well it will sort itself out. On the Monday we took ourselves off to [children's hospital] and we saw the surgeon at [children's hospital]. He took one look in my baby's mouth and he said, “Classic sub-mucus cleft”. This means he was a little con artist, he had the skin layer but none of the muscles behind and there was a dent in the bone as well. So although it looked like he was fine, in terms of his speech, how it would have been if we hadn't spotted it, he hadn't been operated on, it would have been as bad as a baby with no roof to his mouth and almost as devastating, although it does sound strange because there's nothing more devastating than having a baby potentially going to die of meningitis but having got through to then find that my milk had gone, it felt almost as devastating it was one of the most stressful periods of my life. Because I had been advised not to express, I think in the hospital they thought I was hung up on my expressing bras, or was hung up on pumping, or just didn't have trust in my breasts to make enough for my baby because now I know because I've done some training that the breasts will always make enough.        

The first thing I did when I went home was express and I found that I had no milk. My milk had gone. Basically my breasts had shut down because for the previous five days he was feeding but he wasn't feeding, he wasn't draining the breasts, and there in the hospital they were worried that I didn't have belief in my breasts, because the truth is that if the baby's normal and healthy then there will always be enough milk because it's this natural bio-feedback loop “the baby takes the mother makes”, but he wasn't taking and so I wasn't making and I'd stopped making and all that expressing I'd done before when I was being proud and not expressing for too long, I'd actually just been taking off the foremilk, leaving my breasts basically full or engorged enough to send the signals that there is no baby feeding from my breast, so my milk had gone. Now this is like the queen of expressing, had no milk and to be in the situation of, I mean it was utterly devastating, I was so angry, I was so angry at them, but I was more angry at myself for believing them, because I would have expressed, the only reason I stopped expressing was they thought I was hung up on expressing and they thought there was no reason why I couldn't be breastfeeding. I should have stuck to my guns and listened to my instincts more.

What did you do with that anger?

Channelled it into expressing [laughs]. It was a really, really hard time, there was a whole lot of milk that I had made at the hospital that was on it's way to the milk bank, we're talking litres, I had to haul it back here to the freezer and my job was to get my milk supply up again before that supply ran down. Now if I hadn't done what I'd already done for my first son, there's no way I would have known that you can exclusively express long term. Fine one thing, but you can relactate, but by this time I'd already done a fair amount of reading, I'd set up Express Yourself Bras, I understood a fair amount about expressing and I was in touch with this fantastic breastfeeding or infant feeding advisor and researcher up in the north of England who'd done all the research over the benefit of double pumping. She was like my saviour [laughs] because she was on the end of the phone to me, I knew in theory re-lactation was possible but I needed her help when milk didn't flow. I mean I was talking, oh ten days earlier I'd been making a hundred and eighty ml's in three minutes, I came here and I expressed for forty minutes and I didn't even make five ml's on each side. I know the stress doesn't help, and I know oxytocin, which is this wonderful relaxing hormone helps the milk flow and cortisol, the stress hormone stops but it was more than that, my milk had actually, my breasts had shut down their milk supply. And it was one of the toughest few weeks of my life, not to the same level as having a baby in intensive care but in it's own way as stress making because it was an avoidable situation. But we did it.

So you relactated by constant expressing?

Yes.

How often?

Okay. I managed to relactate by being a stubborn cow [laughs]. I had to express, I think it was nine times a day, for long periods of time, a lot of breast massage before a little bit of hand expressing to get the milk going, and fully draining the breasts, not clock watching, none of this let's express for five minutes, I knew I had to express until the breasts were completely drained and there was nothing there, so at the beginning it was a joke because I could have stopped after two minutes but I waited until the few drops had stopped and then I'd massage again, or I'd carry on with the bra. And it took weeks, it was, took so much longer, little by little the yield went up, you know, it was very stressful because I nearly did run out of my milk, and [sighs] you could say [sighs] well would it have been such a terrible thing if he'd had a bit of formula? Well the truth is with my son it would have been, because he was acutely dairy intolerant and we didn't even realise that at the time, he was suffering.

Before we go onto that can you just tell me were you putting him to your breast at the same time as expressing?

What was I doing? What I would do, because he did have a suck, he was a little con artist he had a suck but not enough of a suck. So he had enough of a suck to take some milk, but not enough of a suck to drain my breasts. So I would put him to the breast and then express, or express and then put him to the breast but basically my life was feeding and I had a two and bit year old around me as well, so that was tough for him, he kind of had a complex relationship with my pump. It did get dropped on the floor on more than one occasion [laughs] and I'm sure there was little bit of anger there. But I'd done it for him, I'd done it for my first son, I couldn't not do it for my second that's what I felt, you know, I felt that having managed to express my milk for number one to then not have managed for number two I would always feel like I'd let him down. I didn't want him to suffer for having been a second child, and also it's so lucky that I did because he managed to avoid ever having any cow's milk, any formula, and it's just was well because he turns out to be extremely diary intolerant. He was suffering even though he was only having my milk and only ever had my milk from extreme constipation. Like he was regularly going eleven days and only going because he'd had a suppository, so it was very out of the normal range, because breastfed babies I know can poo very often or go for long periods but this was out of the normal range and it turns out that it was because he was dairy intolerant, and I had to cut all dairy out of my diet. So even the dairy in my diet was making him sick so I dread to think what would have happened if I'd have given him formula.

How did you find out he was dairy intolerant?

We went to the children's hospital to find out.

How did they know?

One of the doctors we saw when I explained to him the symptoms there was almost excitement and glee because the way I explained the pain that second son had with pooing he said it was such a classic explanation, it was wonderful, it was like I was explaining how and when the pain came, the fact was, the pain came before the poo and then the poo and it was to do with the sphincters in his bottom, but I mean I'm married to a doctor so, you know, I'm not anti-doctor in any way but I loved the excitement about the explanation of pain, but it was basically his symptoms were classic of a particular kind of dairy intolerance and the proof was in the pudding, I cut out dairy from my diet and his problems subsided. So [sighs] I know it sounds crazy to say this but I feel very lucky that I had them in the order that I did, because if I'd had my second baby as my first his sub-mucus cleft is very difficult to diagnose and many, many kids who end up having sub-mucus cleft operations have them when they're four years old or five years old because they don't get picked up until the speech is problematic, because what happens is they don't thrive at the breast, they end up being given a bottle and no-one realises it's because there's a problem in the mouth. But by having had my first with his massive cleft palate where there was no doubt what was going on, I ended up being able to express for him, give him my milk and then have that expertise which allowed me to cope with my second and his problems.

How did you give the milk to your second son?

So my second son didn't have to have a squeezy bottle because he had enough of a suck to take from a regular bottle, it's called Doctor Brown's, it's one with a tube in the middle and there's something about the flow, they recommended it at the hospital. So we didn't have to go down the squeezy bottle route, which is why I guess lots of babies end up never being diagnosed with this kind of cleft until the speech problems arise.

So did he have to have an operation?

Yes, so our second son's operation came a little earlier, they actually did his op at five and a half months. He'd been really poorly, but he did well on my milk, my babies do seem to grow well on my milk and by the op he was doing really well, and post-op I still had this dream of being able to breastfeed. Now it was more of a plausible dream, less of a fantasy, because with first son he'd never spent any time at the breast but with second son all the way through his first five and a half months I was putting him to the breast and he was getting comfort, and there was a bonding from that, which was very special for him and me. But I didn't know whether he would want the breast post-op and what was interesting is post-op, he just wanted the breast because I guess it was less painful in his mouth than a bottle. But it was the strangest thing because, I guess if you imagine a normal suck would be like the muscles working to create this nice, smooth action, he was like this, it was like these muscles had come together in his mouth and they've never been together before, they weren't wired up to his brain, they didn't know what to do. Actually although he wanted to be at my breast it was incredibly painful for me because he had stitches on the roof of his mouth and those stitches were digging in, so post-op he went straight on the breast and it was agony and at first I thought 'wow this is what it feels like to have a baby with a suck' [laughs] but of course I've never had a baby with a suck before I don't know what it means, you know, the pain that mums can get in the first few days but then we clicked that it was actually a stitch [laughs]. So my husband was very clever and he went to an all night chemist and got a nipple shield and it was very much a quick fix, short term thing, but for two days, three days until that stitch dissolved, because I think you can get into all sorts of problems if you use nipple shields long term but it really helped get over that tricky, painful, that particular stitch that was going in just the wrong place. But it was wonderful that he wanted to be there, but it was really tricky for him because he was being overwhelmed both at the bottle and at the breast because suddenly he had more of a suck than had ever had before and he was for the first time having the sort of problems his brother had had as a baby, of not being able to cope with the milk and manage it. And actually those first few weeks post-op were really, really tough, it took him a lot of time to be able to co-ordinate the sucking and the swallowing and to make the sucking feel anything like a normal rhythm.

Did you do anything to try and slow the flow or anything like that for him?

No. Actually now you say that, I know that I could have, if I'd have maybe lied down and he was on top that could have helped couldn't it? No, I didn't, I know more now [laughs] I didn't know that then. But I was still expressing, it was the pump and Mummy. I began to reduce the pump and have more time on me and week by week we managed to do it little by little, and by seven months old I kind of suddenly realised that I hadn't expressed for a whole day and I was a breastfeeding Mummy, and that was the last time I've used a pump and I've been breastfeeding ever since.

So basically I [sighs], the first day, the first few hours I started expressing so I don't know where that came from, I think maybe I just knew because I'd read stuff, or it might be that there was someone key there at the hospital who got me going. I do remember being left to my own devices to a fair amount and it was one of those big old-fashioned pumps with the big glass chamber and I didn't know that it was a good idea to do a bit of hand expressing first or a bit of massage to help the milk flowing. I knew I had to make volumes, I had no idea how little colostrum there was in the first few days and so I, overdid it, I basically tried too hard before my milk had come in. And I think it was the first night or the second night I was in, I'd made myself sore in a way that you never should with a pump because you should never pump at a level where it's painful it should just be until the milk flows. I know this now but I didn't know it then and that's when my big sister came into play, she was in my room gone midnight helping me because I basically I'd got sore nipples, I thought I'd blown it, that was my attitude I think it was probably maybe day two or day three, that feeling, you've blown it, you've wrecked it, it's gone, you've got the, you know, you've got sore nipples, they're scabby, they're painful and you're not going to be able to ever express or breastfeed again. So but she got me back on track and for a few sessions I used the hand pump which just gave me a bit more control but then I learnt actually, I don't know how early on, but fairly early on that double pumping was the best way.

What do you mean by double pumping?

By double pumping rather than feeding, breastfeeding, sorry I should take a step back. When you've got a baby who cannot breastfeed, you can give them your milk by expressing it for them and it's called exclusive expressing, and it means that you are taking milk from your breasts using a pump as often as the baby would feed. And if you do it as often as a newborn would feed then your milk will come in the same way and you will be able to have enough milk for that baby for as long as you want to express for.

So how often is that?

So, about eight or nine times in twenty-four hours I was expressing and it was really important that I did one in the middle of the night, because that's when the prolactin levels, the hormone levels are highest, so sometimes a bit of a killer when the baby was sleeping to wake up and express but I really knew how important it was. and I discovered that double pumping was better than single, so rather than expressing off one side and then expressing off the other, it's better for yield and fat content if you can express from both sides at the same time. I guess a Mum who's feeding for twins, she makes enough milk for twins and it's probably sending all the right signals to the body. And if your baby isn't feeding from the breast they're not stimulating the nipple in the same way and they're not going you, you need to help your breasts in every way they can so double pumping is something really important. I mean, I was very lucky because had my first at a hospital which has a milk bank in, so that there's a lot of experience there and I was able relatively early on to tap into that. a tough decision was, before my milk came in, I was making from the very first day, but we're talking five ml's, ten ml's, twenty ml's I've got all the charts, I've kept them all.

Can you remember what that looked like, that colostrum?

Oh yes, I used to call it, 'Gold dust', I used to call my colostrum gold dust because it was, and it was like gold dust in every way, it looked gold, it was so rich and it was so precious. Because I worked so hard to make it and you could, I could see it, I guess with a newborn baby normally all that wonderful rich gold dust, it's like a magic in terms of the immuno properties it gives to the baby, it normally goes straight from breast into baby and you don't normally see it but because my baby couldn't feed from my breast I was making it for him and then giving it to him through a tube, a special tube through his nose and into his tummy. But I could see this gold dust and I was so proud every time I would make it and feeding it down into the tube which then came down into his tummy. But it was a really difficult decision, because there wasn't enough milk for me to give to him before day three because the pediatricians were involved, this was not a well baby, there was a lot going on, he was struggling breathing, he got an infection, they were dictating how many ml's he would need. With a normal baby the mum makes enough, if you know, we are a, a dyad, the baby and the mum, but it was a different situation and I wanted to get hold of some donor milk because I knew that it was possible. And normally they don't give donor milk unless it's a very sick premature baby, but all I wanted was donor milk for two days or three days until my milk came in. And maybe because my husband's a paediatrician, but it certainly wasn't the standard, they got me some, a little, little vial of it. but then the wrong doctor came in with the wrong information [laughs] because I suddenly panicked about diseases, that, you know, maybe there was HIV, maybe there was this, and the truth is it's pasteurised, it's checked, it's safe, but the person I asked didn't know and they gave me that level of doubt they said, “Oh yes I don't know, I wouldn't be so sure”. And so this precious little vial and I always feel bad about this, for everyone, for the, for the mum that donated it, and for the premie baby that might not have got it, and for my son who didn't get it, sat by my bedside as I dilemma-ed and defrosted overnight and ended up having to be thrown away, which is a terrible, terrible shame but in the end I've ended up being a milk donor so and I understand so much more and I understand how safe it is and how special it is.

Could you please just talk to me about storing expressed breastmilk?

Yes. Because it's got, it's, when it's made it's fresh and it's full of all those immunological factors, it actually lasts a lot longer than people realise. What I would always do is once I'd expressed, if I was definitely going to use it for the next feed then I would actually leave it out because it's best not even to be refrigerated if it's going to be used within a few hours, but generally I ended up putting it in the fridge. And I always only kept it in the fridge for twenty-four to forty-eight hours, which makes no sense because the evidence is there and you can store it safely in the fridge for three to five days, and that's what UNICEF Baby Friendly say. If you do that though it shouldn't be in the door it needs to be in the depths of the fridge. And if you're not going to use it within, well I would always say forty-eight hours but I guess you can leave it for three to five days and it's best not to freeze it so it's better to leave it in the fridge and use it than freeze it, because you do lose factors by freezing it, there are some of the elements in it which don't survive freezing, it's still better than anything else so, but anyway I would then freeze it generally [sighs] within twelve hours, I would try to, if I knew I wasn't going to use it in the fridge I would freeze it. And then the key thing is never to warm it twice. So let's say it was in the fridge, I would then warm it and use it, and once it had been warmed having been refrigerated I would only keep it for an hour and then it would be gone because it had been warmed up.

How do you warm it?

I would warm it in hot water. So if it had been never in a fridge it could stay out for I think up to eight hours but I generally use it within four hours because it, you know, it would be in-between feeds or whatever. But if it had been refrigerated or frozen, it would need to just be warmed up once and then once it's warmed really for not much more than an hour, which was always tricky in the beginning when feeds were talking an hour and a half, the truth was it was often two hours.

Can you warm it in the microwave?

You're not supposed to warm it in a microwave.

Why?

There's the worry of hot spots. You never, however well you shake it, have you really shaken it enough? And it's incredible, I've done it once myself with a cup of I think what it was something a cup of tea I'd warmed up in there and it's, was fine and then suddenly I got the real burn.

* Footnote 2: See 'Resources' for information about storing breastmilk.