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 theres 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 were 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

Hes two and a half. It’s funny I never thought I would, I never really thought how long I was going to feed for, I always knew I would plan to feed till about thirteen, fourteen months ’cause that’s when my wonderful role models, my sister and my sister-law had fed till. And certainly until eighteen months, lots of my friends had fed fourteen, fifteen, sixteen months. I kind of always assumed I would be weaned by eighteen months, but hell weve waited this long [laughs] for it, and he gets so much comfort from it, and it’s a special time, that I made a decision that I wanted to wean him naturally. I mean, there have been moments when it’s caused issues and tensions with my whole family dynamic, and I’ve got to keep everyone happy, I want everyone to be happy in the family, I only feed him once a day now and he knows that, you know, if he asks me now I say, ‘Yes, yes in the morning. So he knows and it kind of gives him comfort that he knows that theres a time, but I have to say it has been so wonderful, there was, when he was about eighteen months old he got very poorly and he needed to have an IV drip put in and I went to the hospital and the doctor was quite a young doctor and I said, ‘Do you mind if I feed him while they’re putting in the line?. And you could see the look he said, ‘Well what you could do is maybe feed him after to comfort him’ and I said, ‘Well [pause] okay I understand your idea. I mean basically he was thinking that he might associate my breast with the pain but he was too smart for that, I think also maybe he didn’t want me in the room while he was putting a line in, but my feisty eighteen month old was feeding from me and hardly flinched while that needle went in, and I know that he would have been hysterical and they would have to pin him down if I hadn’t been feeding him at that time. So theres been definite moments, and also theres, theres been points where hes had really nasty tummy bugs and he hasn’t been able to tolerate anything apart from my milk. And also when weve been travelling it’s been great, we went to South Africa, my husband was lecturing out there, and we went on holiday and a magical moment for me was feeding on the top of Table Mountain. We were there it was actually Valentines Day, a year ago, and people were walking by, most people didn’t notice at all ’cause you can’t even see what’s happening, but there I was sort of me attaining my dream and it’s very much led by [2nd son], if he hadn’t wanted to do it I would have completely understood, like [1st son] didn’t want to, it didn’t work for him, but for [2nd son] it’s been really important.

So your baby was then diagnosed as cleft palate?

Was diagnosed, yes so on delivery in the suite he was diagnosed as having a cleft palate.

What happened then? What did that mean to you two?

I’ve got, 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 ah you could call it skin-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, I don’t know whether that was before or after we found that he, 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-skin and then he would breastfeed [Sighs]. I mean it was to say a bombshell is not, 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 husbands was, and just to see the devastation on his face he, 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 is 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 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 fren, 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, you didn’t, 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, wed 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, that 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-skin you can give your baby the more special it is for both of you.

Will you be okay when he doesn’t want to feed any more?

I have such mixed feelings. I will be, I would be delighted on one level, on a rational level, I would be thrilled any time in the last year if he decided he wanted to stop, there will always be that little loss, that, because it’s something very, very special for the both of us and once it’s gone it’s gone, and I know were not going to have any more kids. So I will be happy but I will also, therell always be a tinge of sadness, but that would have happened even if hed have weaned before. And I, it’s interesting I’ve been away for him, from him, I have left him at my parents on an occasion, and with my mother-law on occasion for three days, that’s three nights, and he was fine without me, he managed fine without any breastfeeding. But the moment I came back he needed a feed, it was almost like his way of connecting back with me, so it’s going to be interesting to see how it gently spreads out, I mean, I realise I didn’t feed him this morning. And will that happen then tomorrow? Will there be a time when I’ll suddenly look back and think, ‘My goodness weve not fed for a week.

What was the impact on your milk supply and you when you were away for three days?

Not an issue at all. I think, because, we, I don’t know how much milk there is now, I don’t know how much, he sometimes now is quite quick, you know, have a bit of feed it’s almost like he needs to connect with me, it’s his way of sort of connecting with me and hell say, ‘Nugger side, nugger side. And then he goes on the other side and then, and then hes happy hes off. If I try and reduce it and try and get him to come off sooner then hes not happy it’s almost like his little something, if hes, you know, hes only two and a half, hes in, hes got the whole of his life ahead of him, hes at nursery now, hes exploring the world, hes incredibly adventurous and confident, but if he needs that little bit of something still from me in the morning, then that’s fine.

Okay. 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 breastfed 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, 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-one with your baby, loads of skin-skin, feed on demand. And by that point I so wanted to believe them that I, that I kind of fell into the, 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, I know with a normal healthy baby if they’re breastfeeding well it will sort itself out. On the Monday I went to [children’s hospital] where the surgeon looked in his mouth and realised that he had a sub-mucus cleft, 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 at, 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 [sighs], 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, were 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, theres no way I would have known that you can exclusively express long time, 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 breast, breastfeeding or infant feeding advisor and researcher up in the north of England, [name], 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 relactation 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

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 hed 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 bab.

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, ‘Were 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 u

You told me that you are, your background is Jewish?

Yes.

Does that have any, any impact on breastfeeding? Are there any laws or beliefs, cultural beliefs, lay beliefs?

I think it’s, it’s a very pro-breastfeeding culture. I don’t know anything, I think I know for example for very religious women in very religious communities, they go to a special house for the first few days after they’ve had their baby, very much like our mums did in the U.K., everyone was in hospital for five to ten days post baby, these days you’re churned out after a few hours, but in that, in those special houses they get a lot of support and a lot of breastfeeding support. And interestingly I’m now training to be a National Childbirth Trust breastfeeding counsellor and theres a group of counsellors and trainee counsellors in my area and I think were all Jewish [laughs]. So I think maybe it is something part of the culture but not explicitly so. I mean certainly a lot of my Jewish friends have breastfeed, have breastfed but then I’ve enjoyed breastfeeding but then I’ve also got Jewish friends who haven’t. So I don’t know that theres a particular issue one way or the other but it certainly is within religious communities it’s very much, even though there are modesty issues within Orthodox Judaism, breastfeeding isn’t part of that at all as in, you know, it would, I know that I have breastfed in the synagogue, not during the service but somewhere discreetly but not completely hidden away. It wasn’t actually during a service it was in a festival there was a party going on for kids and I just went off into the corner and I felt comfortable doing that. So certainly in my synagogue it’s very much natural and theres not an issue around it.

And are there do and don’ts?

Not that I am aware of, not that I’m aware of. Well I am an Orthodox Jew but there are always different levels and different degrees and there are many, many, many more people who are much more religious than I, I don’t cover my hair, I don’t wear a sheitel [wig], there could well be things I don’t, don’t know about, but I don’t think so, I think it’s known to be natural and good for the baby, good for mum, so I thinks it’s supported.

I’ve been on a bit of a roller coaster ride for the last few years with my boys, and there were key things that could have made a difference along the way. And pretty much all of them revolved around listening. Very often, I mean I’ve been very lucky in many ways weve been under the care of great doctors, great nurses, but where things have gone wrong it’s when people have heard what they wanted to hear, rather than what I was actually saying. So for example, with my first son I, we were worried about the breathing from day one, they knew my husband or they were looking for the best they didn’t want to see it. I was actually, my baby was being monitored because I was worried about his oxygen levels. No one was actually looking at the trace and it was dipping into the eighties, you know, that was a case of people assumed everything was okay so they assumed everything was okay. But on the breastfeeding side my goodness it’s again, it’s anything is possible if you can support mums. Allow mums to do what they want to do, it’s not a matter of pressuring a mum to feed if they don’t want to feed, but if that’s something that she wants to do she needs all the help that she can get. I remember with warmth in my heart the nurses who brought me a glass of water when they saw me hooked up to the pump and realised I’d forgotten to bring a glass of water. I remember, I remember the nurses who helped me in the middle of the night trying to get my second onto the breast, but I also [laughs] remember being told that this is fine, theres no need to refer on, when actually unless it is one hundred percent your area of expertise, if you have any doubt in your mind then you must listen to the parents because my goodness, mums very often do their best, it was my breast, I could feel there wasn’t a suck, if Mum is telling you she can’t feel the baby attached, if Dad is telling you it looks a bit unusual at the back of the mouth, don’t say everythings fine, refer on. So I guess in terms of breastfeeding my feeling is never say never, anythings possible with the right help and the right support.

What I want to know is, he has this feed in the morning?

Yes.

Is there a special routine or a set time? When does it happen?

It’s becoming well, it’s used to be in bed, my husband doesn’t want it associated with bed, just in terms of sleep and stuff hes a bit of a, a sleep doctor so he knows his stuff in this area and I’m happy to, you know, I’m happy to respect him, so generally we, we come downstairs in the morning and I sit on the sofa, this is exactly where I sit and he has his feed but it’s not even in the morning now.

First thing in the morning before anybody else is up?

No generally [2nd son], we come down, [1st son] will be sat here, well have chat, the three of us or generally I, [2nd son] will feed and I’ll have a little chat with [1st son] about the night or what hes been up to or whatever and it’s not even every morning now. I want him to wean himself, but I don’t, I will never suggest a feed to him and I haven’t done for a long while, probably for six months. But if he asks and if it’s in the morning then he can have. There was a few, a couple of months ago he wanted to feed in the afternoon at about four o’clock, he was a bit poorly, and if hes poorly then I’m more relaxed but we had someone coming to the house who’d never been to the house before. It was a teacher for the deaf for my first son, the doorbell rang as my youngest was wanting a feed and, you know, hes now, he was then two and almost a half, and for unfortunately we live in a society, even though the norm is I think nationally, internationally for years where it’s not perceived to be normal to feed a two and a half year old in public. Although it is my home I did feel awkward for a moment and I did something I’m not, I’m not proud of [laughs], I turned to [2nd son] and I said, ‘Do you want a hot chocolate?’ Now this is the kid who has had chocolate maybe twice in his life, who was in heaven on both occasions and who I thought would jump at the chance, he just looked up at me and said, ‘No Mummy [sobbing noise] booby. So, I just thought, ‘My goodness if it means that much to you of course you can have some. So I gave him a feed and the teacher for the deaf came in and she didn’t even realise what was happening she just thought we were having a special cuddle, I said he was a bit poorly and then later on she clicked and it’s, you know, it’s nothing I’m ashamed of, it’s interesting that in our society there are issues about feeding a two and a half year old, it’s something that many, many people do I know in private as in fine in the comfort of their own home but they wouldn’t tell other people they’re doing it. And I think maybe things are beginning to change.

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 theres a discreet hole in the, 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 with all my milk while I was trying. But and I realised well 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 want, 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 a, 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, I actually 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.

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, hes 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 hed 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 hes so, hes doing so well.