When extra care is needed for mother and/or baby
In addition to the usual issues related to breastfeeding in the time surrounding the birth of a baby, there were several other concerns that were very similar whether it was the mother or the baby or both who needed extra care. They included:
- the need to be listened to and the importance of a diagnosis;
- feelings of helplessness and vulnerability and related to that the need to rely upon other people for emotional support and practical assistance;
- the variability of health professionals in their knowledge of breastfeeding and awareness of its importance to the mother;
- the importance of breastmilk, both the mother's own and donated breastmilk, and the determination of the women to provide it;
- the danger of health professionals, family and friends becoming focused on either the mother or the baby to the exclusion of the other or becoming focused upon a condition rather than the person;
- the impact upon breastfeeding of the medical environment, medical equipment, tests and treatments including medications;
- the all-consuming nature, in terms of time, energy and emotional resources, of dealing with an extraordinary situation and the isolation that may occur as a result;
- and the desire to strive for normality in their lives.
Diagnosis of Pierre Robin Syndrome for her first son born with a cleft palate was a positive...
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 u
Separation of the mother and baby after birth was an issue for women who were ill and needed extra care and for women whose baby was ill. Several women appreciated being able to spend time with their newborn baby before he/she was put into an incubator, admitted to the Special Care ward or taken away for treatment (see 'Support from hospital staff'). They talked about the importance of skin-to-skin contact (sometimes called kangaroo care) soon after the birth and later on during their or their baby's hospital stay.
She and her husband practised kangaroo care with their premature baby. The milk that she...
Right. And what other things were you able to do for your daughter while she was in the incubator?
We would change nappie's, change clothes, you know, clean them, I never bathed her in the hospital I don't know whether they actually did that but I was never there at the same time as that, so that was quite daunting when we came home because I'd never bathed, you know, bathed a baby before, but the health visitor was on hand to help with that so, yeah.
And what about your husband was he able to do anything for your daughter at the stage?
Yeah he, because we had, I think we just had the one car at the time so I would go off to the hospital, to the Kinder Clinic and leave him without a car but then go home in the evening, meet with him after work and then we would drive back together for a couple of hours in the evening and obviously at weekends he could be there, yeah, so.
Was he able to take her out of the incubator and hold her?
Yeah we used to do what they called kangarooing and they have the lovely chairs that you sort of, could sort of relax back on and they used to just put this little bundle, you know, on your chest and then and it was so warm it was summer and it's sort of forty degrees but they would wrap them up in all these blankets but it was skin to skin contact, it was, it was absolutely delightful, yeah.
Can you tell me any more about that kangaroo care?
We did it I think, sort of kangaroo care every day and, but not for too long, they, you know, they didn't want them out of, the sort of almost like a sterile environment I suppose for too long, I suppose they didn't want to, enough for them to, to bond with you and to get used to your smell and then back in, but it was very relaxing.
Did your daughter go to the breast during that kangaroo care?
No, never attempted to breastfeed during kangaroo care, no it was completely, completely separate probably because you, you know, did the kangaroo care in-between your four hours and you were only allowed to feed, you know, at four hourly intervals so.
So the amount of milk that you were producing became quite important to you?
It did and what I found upsetting was that because I didn't produce an awful lot, I didn't have masses and masses of milk, I had enough particularly in the early days when she was only drinking small amounts, but you would find that you, they would put a ce
After a caesarean section she had skin-to-skin contact with her daughter for four hours before...
How did you know that? How did you know about those things?
I mean I knew about it through, you know, through reading and through life experience beforehand but I'd never appreciated it because, second time round, with my second baby, I had my planned caesarean section and within seconds, you know, she was sort of having skin-to-skin contact with me, and she needed to go to Special Care but didn't go to Special Care until she was about four hours old. For the four hours in-between her being born and going to Special Care she was constantly with me, sort of just keeping warm and feeding, her colour then went a bit grey and she misbehaved herself and had to go to Special Care, but feeding her is so much easier and I am sure it is because we had those four hours together before she was, we were separated and she went off then to Special Care for sort of, I think it was twenty, about, about thirty-six hours, a day and a half we were apart. And so I think having had my second baby in, almost the, the same birth method, caesarean section, both went to Special Care, the second baby for slightly longer, I kind of you, sort of, yeah wax lyrical really about how important it is for mothers and babies to have that time together, that skin-to-skin contact together. Probably because it seemed, in my little mind anyway, to make such a big difference to me and my baby second time round.
Other women, who did not have the opportunity to spend time with their baby after the birth, said that they were anxious about not putting their baby to their breast, the impact that it would have upon their ability to establish breastfeeding and the effect upon their relationship with their baby in the longer term (see 'Dealing with difficult times'). For some women, though, this fear was unfounded as they were able to establish breastfeeding later on. A few women worried about finding themselves in a completely different part of the hospital from their baby or even in a different hospital altogether. One woman said that she longed for “the days when one could have a specialist mother and baby unit where we could both have been looked after in the same ward” (see 'Support from hospital staff').
She was separated from her baby after birth and waited for four hours to breastfeed him. She was...
So after four hours after the birth they brought him and you put him to the breast?
You remember that?
Yeah and I felt so proud and I think also, very, very protective, very protective because I didn't want anyone, to, to take him from me, I was extremely thankful, he was there with me.
How long did you keep him with you then when you, with that first feed?
That, then I was extremely tired, and I remember the, because I had to be taken from one hospital to another because there weren't, there was no available bed in transitional care where he was born, so we had to be transferred to another hospital and I remember the guys in the ambulance tell me that everything was fine because I kept on crying. I don't think it was even happiness. It was, oh how do you say that? It was agrada si mento, I was very, very thankful.
Several women talked about how much easier it was once they had a diagnosis and knew what they were dealing with and what the future held. They also said that it was important that they were listened to, especially when they said that they thought that there was something not right with their baby or when they said that they wanted to breastfeed. Several said how helpless they felt. They were reliant upon other people to do things for them and practical aids to make things easier, such as a beanbag, a bra that enabled hands-free expression of milk from both breasts at once and special bottles. One woman with a broken arm was able to continue to breastfeed and even change positions single-handed.
It was easier once she knew that her baby definitely had Down's Syndrome but that does not define...
So those were the physical reasons for breastfeeding, did anybody ever mention any emotional or bonding type reasons for breastfeeding?
Prior to Lily's birth I'd only been, I had understood from what I'd read and what I've been told that there is that kind of bond between the mother and the child when you're breastfeeding which seems totally natural and I was looking forward to that, and I think that the hospital were particularly keen that we bonded because I think they felt that there was a risk that when we, when we knew that Lily had Down's we might reject Lily, so I felt that because one of the issues on the night she was born was they kept popping in and out and were obviously debating whether she needed to go into the intensive care unit, into an incubator because of her blood sugar and body temperature but obviously felt that it was better for her to be with me. Now at the time I was quite kind of, 'Well if it's better for her to be away from me I'm not worried, you know, I'd rather what, what's best for her' but I think I realise now that again that was the, part of the judgement call for them was, if she stays with mum that bonding is more likely to take place, and when they do find out, perhaps rejection is less likely, I mean that's purely supposition on my part but that's what I think.
But in retrospect are you grateful for that?
Yes I am, yes, yeah definitely. Because when I remember lying in the bed looking at Lily and she was in the little plastic cot, and she had these, like little beady eyes and the little legs were circling away and I just thought she was the most beautiful thing I'd ever seen. When they told us that she had, or she possibly had Down's and I was trying to reconcile that I remember thinking, 'Last night I thought she was utterly beautiful, so what's changed?' Do you know what I mean what, what has changed? It's just my preconceptions, it's my prejudices that actually, you know, that's what could change this issue she isn't any less beautiful today, it's just that I'm worried for the future, so that helped, didn't it Lil?
I think the interventions were sometimes, feeling overwhelmed with the interventions came afterwards, because there were lots of times when I had to go to hospital with Lily and that can be quite wearing, it also means it's quite difficult to get into a routine because you attempt some kind of routine and then, that, you know, going into hospital, having to see, we've had to see quite a lot of clinicians, we've had to see paediatrician's, physiotherapist's, speech and lan
She needed practical assistance around the home and said that a crescent shaped beanbag was the...
How did that affect your breastfeeding?
Well I had to, I had a big pad over it almost like a sanitary towel and then a beanbag. And the beanbag was great actually because it meant that the baby could get in the right position quite easily without too much effort from me.
What about lifting the baby and doing things with the baby?
No I was very weak, so it was another way of being close really and I think that's why, that's another reason that I persevered.
So what sort of assistance were you getting at the stage?
It was mainly my husband at that stage he was on sabbatical so he was around more. Yeah.
And he did everything else for baby and you just fed?
I fed and nursed and was just there all the time but as far as dress, dressing, bathing and nappie's then I couldn't do it.
Was this solely because of the Caesarean and the weakness?
Certainly I could do more before the birth; I was more capable before the birth.
How long did it take you to recover?
Probably about six months, I think the weight had come back within six months and I would be back to sort of ten stone something like that.
And by then were you doing things normally for the baby yourself or was your husband still doing it all?
No we then got help because my arms have actually never returned properly but that's probably something that's, I'll never know really whether it's my condition or whether what happened at the birth was a catalyst I don't know.
Do you want to tell me about your condition?
Yeah, I've got a condition that we thought it was MS [multiple sclerosis] for many years and then it transpires isn't MS because I don't have the lesions on my brain, on my spine, so there appears to be a thinning at the base of my spine and whatever that is, obviously is now moving up my spine, as my arms are now weaker.
So what does this mean for you in everyday life?
So it means that I am, I think I'm the hub and I pass jobs outwards, so people have roles and I get support in the house from people who I employ to do cooking, and washing, and cleaning. So I still feel very much like it's my house, and I'm the mother, and I don't know what it would be like if it wasn't, you know, I've never experienced, obviously before the baby was born then I was doing more myself, you know, I was essentially running the house as well as working but now it's a bit different.
Are you still working?
Yeah, I still work, yeah.
What is it you do?
I'm a teacher in a secondary school.
And you're in a wheelchair?
Mostly, the women praised their family and were grateful to their health professionals for the support that they gave them. However, several mentioned the lack of knowledge about breastfeeding of staff on non-maternity (and sometimes even on maternity) wards and an insensitivity or lack of awareness amongst some health professionals of the importance of breastfeeding and mothering. One woman who was confined to bed couldn't get to her crying baby in her crib and couldn't summon help either. Another, who was very ill, said that everyone else was looking after her baby but her and that she wanted to take control of the mothering of her daughter but didn't have the energy to do anything about it (see 'Support from hospital staff').
She knew that the only thing she could do for her daughter was to provide breast milk. She...
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
She knew that it was not her but her baby who was having trouble with breastfeeding. She found...
Most of the midwives were fantastic but she was furious when a midwife in Special Care gave her...
So where were you while she was in special care?
I was still at the hospital on the ward.
On the postnatal ward?
Yeah on the postnatal ward just round the corner from where she was so, I could go down.
And did you visit her?
Yes I went down to see her and so on and.
And you expressed breastmilk?
Yes I did.
They'd got a pump at the ward which you could, in a separate room that you could go and use so they showed me how to use that and then every opportunity possible I was trying just to get something, something out for her so she could have some as, which went well apart from one, on one occasion the midwife came back down to the ward and she said to me, 'Oh we, we', she brought my daughter back in fact and she said to me, 'Oh she was hungry last night and we didn't want to wake you up so we gave her formula milk'.
How did that make you feel?
I was furious, to say the least, because I'd said to them, 'If I'm asleep wake me up and I will try and feed her myself and if not I will express', and so I was very angry because I had said to them, I'd actually put it in my birth plan that I wanted her to have no formula milk at all so, quite angry at that but this was this one midwife who wasn't particularly supportive of breastfeeding, the others all were, they were fantastic. I mean one midwife sat with me for two or three hours trying to get her to feed, so she was good, but this particular one I don't think she was that supportive of it and I just, I think it was the easy option for her.
Did you do anything about that?
I went and complained afterwards about it but then left it at that.
Did you get a response?
Trying to think, I did get a letter back I think, but I can't remember precisely what they said now, I think I got a pretty standard apology and not much else but I think there was much less emphasis then on breastfeeding, we're talking nineteen ninety-nine, I think there was less emphasis then on breastfeeding than now, so you didn't have any of the hospitals where they were Breastfeeding Friendly and so on.
Most women with sick babies said that they too felt helpless and that there was very little that they could do for their baby other than to be with them and to express and provide their breastmilk. Breastmilk (whether their own or donor milk), therefore, became a precious commodity and an important focus for the women. They were concerned to maintain or build up their supply and even to build up stores of expressed breastmilk in the freezer. Several worried about wasting and discarding it because it had taken so much effort to produce and one woman said that her health professionals were apologetic about wasting some of her milk. Many of the women who expressed breastmilk later became milk donors (see 'Variations of the breastfeeding experience').
At first, she was so focused on her very sick baby that she omitted to take care of her milk...
At this stage before you went on how often had she been feeding a day?
It was still about every three or four hours.
So still quite frequently?
Yeah, yeah, yeah, she was quite.
You must have been very full by then.
I hadn't again thought about it until we got her into, on to the ICU about four o'clock and then they gave us a bed, and I remember thinking I was a bit sore but when I woke up the next morning I was very sore.
And nobody said anything to you at this stage about your milk supply?
To be honest we were all so shocked with her and just moving her around and they could have done, I don't really know, actually they probably did but it was the least of my worries at the time, it was just, 'Oh well whatever'll happen will happen, we'll kind of deal with it later'.
So you woke up the next morning very full and very sore?
Yep, and then I sort of knew that I was going to have to express and again haven't done it but fully aware of people having done it in different situations even sort of down to friends wanting to go out to supper and express milk, so I.
So you'd never done it at all?
No, never expressed before ever.
Was there anybody there to help you?
Yeah, fantastic, fantastic nurses, fantastic neonatal advisor and they were really helpful, one of the nurses took me up and a specialist helper, lots of different specialists there came and helped me basically and showed me how to do it and so I just got on with it really and then.
So were you hand expressing or using a pump?
No we had a pump and they showed me exactly.
How to use it.
Electric pump. My sister, actually it's not completely true, my sister, I'd asked my sister if she could get me a, I must have asked her the day before thinking about it because she did, she brought me one in the following morning, I must have asked my sister if she could get me a pump from the chemist, and, hand pump, but I was kind of dashing back to the hospital, didn't really get a chance to think about it. But the advisors, the breastfeeding advisor in the hospital came and helped me and, showed me how to use the pumps, they had a little room, a couple of pumps and I managed to pump kind of three or four bottles and then took them down and gave them to the nurses so it started straight away.
Did they use that milk?
How did they give it to her?
I'm trying to remember, in the first instance I think they were still, they were still feeding her, and they were feeding her through
Her daughter received milk from the milk bank so she expressed and donated to the milk bank...
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, so that, and that felt really good, really, really good. Because I used milk bank milk when she was born, and I wanted to re-stock and I could, so we did.
How does that work, the milk bank thing?
You express it obviously being extra careful with hygiene because it's going to very sick premie babies and you freeze it, you get it to the milk bank, they mix different batches together, they pasteurize it and then they re-freeze it.
Do you have to take it to the milk bank or do they come and pick it up?
The last time I took it because we were going up for a check-up for my daughter anyway, but one of the cardiac nurses who has looked after my daughter comes down regularly to our local hospital and has said that in the future she'll transport milk back if I want her to, so.
And this is purely voluntary?
No payment, no nothing, warm fuzzy feeling in one's heart, knowing that as they say, 'If all premie babies were given human milk then we'd save a hundred lives a year in Britain alone', and just knowing that by doing that I could be saving someone's life, just like donating blood I guess, and it's free and I get very little now actually when I'm expressing and I'm not donating at the moment because I haven't got enough for my daughter if I do, but, when it was gushing might as well. What harm is there in it now? None whatsoever, and I say I used it, so the least I can do is give some back.
Several women mentioned the danger of focusing on the medical condition of either them or their baby and forgetting about their other needs or the needs of other people. Sometimes interventions (like the medical equipment, investigations, medications, desire to know how much the baby had drunk, what was the baby's body temperature, blood sugar levels or weight) were not very compatible with breastfeeding. Several women commented on the use of nasogastric tubes saying that they found them distressing and wondered if they were used too readily and became relied upon when breastfeeding could be tried. One woman, who had a home birth, said that she was glad to have avoided all of the medical interventions that her daughter who had Down's Syndrome would have been subjected to. Some women began to wonder just whose baby she/he really was. “Initially, when I looked at her in the incubator, she didn't feel like she was mine,” said one woman. Another woman was so ill that her life was in danger and her health professionals were so focussed on her medical condition that they forgot that she had just given birth, had milk coming in that needed to be dealt with and had a strong desire to be with her baby.
Even though she was extremely ill she wanted her baby with her. Breastfeeding was the only thing...
I was suffering from heart failure due to post partum cardiomyopathy. This condition was explained to me and my husband as something separate from the eclampsia, I was very unfortunate they said to have suffered from two quite rare pregnancy-related illnesses. At the time they were unsure of what, what would happen about it. The first thing they did is they told us that we wouldn't be able, we wouldn't be able to have any more children, they advised that we couldn't look at this because it would, the literature that they had on the condition said that it would return and the chances are it would be worse, and this happened immediately after a fall, immediately after giving birth so, it's difficult that I'd just had a baby so everybody thinks that you shouldn't be affected by being told that you won't have another, in reality I'd just had a baby, my hormones were everywhere, my maternal instincts, were, were overwhelming, and I were told that I couldn't have another, child, or it would be potentially fatal to have another child. So it had, it actually had a really, really big impact, it hit me, so hard, but other people didn't necessarily understand it because they thought, 'Why would she be upset she's just had baby? Why she already be upset about not having another?' And with the talk of, there were lots of, lots of things thrown about in the room, they talked about possibilities of a transplant, they talked about the medication that could be used, very quickly they talked, they sort of went down the route of the medication, and decided what I should take, but then they also decided that I should take warfarin which they told me I couldn't breastfeed if I took it, to which I said quite naively, 'Well you're going to have to look at something else because I am going to, I want to breastfeed so I'm not just going to accept that'. I don't think it were, I were too popular at that time with some of the, the doctors but, I felt that everybody were taking control of every aspect of my life, absolutely everything, they monitored when I went to loo, they monitored everything, they monitored my heart rate, everything about me somebody else was checking and looking at, and yeah because I needed that to get better, I'm eternally grateful, but they weren't taking away my mothering, I was quite, it was the, in fact it was only thing that I could keep hold of and I were quite stubborn and I thought, 'No because if I breastfeed you can't take her away again' and I knew that because somebody had already said to me that because I'd been re-admitted into a different area of the hospital there were a possibility that me daughter had been discharged, that she might go home with me husband and they weren't, there were no way that that were happening, absolutely no way, so I said, 'No, no, I'm breastfeeding and I want you to look at it', and they did, and they came back and they said that they would try something else, they said they would try something else if it didn't then I would have to have the warfarin but they were prepared to try something else and they did and it worked. So I, kept hold of my daughter, and the only thing that I did sort of agree to is that at night time she went into the staff room which they absolutely loved, nurses, but she were brought back to be fed, so it meant that in-between feeds I could rest and weren't disturbed by my daughter's little, you know, every turn and such. And we spent a week on coronary care, by the time we left the hospital I was breastfeeding wonderfully, absolutely great we were quite sort of in tune w
One woman said that she wanted people to focus on her daughter as a person who happened to have Down's Syndrome rather than a Down's Syndrome baby (see Interview 19 above). Another talked about being isolated because of the time that it took to care for her baby and how she had to make a special effort to keep up with friends (see Interview 13 above). Several women talked about looking forward to the time that they and their baby could go home, get on with breastfeeding and get back to a normal life (see Interview 41 below).
Fuller, edited narratives of the following interviews are provided as written clips because they give more detail of the women's experiences than it is possible to cover in this topic or the video clips.
She expressed breast milk long-term for her two babies with cleft palates. Her second son was...
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
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When she was first born it was evident that she was quite small, she was five pounds seven ounces. She was more or less full term, she was thirty-eight weeks and I hadn't gone into labour but what had happened was, I had a midwife check. My midwife came round, who happens to be my sister-in-law and as we listened to Lily's heartbeat, I had just literally laid down on the sofa, it sounded really slow and what the midwife said to me was, 'Don't panic, because often if you lie down you contract your tummy muscles, you give the baby a bit of a squeeze, it can lower their heart rate so don't worry, but we need to follow this up'. So I went into hospital and they put me on the monitor and they weren't totally happy with Lily's heart rate, it was actually too static. They wanted more of a variation. So I went in the following day and they put me on the monitor again and it became evident that Lily's heart rate was dropping for no apparent reason and on some occasions it would drop very low for quite a long period of time. So they felt that they couldn't risk her being inside of me any longer and that they had to get her out, so although they tried to induce me it had absolutely no effect whatsoever so I had an emergency caesarean, so I didn't do labour at all.
So when she was born she was small and that was a surprise because I was quite large and up until then there had been no indication that she was smaller than they would expect for a baby of her term. So it was a surprise and I also knew from the previous scans they had done, in the kind of previous twenty-four hours that I didn't have a lot of amniotic fluid which was another concern for them, which was another reason for the caesarean. When Lily was passed to me, I remember looking at her and obviously kind of being quite overwhelmed with that kind of moment, but I thought at the time 'oh are her eyes okay?' Her eyes had looked a little different to me, but I didn't know what a brand new baby looked like and it was a baby who hadn't done labour so I thought that basically she'd come from nothing into this great big wide world and we went literally straight from that, we did some breastfeeding. They took her body temperature, they took her blood sugar, they said to me 'It's very low, we need to get some food inside her, you can persevere with breastf
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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 ver
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She was very well until about seven and a half, eight months, and we hadn't had any problems and then she had a slight cough and a cold, so we took her in to see the doctor and the doctor said “Yeah” but didn't really, she was kind of yelling and having a bit of a shout, and the doctor kind of said “Oh well she's probably got a bit of a cold we'll give her some antibiotics, if it hasn't gone come back kind of in ten days” and that was on the Thursday. We'd come down to see her grandparents and on the Monday morning sensed that she wasn't quite right again and her cold wasn't getting any better, gradually over the course of Monday morning I said to my husband “I think we ought to take her in to see the GP”. I couldn't actually get in to see the GP, he said “Oh well if you're worried about her take her up to A&E at the hospital” and gradually as the morning went on she got less and less happy and normally, if she wasn't happy I could normally feed her and that rectified anything, it sounds terrible but if she was unhappy I'd kind of put her to the breast and she was fine. And this particular morning she just didn't want anything, she was getting unhappier and unhappier, my husband came home and said “No she really isn't right” so we took her up to accident & emergency. They had a paediatric accident & emergency which was great, took her straight in and they knew straightaway there was something wrong, they whisked her into a side room, took me with her and said “No, no we've got problems here we need to try and resuscitate her she's very” I'm trying to think of a word, dehydrated, and they spent about two hours trying to basically get lines into her and to rehydrate her.
Had she been feeding or had she slowed down because of the cold?
She'd been feeding fine until the previous day and really until, even the night before she was fine and then suddenly that morning.
So it happened very quickly?
It was a very, very, very fast thing and suddenly she just presented herself as really not very well, she started to go a bit floppy and rolling her eyes around a little bit, we just knew there was something wrong.
Did you have any idea how serious it was at that stage?
No comprehension, I just thought she had probably a very bad cold, possibly an infection of some sort, we got her into A&E and we realised quite quickly, they thought I think initially it's probably pneumonia, but still we didn't really have any comprehension and then, as I say they took a couple of hours of trying to resuscitate, they couldn't get lines into her because they couldn't find any veins, which I now understand is because she basically was so ill, and they had to put lines in the end into her bone in her leg which was fairly harrowing. They were going to take her up to intensive care for a while, and we were sitting, and then one of her paediatric consultants came and said “We've just taken an x-ray and we think it might be the heart” we were kind of like “Ah” so from, she was fine to, she may have had oxygen deprivation and we may have, you know, there may be slight learning difficulties to, “Oh we think she's probably got a heart condition and she may need a transplant and she may not make it, and we were both really in a complete state of shock.
You must have been on an emotional rollercoaster at this stage?
It was, yeah it was shock, it was pretty horrible actually that first day, but they got her up to intensive care and we just kind of,
*Footnote: The book that this woman refers to is “Breastfeeding Special Care Babies (Second Edition)” written by Sandra Lang.
Last updated September 2015.