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Pre-eclampsia and high blood pressure in pregnancy

Experiences of breastfeeding and expressing breast milk

Women we interviewed who had pre-eclampsia or HELLP syndrome gave birth at very different gestations. Some babies were born prematurely and so needed to be cared for in a neonatal unit for a few weeks, so feeding was not always straightforward. Many premature babies didn’t have the ability to feed by sucking from a breast or bottle; they tended to be tube-fed and so their mother’s breast milk could be given to them this way. 

Expressing breast milk and breastfeeding was seen as a good option for helping their babies get stronger and healthier, and also a way to bond. Paige explained: “because she was in neonatal, you want to do it rather than feel you have to do it; you want to feel close to your baby; you want to do anything to try and get them home”. 

A few women said they hadn’t intended to breastfeed before the birth but that seeing their baby in a neonatal unit like SCBU (Special Care Baby Unit) or NICU (Neonatal Intensive Care Unit) changed their minds. Kelly saw expressing breast milk for her baby as “the only thing I could do” as she couldn’t bathe or hold him much. Betty thought “it was good to know that he was benefitting from my breast milk” and she liked being involved in his care. However, when her baby was transferred to another hospital the nurses were a “lot more militant about” establishing a schedule with her for breastfeeding and visits.
 

Lyndsey faced some challenges with breastfeeding. She had some support from nurses on SCBU as well as some of the other mums whose babies were in the same unit.

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Age at interview: 39
Sex: Female
Age at diagnosis: 34
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Well as I mentioned before he was…he didn’t have the sucking reflex because, I think he was too early for it. So he was tube fed for a little while and although I'd not really had any strong feelings either way about breastfeeding I thought because he was… that he was early and little I should give it a go and… but my milk didn’t come in for three or four days after birth because… but they would… the hospital it quite good and they'd try and encourage you. Oh but I had a dreadful time and if I hadn’t have been… if he hadn’t have been in Special Care so I don’t know if I'd have endeavoured. Everyone was very nice about it but it took one of the older slightly more cantankerous usually grumpy nurses to actually… she actually… she said, "Do you mind?" So, she sort of grabbed hold of me and showed me how she thought he'd go and it worked so, you know it took that someone actually knew.

I think it… the hospital I went to is part of the whole push for it, so you know everyone on SCBU (Special Care Baby Unit) tried to help you know, the expressing, and some of the other mums there were helpful as well. Because everyone used to say… all the nurses and doctors or whatever used to say, "It's not supposed to hurt." One of the other ones said, "It does hurt to start off with," it really does, it's like knives; it's like, "Oh that’s reassuring at least," you know so. So, but yeah they were all quite encouraging, it was just the fact that I don’t think there was enough pumps. There was pumps down in Special Care; there was enough down there but when you're trying to express at three in the morning I prefer to have one on the ward so. 
 

Although Claire knew she was poorly, she became determined to breastfeed her daughter when she was born prematurely.

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Age at interview: 39
Sex: Female
Age at diagnosis: 39
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Yeah, the breastfeeding, I was shown how to hand express because I said that I'd wanted to breastfeed. It had never been a huge thing for me up to the minute I delivered, but because she was premature it became, in my head, vital. If she was going to get any nutrients and things you know, I get how important it is and the fact that she was premature, I wanted to give her everything I possibly could. So I was shown how to hand express but it really didn’t, didn’t help, it didn’t seem to work for me.

And it wasn’t until three or four days later where, when I was speaking to one of the midwives was like, "I need to be able to do this, I need to be able to with my daughter as much as I can," that they asked a healthcare assistant to come in and go through the electric pump with me and how to use that. Was able to get a little bit of milk in and was able to give that to Alexandra but what, I guess became a huge issue in my eyes is I wasn’t producing enough to what she was eating.

So, we were having to use formula on top of me expressing. She was tube fed, she wasn’t taking it by bottle either, so this is via a tube at the moment. And it became kind of like the… it was almost like a mental thing, it was like I must, I must, I must and whether it was more pressure on me or not I don’t know but the nurses arranged for me to see the lactation specialist at the hospital as well, that there could have been a medication to maybe help, bring the milk in. So, I managed to see her [coughs]. I was advised to try herbal remedy, and religiously every three hours on pump, you know overnight's the best time. So again was doing all this but, you know it was 10ml, 20ml and by this point my daughter's in 40 or 50ml of feed, and it was driving me bananas. The hospital were fab, and when I was discharged I was able to bring an electric pump home with me.
However, several women had difficulties producing breast milk, expressing and breastfeeding. Some women who gave birth early found that their bodies were not ready to produce milk. Despite trying, their milk did not start. Babies born early were often too young to have developed the ability to feed from a breast or bottle. Some of the medicines women were given to help their pre-eclampsia could also reduce their breast milk supplies. Paige found her supply dropped when her medicines were changed and so eventually she used formula milk. Another difficulty was being separated in the hospital or when women were discharged home with their baby still in hospital. Samantha X thought it was a combination of medicines, her baby being born early and herself being unwell which meant she couldn’t breastfeed. 

There are also some medicines which mean that women shouldn’t breastfeed whilst taking them. This includes some types of medicines for lowering blood pressure and some types of pain-relief. When Aileen’s blood pressure wasn’t being controlled by medication, her doctors suggested she try another type which would mean she couldn’t breastfeeding anymore: “I was getting conflicting advice at that stage, and the midwives would say, “Keep on doing it, keep on trying, keep on trying,” and then the consultants were saying, “Well, yes, I know breastfeeding is good but we have to look after you as well”. And in the end I thought […] if I'm not well then I can't look after my baby”.
 

Josie wondered if her having morphine for pain-relief meant she couldn’t breastfeed. She thought decisions like this were about balancing priorities.

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Age at interview: 45
Sex: Female
Age at diagnosis: 39
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Well he went to …he went to the NICU (Neonatal Intensive Care Unit) and I wasn’t very well at all after the birth; I think my blood pressure had stayed very high. And I had a… I don’t know what happened but my temperature went really high and I didn’t have any effective pain relief because… I think because of all this… because of the blood pressure issues they couldn’t give me whatever the pain relief is that you give somebody after a c-section, and so… oh they were offering me paracetamol and stuff like that. So, once the epidural wore off the pain was just extraordinary and eventually you know because I was in so much… actually in so much physical pain that I couldn’t move at all. I said, you know they agreed to give me morphine although they said, you know, "This may make you feel sick and well may make you sick and will make you very tired." But they agreed to give that to me and I think, you know I think again their reluctance was about the fact that I was supposed to be expressing milk you know, but I was… I wasn’t really in a position to express milk. And to hear, you know to his… here's the other thing; it's like, well where do your priorities lie when somebody's that unwell you know and has a baby that’s that unwell. And since all this has happened I understand they have a milk bank at this particular institution, but they didn’t then four years ago and you know I just wasn’t sure where their priorities were lying with that I think because all I wanted to do was to see the baby and I couldn’t move. I was… you know once I had the morphine I couldn’t stay awake anyway, but eventually you know I think this was maybe a day later, 24 hours later, they just took me through to the ward and I saw him again.
Having problems with breastfeeding could be upsetting and have a lasting emotional impact. Some described feeling failure or guilt about the problems they faced with breastfeeding. Emma said she felt “horribly disappointed” and Kate said “my body was quite useless really”.

Sometimes problems with expressing milk and breastfeeding resolved after a while. Dominie found it “very disheartening when you only get a 0.2 of a ml” but was eventually able to pump bigger quantities. But some women continued to face difficulties with expressing breast milk and breastfeeding. Claire tried hand-expressing and then had some success with an electric pump, but her milk supply alone was not enough to feed her baby. She talked to doctors and decided it would be best for her daughter to have formula as the feeding issue was “holding her back in SCBU”.

While some women said they had good support with learning how to express breast milk and breastfeed. Paige said her hospital were understanding and not pushy. Often women had started out hand-expressing and then either moved on to using a breast pump or directly breastfeeding their babies.
 

Dominie was a midwife and had good knowledge about breastfeeding. She described what worked well for her.

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Age at interview: 25
Sex: Female
Age at diagnosis: 24
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OK, so you can hand express which is basically where you use your hand to express your milk off. Or you can… a single pump which is using an electrical pump, or you can double pump – so you can pump off both breasts at the same time.

OK 

And the hospital where I gave birth they have a special pump that you can… it's got like a premmy setting. So, it's like a fifteen minute cycle and it goes through the different sucks that they will do. So, the flutter sucks, the long drawing sucks, the pauses, things like that. So, you… so I was that… initially when you're first starting, hand expressing is the best.

And then double pumping is amazing to then get your milk going. On this side I couldn’t get very much milk off, so… especially on the pump, so I used to have a do a lot of hand expressing. 

I think some people just think that hand expressing is just pointless but actually I think it's one of the best things to really stimulate your milk. To get volume it's better to double pump, do you get what I mean?

The other things that I did are looking at pictures of your baby.

Yeah

Things that smell of them, things like that. So, yeah… so I did that until… so he was about five days old and I… before I delivered I met with the consultant, to his consultant, and I explained to her that I didn’t want him to have any formula because again, from my experiences and things like that, I know the benefits of breastfeeding and the disadvantages of formula feeding. So, I know it's very expensive but I asked them if they needed to give him milk that he would have donor milk. She explained to me that until my milk had come in they weren’t going to give him any food. So, he would just have a glucose drip until that point. So, I… on about… so, it was quite disheartening because the first few months they give… you give them they just put it in their mouth for mouth care, so just almost like just to wet their mouth really.

And then it wasn’t till about day three or four that he then started to having little volumes of my milk. And on day five I managed to have a breastfeed with him which is like amazing because at that point he was about 33 weeks.
O
ther women felt they were left on their own to work it out. Sometimes they felt pressured by doctors and midwives to express breast milk or try to breastfeed. Often there didn’t seem to be recognition that the woman was very ill herself. Emma found SCBU a difficult environment to try and breastfeed as it was “chaotic, noisy” and she was still very unwell. Julie recalled one time when she was “shouted at for not breastfeeding properly and I am thinking ‘you’ve got no idea what I’ve just been through’”. Samantha X “felt like a failure” because of her breastfeeding struggles and pressure from medical professionals didn’t help. Josie felt there should be “a bit less worry and emphasis on the issue of breastfeeding” and women should be given more “support to hold and to nurture and cuddle the babies”.

Establishing a routine with hand-expressing, pumping or directly breastfeeding their babies could be tiring. Helen X remembered this adding to her exhaustion as she wasn’t sleeping very well. Paige found it hard sometimes to get up during the night to express breast milk without her baby physically there with her. Despite the challenges, most women we spoke to who had tried expressing or breastfeeding were glad. As Aileen explained, even relatively small quantities were an important achievement: “I thought, 'I have given the colostrum, I have given a little bit of breast milk.' Ideally I'd want to breastfeed more but I don’t think I'm producing enough milk anyway. So I said, “That’s fine””.
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