Jessy

Age at interview: 39

Brief Outline: Jessy was unable to breastfeed her two children because unknown to her at the time, she suffered from Raynaud’s, which causes vasospasms that blocks the flow of blood commonly to hands and feet. Vasospasms can also occur in the nipples of lactating mothers. Jessy was not provided with this information by health professionals during pregnancy or when trying to breastfeed. There is treatment available.

Background: On maternity leave, works full-time. Two children: ages 10 weeks and 8 years. She is divorced and lives with her partner.

More about me...

Jessy was unable to breastfeed her two children because, unknown to her at the time, she suffered from Raynaud’s. This condition causes vasospasms that block the flow of blood, commonly to hands and feet. Vasospasms can also occur in the nipples of lactating mothers. There is treatment to help breastfeeding mothers, but neither her GP nor other health professionals made the correct diagnosis. In Jessy’s experience, breastfeeding became extremely painful and her cracked nipples bled every time she tried to feed the baby. She managed to breastfeed her first baby for ten days and her second baby for two weeks.
 
With her first child, Jessy thought that her lack of command of the English language had something to do with it – she couldn’t understand all the content of the breastfeeding workshop she attended or, all the other information given to her. She developed mastitis and the pain was excruciating. She also felt under very heavy pressure from midwives and health visitors to breastfeed despite the poor condition of her nipples.
 
Jessy has always wanted to breastfeed so when she became pregnant with her second child, she felt ready; her command of English had considerably improved and she was able to read and understand the written information. She was able to follow the content of the breastfeeding workshop she attended and learnt all about positioning the baby to the breast to ensure good latching. But despite her planning, her second experience wasn’t much different from her first. Like the first time, she developed mastitis and experienced severe pain every time she breastfed her baby. She persevered for almost two weeks, but the pain was emotionally and physically dragging her down.
 
For Jessy, breastmilk is best and she tried to express hers but every time she did so, she ended up collecting a mixture of milk and blood which could not be fed to her baby. She was tearful and desperate and her first experience put her off asking health professionals for help the second time round.
 
Her partner could no longer bear to see her going through all the misery, so bought baby formula and persuaded her that she had tried her best and it was time to start using baby formula. Jessy also drew support from her sister and her mother, who also wasn’t able to breastfeed her children. Both women helped Jessy understand that many women are unable to breastfeed and that it's fine; that the important thing for the baby is to have a positive, happy mother.
 
She strongly believes that health professionals should make expectant mothers aware that, in some cases, breastfeeding is not possible. Moreover, there appears to be little information about the possibility of vasospasms affecting the nipples of breastfeeding women. She feels let down by the health professionals: GP, midwife, and health visitor, because no one seemed to have known about Raynaud’s when she was having problems with breastfeeding. She thinks that GPs should be made more aware of this condition.
 
Jessy feels that there is a romanticised view of breastfeeding accompanied by an almost 'tyrannical' attitude on the part of health visitors and midwives. She illustrates her view with a recent experience she had at a baby café. She said that once the health visitor at the café found out that she was using baby formula instead of breastfeeding, she stopped being interested in her. Jessy feels that such an attitude is prejudice. She still has many unanswered questions about baby formula that she would like to talk to a health professional about.

Jessy felt under pressure from one midwife to carry on breastfeeding her baby but the health visitor was more understanding.

I thought that maybe because my English wasn’t good enough, I didn’t understand the instructions. So this time and I went - and that time it didn’t work at all. It was painful. It was horrible. And I asked for help, I’ve, I was - I felt I was bullied into you must breastfeed even when you are, I was in agony. I was just having the worst time of my life…
 
…and their target was that I was a mum that must, mum must breastfeed, no matter what. Her nipples were bleeding, it doesn’t matter. She was in pain? It doesn’t matter. She was almost getting post-natal depression from all the stress? It doesn’t matter. She must breastfeed. And that’s what, what I felt like it was really terrible. In, in fact I got, they got like, they were turning up at my house, they were calling me, like every so often to check that I was breastfeeding. Then, the last thing it was, the last straw was that they make me pay to a woman to come and give me a personal lesson in breastfeeding.
 
So I was just like and then and my husband at that time, he stepped up and then he, he basically kicked them out and said, and sat with me and said, “What are you doing? You should stop, this is not good for you”. And then it was lucky when the midwife hand me over to the health visitor, one of the health visitor was really still like pushing me, pushing me, “You must breastfeed, you must breastfeed, you must breastfeed”. But then the second health visitor came to me and say, “Listen, the most important thing is a mummy’s OK. If the mum is not OK, how are you going to look after your baby? So don’t worry, my children grew up in, on formula, OK? And, don’t tell anyone I said it, I said so”. And then it was all, OK so she makes me feel better. 

The GP diagnosed Jessy’s cracked and bleeding nipples as ‘thrush’. By chance Jessy found out she suffers from Raynaud’s and that it could affect the nipples of lactating mothers.

No it took a while to heal actually. Like, even after when I, with the mastitis, the mastitis last two weeks. The nipples I have to put these, the doctor look at them and say, “You might have thrush”. So he gave me a cream for thrush. But then in, it was still the blood in the like, you know - it was all, it was all broken, completely broken. I didn’t even, I could see it from above, I just promised myself not to look at it in the mirror because that would make me really freaked out [laughs].
 
The second time or both times?
 
Both times, but the first time I didn’t see, the first time I thought I was going to lose my nipple because the nipple was really coming apart of the breast and the second time it was just the skin was just completely broken and it was blood in my shirts like, I was literally dripping blood…
 
So I only recently discovered - I have problems with my tissue. My tissue doesn’t heal as quick as it should. My blood doesn’t flow, I have a circulatory problems and then it affects, as much as it affects my hands it affects my breast tissue which makes it really painful. 

A doctor at her place of work noticed Jessy’s hands and asked her about breastfeeding. It was the first time Jessy heard about Raynaud’s phenomenon of the nipple.

I was in this place and he comes along and he said, “Hi, how are you?” And I said, “Oh, yeah, look, I have my baby”. And he say, “Oh very good”. And then he looks at my hands and then he said, “Did you, were you able to breastfeed?” Like that. And I said, “Hm, hm, no, not really, I had problems, it was really painful”. He say, “Hmm, so during the winter your hands get really cold and painful?” And I said, “Yeah, yeah, my fingers, I can’t move them and they get really purple”. He was like, “Hmm. That’s called Raynaud’s”. And I say, “OK”. And yeah, it’s a circulatory problem - and it affects the tissue. And what happens is the blocked vessels don’t get enough blood and that causes pain. And that also happens, may happens, may be the reason why your breastfeeding was so painful to you. And it’s actually, he, the, it’s very, very painful. And I said, and he said, “Unfortunately, it’s, it’s something that’s not been researched enough and not many people know and it would be wonderful if GPs knew more about it because there is some medicine that they can prescribe that you can, you can take while you’re breastfeeding that will help your circulatory issues and then it will make the experience more - less painful or bearable”. Because my, and I could see the benefits completely because as much as there is people out there that choose not to breastfeed - my choice was to breastfeed but I was physically unable to do it. 
 
And then I think it will be really, really helpful if future generations or, or the next generations of mums that go, who are suffering from the same as I do, can benefit from these information, or if the GPs know more about it. And then when a woman goes to see them they can say what it is, or if the midwives, the midwife are aware of these and they can help the mum if the choice, if the mum chooses to breastfeed.  

Jessy explains why she couldn’t continue breastfeeding and how she felt when she decided to prematurely wean her baby.

This time it wasn’t, it wasn’t much different. This time I did the same but this time I was prepare. 
 
I had everything I could possibly have, I had nipple cream, I had the training, I watched the video, I read the books, I have a doula with me, a friend, a friend I could trust. I have, I even bought nipple shields and I used everything I could, I did everything I could possibly do. But then I was still obsessed with the, “I’ve got to do it, this, my boobies are not going to win, I’m going to win, I’m going to be able.’
 
But then it got to a point my chest was covered in, were covered in blood. I was in so much pain that my breasts felt like they were on fire, like my whole chest felt on fire. And the last thing I did was the - he start crying, I took the nipple shield, I tried to feed him with the nipple shield and even the, even with the nipple shield it was extremely painful.
 
And I was, he was crying, I was crying and then my partner came in and said, “What are you doing? Stop it. I just going to give him formula, it’s not the end of the world”. He had to convince again - to me it was really sad, I spent a couple of nights, I felt, I felt like a, I was grieving that I couldn’t breastfeed for five days. But, but when the midwife hand me over again to the health visitor, the health visitor talked to me, she realised that I did the best, I did as much as I could to breastfeed. And she told me, “Well, I must let you know, that there is a small percent of people who can’t physically breastfeed, like it’s, it’s not physically possible.”
 
And she asked me, “Do you suffer from, from cysts in your breasts? From lumps?” And I said, “Yes”. “OK, that’s one of, could be one of the reasons, because your tissue doesn’t heal quickly enough to carry on doing this, so if you might actually be doing more harm than good, on the one hand. And on the other hand if you’re, if you are not well enough to look after baby who’s going to look after him, he needs you. So it’s better for mum to be good, baby’s happy, you are happy. And then it will go, and, she said - and then made me feel a little bit better but I was still secretly crying like, I didn’t tell my boyfriend that I was crying. Like, “Oh, I can’t breastfeed”. It was really horrible. But I still feel -well is the best I could have done? 

Recently, Jessy learned that she has a condition called Raynaud’s that could affect the nipples of lactating mothers. She talks about how it affected her when trying to breastfeed her children.

I only recently discovered - I have problems with my tissue. My tissue doesn’t heal as quick as it should. My blood doesn’t flow, I have a circulatory problems and then it affects, as much as it affects my hands it affects my breast tissue which makes it really painful.
 
…I was using nipple shields, made of silicon - well, I used them a week after, after seven days just to give it a try because my, at the beginning, my aim was to be able to get him to latch and then I managed to get him to latch properly and then tried different, different position, the rugby ball, the front facing, sideways, every position possible until I found the one, the one that suitable for me that was the rugby ball. But then, I noticed that, that no matter what, how many massages I did, I gave to my breasts they were so sore. My nipples start, start cracking even when I, my, when I was continually keeping, keeping them with nipple cream, like Lanolin cream. I then, I noticed that they start bleeding and they would not stop bleeding the milk was, I tried to press the milk just to carry it, be, to carry on giving him milk [sighs] and the milk looked like strawberry milkshake, there was so much blood in that, I wasn’t able to give him that neither. Then I try to just use the breast that was less damaged for a while and tried to let the other one heal. It, it seemed I was never, ever healing. And then it was that, that feeling of the fire, they were on fire, it was horrible. He felt like, every time they were out, I put him near my breast he felt like he was like a little shark or like a piranha [laughs] like just biting your breast, it was just oh. It was agony, agony, completely agony.
 
…No it took a while to heal actually. Like, even after when I, with the mastitis, the mastitis last two weeks. The nipples - I have to put these, the doctor look at them and say, “You might have thrush”. So he gave me a cream for thrush. But then in, it was still the blood in the like, you know - it was all, it was all broken, completely broken. I didn’t even, I could see it from above, I just promised myself not to look at it in the mirror because that would make me really freaked out [laughs].
 
The, the second time or both times?
 
Both times, but the first time I didn’t, the first time I thought I was going to lose my nipple because the nipple was really coming apart from the breast and the second time it was just the skin was just completely broken and it was blood in my shirts like, I was literally dripping blood.

When Jessy experienced painful breastfeeding with her second child, she didn’t ask for help from her midwife or health visitor.

So because of my past experience I decided not to tell too much to the mid, to the health visitor or the midwife because I didn’t want to feel any of that pressure I had before, that I felt bullied into “You must breastfeed, it’s the best for your child”. Because when they tell that, I felt like well I felt like - first I wasn’t doing good enough. I wasn’t doing the best for my child. I was - I didn’t feel like a good mother. I felt like a good bad mother instead. And I felt useless because I wasn’t able to breastfeed. So this time I tried to avoid that so I didn’t tell much to the midwife. But when I went to weight him on the- I think it was in - the last time I saw the midwife I mentioned to her that, “Oh no I stopped breastfeeding”. And she sort of mentioned, “Are you sure, why don’t you pump it? Are you sure you don’t want to?” And I felt like oh here we go, here we go, here we go and I avoided the subject completely because I, I just felt like I can’t.

When pregnant with her second child, Jessy made careful preparations to ensure breastfeeding was successful, but sadly, she had the same experience as with her first baby. She felt devastated that she was unable to breastfeed.

This time I kind of like worked it out with a different strategy. So I gave the chance to myself, I really want, I really, really wanted to breastfeed it was in my birth plan and everything. And then I went into the workshop again. This time I understood everything. I understood the theory. I watched videos. I read books. I talked to people. I practiced with dollies. I did everything possible. So by the time he was born my birth was a bit complicated. So I ended up having what I think was too much epidural so my breasts were numb for a good 24 to 40 hours.
 
After the birth?
 
After the birth. So I was breastfeeding fine no problem. He was having no troubles at all. I, he was latching perfectly. Everything was fine. As soon as I came back from hospital the painkillers started wearing, wearing off. Then every time I have to breastfeed him even when he was latched properly, it was just like - I just talk to myself and I say, “Sharp pain”. So I started doing breathing and I was like ok it might go. I started talking to people and they kept telling me, “No it will be, it will go, it will, it will go away”. I showed people the - well like a friend, I had a friend who’s a doula and she was [hush] helping me with the breastfeeding.
 
So she was telling me, “He’s latching properly”. And I said, “Yes but the pain is getting unbearable”. And after ten days like my breasts were completely raw, bleeding and swollen. And every time he cried I was, I was really tense. My hands sweat. And I was trying, I was getting angry at people every time he wake, I felt that they weren’t, you know because he wanted to be fed. And I just - I was terrified…
 
I had everything I could possibly have, I had nipple cream, I had the training, I watched the video, I read the books, I have a doula with me, a friend, a friend I could trust. I have, I even bought nipple shields and I used everything I could, I did everything I could possibly do. But then I was still obsessed with the, “I’ve got to do it, this, my boobies are not going to win, I’m going to win, I’m going to be able…
 
I was using nipple shields, made of silicon - well, I used them a week after, after seven days just to give it a try because my, at the beginning, my aim was to be able to get him to latch and then I managed to get him to latch properly and then tried different, different position, the rugby ball, the front facing, sideways, every position possible until I found the one, the one that suitable for me that was the rugby ball. But then, I noticed that, that no matter what, how many massages I did, I gave to my breasts they were so sore. My nipples start, start cracking even when I, my, when I was continually keeping them with nipple cream, like Lanolin cream. I then, I noticed that they start bleeding and they would not stop bleeding the milk was,  I tried to press the milk just to carry it, be, to carry on giving him milk [sighs] and the milk looked like strawberry milkshake, there was so much blood in that, I wasn’t able to give him that neither. Then I try to just use the breast that was less damaged for a while and tried to let the other one heal It, it seemed I was never, ever healing. And then it was that, that feeling of the fire, they were on fire, it was horrible. He felt like, every time they were out, I put him near my breast he felt like he was like a little shark or like a piranha [laughs] like just biting your breast, it was just oh. It was agony, agony, completely agony.
 
And during this time you were trying to do everything on your own? Trying to, trying to cope with this on your own. You didn’t want the health visitor or the midwife involved?
 
Yeah, no, I try, I was just like I got my friend, the wonderful doula to come and look at me. As soon as she came, “Oh yeah you’re latching fine, that’s the right way, that’s the right position”. I just went, “OK”, and I didn’t tell her, I didn’t seek her help anymore. I didn’t tell the midwife when they came, I just say yeah, “You’re breastfeeding?” “Yeah, yeah, I’m fine”. And I was just like hoping that, that he wouldn’t cry for a feed while she was there in my house. Then I just was trying to cope on my own, I didn’t, my partner wasn’t, he noticed, because he knows me, he noticed my change every time I have to do the breastfeeding and then, and then he start noticing that I was getting sadder and sadder, and sadder, and then, until, until I got to a point that every time I was breastfeeding he knew I was crying. He said, “You can’t carry on like that. This is, this is not right. This is not right. Just stop it please”. Off he went, got the formula, got the bottles, made the bottle, and then he just went, “It’s fine, and then you could, you will be able to sleep at night. Come on”. And then he made it look like it was great, but to me it was just, I was devastated. I felt like, really like the end of the world like oh, like I failed, like a failure. 

Jessy felt let down by the existing information presenting only positive images of breastfeeding.

In my opinion, and they should let people know because a, I felt, I felt betrayed when you look at the, at the literature, [crying] at the videos, at everything, everyone is like happily. “Oh, yeah, you just pull it out, I go to the park, I breastfeed. It’s like a happy moment and everyone talking about the bonding. And I couldn’t, and I couldn’t - and it made me feel really bad. So I, I still, I still, it does, still makes me sad as you can see. And yeah, I wish they could show the both sides of the coin, like, yes, it’s nice, yes, you bond, but if you can’t then they should give you more support, like, yes you can’t do it, it’s not the end of the world, it’s normal, it can happen. Because that’s another thing, they don’t tell the, it, it doesn’t say anywhere that it can happen. 

Jessy felt under pressure by midwives and health visitors who expected her to continue breastfeeding despite the pain and poor condition of her nipples. Later, a health visitor supported her decision to stop breastfeeding.

And their target was that I was a mum that must, mum must breastfeed, no matter what. Her nipples were bleeding, it doesn’t matter. She was in pain? It doesn’t matter. She was almost getting post-natal depression from all the stress? It doesn’t matter. She must breastfeed. And that’s what, what I felt like it was really terrible. In, in fact I got, they got like, they were turning up at my house, they were calling me, like every so often to check that I was breastfeeding. Then, the last thing it was, the last straw was that they make me pay to a woman to come and give me a personal lesson in breastfeeding.
 
So I was just like and then and my husband at that time, he stepped up and then he, he basically kicked them out and said, and sat with me and said, “What are you doing? You should stop, this is not good for you”. And then it was lucky when the midwife hand me over to the health visitor, one of the health visitor was really still like pushing me, pushing me, “You must breastfeed, you must breastfeed, you must breastfeed”. But then the second health visitor came to me and say, “Listen, the most important thing is a mummy’s OK. If the mum is not OK, how are you going to look after your baby? So don’t worry, my children grew up in, on formula, OK? And, don’t tell anyone I said it, I said so”. And then it was all, OK so she makes me feel better. 

Jessy felt ignored at the baby café she recently went to with a friend. She said such places should also offer support to women who couldn’t or wouldn’t breastfeed.

You know you have these baby’s café for people who are breastfeeding and they have issues with the breastfeeding, and they give support to the people who is breastfeeding I think they should, they should also give support to the people who hasn’t been able to breastfeed or the people who chooses not to breastfeed because as soon as you say you’re not breastfeeding like - I had this experience actually last week. I went to this baby café with a friend who had a baby and she’s breastfeeding and I was, I put my name on the list and then they completely ignored me because I wasn’t breastfeeding. But they could have come to me and say, “How are you feeling? Is the formula working? Is there anything we can do?” Because I got so many questions about formula as well. “Which one is the best formula? Which one do you recommend? Which one is, is do you think is, is better for a baby this type, that is a really hungry baby”. Nobody gives you support, it’s like, “Well you’re on your own now, you’re not breastfeeding? Well, pfft, see what you do”. It feels that way and even like when I went to the café and I saw this lady, the lady that I went to workshop, she came to me and say, “You’re not breastfeeding, awh” And it’s like, “What awh? Don’t, don’t treat people like that. Like why would, why would you be like, awh [laughs]. It’s no, it’s not something to be sorry about it like you should…
 
I don’t know, there are so many questions I had and the fact that I felt ignored, I didn’t feel like - like, brave enough to approach the lady who was leading the café and ask them these questions. But it is a mother and baby place regardless if you’re breastfeeding or nothing, the support should be given. It’s kind of like - This time I haven’t felt so much because I think I’m standing my ground more into the bottle feeding my baby. But the first time, I, there was, every time, people ask me, “Oh, are you breastfeeding?” and I say, “No, no I couldn’t”. “Oh”. And it was this, ooh, this sense of like I was wrong. I was a wrong, a bad mother because I wasn’t breastfeeding. But nobody ask me before why not, or just accept it, it was this judgment thing, this judging. I felt completely judged all the time, [laughs] because I wasn’t breastfeeding, but if you can’t, you can’t. 

Health practitioners should tell women that breastfeeding sometimes doesn’t happen, and to be more supportive of mothers who use infant formula.

I would like them to be like to be honest, like when it’s, especially from the, from the moment they are talking about breast is best and nah, nah, nah, I would like to have, to also talk about like sometimes it’s not possible. And make sure that people know that sometimes it’s not possible. Because I truly believe that it was, it was me choosing not to breastfeed like being, like chickening out because of the pain. And maybe the pain was part of the thing and it was something I was doing wrong.
 
And it wasn’t it was just I couldn’t physically do it. Then I would like them to be more open with persons like us. I know the target is to get as many people as they can to breastfeed but the hard thing, the ones that want to breastfeed and can’t. It’s hard, it’s hard to recover from that one. It’s - and you aren’t, you’re having these hormones all over the place [laughs] so it doesn't help like if you’re having somebody bashing you because you can’t breastfeed. It would be nice if there is that kind of support as well, and there is some support for moms who are, who happen to have to give the babies formula. And there is more information about formula. If you look at, if you look in the GP practices you will find everything about breastfeeding, the type of food you have to eat and all sorts of literature, DVDs, leaflets, photos, photocopies, everything. When you’re trying to find information about formula, nothing. And then it’s kind of like you feel ashamed of asking as well because it’s wrong. It seems to be wrong. And it’s not wrong like how many children have grown up on formula and they are happy, healthy, successful and - I don’t know why do they have to like, it’s like a myth, it’s like I don’t know. It’s terrible.