Maternity Experience

Informed Choice

When “Normal” Seems To Be The Hardest Word

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On Wednesday I attended the NHS Expo in Manchester as part of the #MatExp team.  During our session a few of us stood up to explain what the campaign means to us.  My personal bit went as follows:

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It is this combination and collaboration of so many different people, from across the maternity world, that makes #MatExp so exciting to me.  So many conversations are being had within established communities – midwifery conferences, positive birth groups, obstetric organisations, mother & baby groups, but with this campaign these communities are coming together.  And as I say, we are not shying away from the difficult conversations.

With this in mind, I decided to broach some subjects on the #MatExp Facebook group that could be considered “difficult”.  I was unsure with which to start, and then this tweet from Emma Sasaru launched a conversation this morning and I just went with it.

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What has followed today has been a thought-provoking discussion that has challenged many of my assumptions and made me change my mind more than once.  As with the best discussions, I am still not sure what my conclusions are but it has given me new perspectives.  The original question posed was:

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The blog posts I refer to are Sheryl’s birth story on my own blog, and Southwark Belle’s piece entitled “Normal Not Normal“.  I then went on to observe that when I hear the phrase “normal” birth I am imagining that people simply mean “vaginal” birth.  Is it as simple as that?

Well no, no it isn’t.  It quickly became apparent that there are a couple of definitions of “normal birth” available.  One group member explained that “Interestingly, one of the first definitions of normal birth came in 1997 from AIMS, the radical women’s organisation, who defined it as ‘a physiological birth where the baby is delivered vaginally following a labour which has not been altered by technological interventions’. So this was a movement that was led from a women’s organisation to counter the over-medicalisation of birth.”

And from this 2010 publication:

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And from this in 2007:

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It seemed that the word “normal” had specific meanings for groups researching and monitoring maternity outcomes, and that this was a discussion that had been had many a time.  Indeed, Sheena tweeted this morning

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So why is it such an important and emotive discussion?  Well because we have learned time and again in #MatExp LANGUAGE MATTERS.  Words have huge power and different people understand things in different ways, depending on their experience, perspective and knowledge of the subject in hand.  Declaring that some types of birth are “normal” begs the question what are the other types of birth then?  And if the opposite of “normal” is “abnormal” are we comfortable telling women that is how we define their experiences?

It was clear that for many women the term “normal” is perceived as carrying a value judgement.  It is not simply a medical or scientific definition, it is a statement about them and their experience that allows for feelings of failure and inadequacy (as with so much to do with the massively emotive subjects of maternity care).  Comments included:

where I work in a different area of healthcare, it’s understood that everybody’s normal is different, my normal vary vastly from your normal, but there is a range of normal we would expect that to be in. Having babies is different imo because you are doing something you don’t do very often so it’s difficult to define your ‘normal’ and where that might fall on the large scale of normal within birth. It can lead to people feeling inadequate.”

“the feeling of doing it wrong, not experiencing a normal birth can put people off  a second time. A friend of mine is terrified because last time it all “went wrong” and she’s adamant that she won’t get pregnant again unless she can have an elective section because her body can’t do it properly.”

Who has set the definition for normal. How do we know what normal is? How did women birth 20, 50, 100, 1000, 5000 years ago? What about culture? What is normal here may not be normal in other lands, races etc. Normal is an awful word because it gives the idea everything else is abnormal so therefore not right or not as good or missing the mark. But that is harmful label to add to a birth experience for many many reasons.”

By terms such as ‘normal’ we make women believe that if they don’t attain that they have not done something they should. That in turn may make them feel they have ‘failed’.”

Emma kindly provided a dictionary definition of the term and observed that “its definition doesn’t relate to birth in any way”.

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And of course there is also the fact that our definitions here do not match up.  The definitions of “normal” birth explained above are not currently “standard, usual, typical or expected” in the UK as per the dictionary definition of the word.

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One doula observed “Normal is the wrong word to use because right now a positive physiological vaginal birth is NOT the norm”.  So is there any value in naming it as such when by a simple dictionary definition that could not be further from the truth?  I think there might be, but more of that later.

BirthChoiceUK addresses the issue on their website (read the full page here) and explain that “The term normal birth is not meant to be judgmental in any way. We are instead trying to produce some measure of how much technological intervention is currently used in birth. These statistics of course do not tell us anything about a woman’s experience of birth which is likely to be of far more importance to her than whether she was induced or had an epidural or had her waters broken. It is hoped that every woman can have a fulfilling and positive experience of birth regardless of the interventions she has received. This is, of course, much harder to measure!”

And where does birth trauma come into all of this?  What of the women who have had negative experiences of birth?  What can the word “normal” possibly mean to them?  And for those women who have had a “normal” birth as defined by the NCT and AIMS, are they still entitled to feel traumatised if their experience was not a positive one?  It was discussed at length that so many apparent problems with the language come from individuals conflating the words “normal” and “positive” but throughout society we find people and cultures who believe that the two are one and the same thing.  “Normal” is a generally positive term, meaning good things, which is of course a whole discussion in itself.  Nevertheless it is easy to see how a woman with a negative birth experience will not thank you for telling her the birth was “normal”, and how a woman who has had a positive experience will be unhappy with the idea that hers was not a “normal” birth.

So apart from the need to gather statistics across maternity units, what other uses does this idea of “normal birth” have?  Midwife Jenny Hall was kind enough to explain “The need to differentiate what is ‘normal’ and not does come down to the legal responsibilities of a midwife. A midwife is in law able to care for women without other health professionals until the process moves into areas outside the boundary of ‘normal ‘. She then legally has to refer to someone else for assistance.”  There is then an important legal issue here, and other birth professionals on the group emphasised that for them the term held no value judgement at all:

I think of normal birth as a spontaneous vaginal birth with no intervention at all, but I’m a midwife and we use these terms as classifications rather than attributing any value to them…… When I talk about normal I’m not using it in a judgemental way, just descriptive, but I am mindful that many find this term difficult.”

Yet throughout today I have had the creeping suspicion that two of my viewpoints don’t match up.  I was questioning the use of the word “normal” for a maternity experience that is how human females have been designed to birth their children, yet I am constantly banging on about the need to “normalise” breastfeeding.  An uncomfortable feeling of double standards was edging up on me.  Giving the whole subject a bit more thought, I commented:

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For the #MatExp “heart values” please read Emma’s blog post.

This angle is well articulated by Professor Soo Downe in her interview with midwife Sheena Byrom:

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Miranda Dodwell of BirthChoiceUK was keen to emphasis the historical perspective: “having been working on the ‘normal birth’ agenda since about 2003, I realise how far we have come to be having this debate.”  She recommended further reading in the shape of Practising childbirth activism: a politics of evidence “about the importance of introducing the concept of normal birth in terms of childbirth activism in driving change.”  However, she and others were happy to discuss the idea that it may now be time to move on from the concept of “normal birth”, despite “the power it has had in creating a change of perspective towards women’s experience of maternity care“.

If we are to move on from this terminology, what are the alternatives?  Both in terms of new words and in terms of new approaches?  There were a number of suggestions from birth professionals:

Unassisted birth would probably be closer to the mark but the meaning is associated with ‘free birthing’ these days. l guess for me ‘normal’ could be what the woman was expecting and not our version of normal.

When I hear the ‘normal’ discussion and how heated it gets I don’t have a satisfactory alternative to the word ‘normal’. Physiological?…bit of a mouthful and a challenge to spell. Vaginal? Many struggle to include the word vagina in general conversation so possibly unacceptable?

Rather than focussing on ‘normal’ l tend to look at how satisfied the woman is with the outcome. It’s her birth so she should define it.”

I tend to use words like ‘physiological’ and ‘needed help’ or ‘complicated by’. Rather than normal, which has different connotations.

I use SVD (spontaneous vaginal delivery), assisted (instrumental) delivery or Caesarean

And from parents:

From the point of view of mums talking to each other about their births… I’d say ‘normal’ is too vague, fairly meaningless, and not generally used. ‘Natural’ is used a lot.

Physiological’ may be technically correct, but sounds so much more excluding than a two syllable simple Anglo-Saxon word. ‘Natural’ also has a lot of judgemental baggage.”

Personally, I think maybe the accessibility of the term normal is what’s become problematic about it? ‘Physiological’ seems more medical, so perhaps using this term would prevent women feeling judged?

But as you can see consensus was hard to come by.  Amy Prodgers (@BirthSalford) summarised, I suspect, the feelings of many in the discussion:

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As a possible, and remarkably simple, solution, one of the group’s midwives suggested “Why not use the term birth? And let the categories be an additional ‘box to tick’ not together with ‘birth’ am I making any sense??? So ‘birth of baby boy’ (male infant etc etc) then tick, vaginal/forceps/water-pool/home/hospital and so on and so on) – the word birth describes the event – that’s exactly what took place #languagematters. It’s just habit in maternity services, it could easily change – the hospitals/birth centres/ organisations etc could still get the much needed figures”.

Southwark Belle furthered this thought “I think we’re now at a stage where defining one set of choices/circumstances as ‘normal’ / best and using that to set targets just risks swapping one dogma for another. I much prefer treating it all as birth and each intervention individually rather than lumping a whole lot of things in together.”

So is birth just birth?  Each instance its own unique set of circumstances and experiences?  Can hospital notes and databases possibly be built with this in mind?  Can statistics be gathered on this basis?  Does the biological, historical way of giving birth need to be normalised to the benefit of families or are all modern options equally valid and ‘normal’?

This comment stands out for me, from Seana McCoy Talbot (an NCT volunteer who is standing for election as NCT President):

“Our starting point always has to be compassion and empathy, but also to know the evidence.
It’s instincts plus knowledge.
Heart and head.
Art and science.”

 

@HeartMummy 2015

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Putting the Heart into Matexp – Heart Values

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A while ago we decided to pick six words that we felt really summarised Matexp. As with the healthcare six C’s, we very much wanted our values to reflect what we feel is important to a good maternity experience both for families and staff. So with this in mind, the six values we chose were;

Choice

Kindness

Language

Respect

Dignity

Compassion

We set about asking everyone on facebook and twitter what each of the values meant to them.

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Choice

Our first word was choice and we knew when it comes to maternity experiences is so important to families. So what did everyone say about choice?

“Choice to me means having the same services and facilities available to all women. Birth experiences shouldn’t be a postcode lottery.”

“Choice to me means being presented with the correct information so you can make an informed decision. An informed decision is an empowered one.”

“Choice means to me, that all women whether low risk or high risk have access to the same facilities & are given the opportunity to make an informed decision to choose how & where they birth without judgement or pressure even if it is not medically advised.”

“Choice to me means that we give families accurate, unbiased info so they can make a informed choice that is right for them. Then support them in that choice. 

“Listen, really listen to women and let them pour out their heart and get to know what they need to make their birth what is right for them.”

“Choice is about being given all the information you need to make a decision in an unbiased, non-pressurised way.”

“Choice is being told the benefits and risks associated with each option. Choice is being told the benefits and risks with your alternative options (it’s very rare that there is no alternative option).
Choice is being told what happens if you simply do nothing. Choice is knowing how decisions made now will effect your future, I.e.surgery can have implications on future pregnancies. Choice is being able to consider all the information in relation to your own individual situation/ beliefs/ personal history, allowing time for you to make a rational decision. Choice is having balanced open informative discussions feeling that your decisions are supported and not judged. There is no ‘we are just going to’ or ‘we will’, choice is the individual making the decisions.”

We were reminded of nice guidelines for discussing risks and benefits and also CHOICE top tips for maternity care providers.
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Another really interesting point was raised about choice,

“In some circumstances there are no choices, and support needs to be given to those mothers who have had their choices limited or removed.”

Sometimes we may have no choice, in that due to circumstances beyond our control we may have to give birth or accept a situation that is far from the choice we would have made or choices have to be made for the wellbeing of mother and/or baby.

“Following my daughter’s death I have questioned the decisions we made many times wondering if a different choice may have meant she’d lived. In my subsequent pregnancies the feeling of responsibility to make the right choice has at times overwhelmed me and made me very anxious. In lots of ways I’d have preferred to have just been told what was going to happen.” 

It was also raised that choice means accepting the consequences of the choices we make, both as staff and as families. Sometimes this can mean impossible questions that may never be answered.

“Sometimes we are given the illusion of choice. How information is presented is so important. Manipulated or coerced compliance can be made to look like choice. Yet, within maternity services, it’s hard to challenge this. Some caregivers reveal their own opinions in how they phrase information – about whether induction, or cs, or epidurals have risks, for example. This sometimes is presented differently to data about home birth, or vbac, or physiological third stage.”

What did become clear was choice must be Clear, unbiased, informed and not an ‘illusion’. That families didn’t want those responsible for their care to manipulate information or data to coerce a choice that they felt was right. Instead information given should allow for families to make choices that were right for them.

Yes when it came to choice, it was evident how important this was to a good maternity experience.

Kindness

Next we chose kindness. While many things matter during birth, simple acts of kindness can leave lasting impressions and mean so much.

“True kindness is something you give without expectation of any kind of return, not even a thank you. It’s instinctive and comes from the heart and will always benefit another heart. You don’t have to touch, smell, see or hear it but it can awaken your senses and light up your soul. It’s something that both the giver and receiver benefit from.”

“Kindness to me also includes understanding- even if you don’t make sense or or thoughts are irrational. It’s such a confusing time, someone being kind and saying ‘it’s ok I understand’ means the world.”

“Kindness is SO important. I have met many kind midwives and each time a small gesture has been performed it has meant so much. I will never forget the midwife who made me a cup of tea in the small hours after Luka was born. I was literally (emotionally and physically) broken and her kindness fixed me up enough to carry on.”

“In order to be truly kind one needs the time to be kind. How many people are in such a hurry during their day, under too much pressure or thinking of the next job, to afford true kindness? Kindness means kind words but it also means listening, accepting & acting on the kind thoughts. If you see a person in distress, true kindness is actively easing that distress both verbally and practically.”

“Kindness should be in everything we do. We should treat all women with kindness because it’s the small things that matter too. Even the most difficult, hard and situation can be made a little easier when we are shown kindness. People remember kindness and if we truly seek to show kindness it will affect how we care for women. I believe it should be one of our inner values that we keep and not allow the culture to eat away. It costs nothing and yet can have the biggest effects.”

“Kindness is being empathetic and showing the person that you understand how the person is feeling and showing that you care and that you understand.”

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“A quick Google search says “Kindness: the quality of being friendly, generous and  considerate.” Generous is an important one. To be kind, in my opinion, means to give of yourself, to do something that takes a bit of extra effort. To deliver a home cooked meal to a family with a new baby is kind. To offer to take baby for a buggy walk whilst mum has a nap is kind. To make a busy parent a cup of tea is kind. To be generous with your time and your abilities is kind. As for “considerate”, this is the one where language is important. Consider what language you are using and the impact that can have on a person. Speak with kindness, aim to boost a family’s confidence and pride rather than to leave them confused or with feelings of inadequacy. Consider how you would wish to be treated in the same situation. Consider what you know of the family and the impact those things might have on their experience.”

So kindness was a valued part of maternity care and many expressed that kindness had made a real difference to them, however small the act.

It was also raised that it is important to also show kindness to those who care for women.

“As families we must not forget that there are times for us to be kind. To be friendly or at least polite. To drop off a box of chocolates on the ward to say thank you. To donate some items to the hospital. To raise money for units that have cared for our children. If we have been fortunate enough to receive kindness we should remember to pass it back or pass it on.”

Yes Kindness in words and deeds really does make for a good Maternity experience for all.

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Language

Language is something that is discussed a lot in Matexp, and something that is very important to so many. Language has the power to build up, encourage and empower or to tear down, increase doubts and intensify fear. The words we use can leave lasting impressions.

“Language sets the tone for every experience. What is said, translates into what we hear and that affects how we feel. Being told I was 2-3cm and could go home if I wanted to it was ok. But what I heard was, I’m a failure, I’m not progressing, I’m wasting everyone’s time. It didn’t matter what was said to alleviate those worries, they were now engrained. Also, the word normal is a horrible word and should be replaced with various other descriptive words that can resonate more with the mother. Language is communication, understanding and respect.”

“Language is about reducing the distance between provider and parents and creating a collaborative ‘us’ rather than ‘them’. It’s as much about listening as talking, and it’s about choosing words that come from kindness, even if we can’t avoid the risk that they’re not always received that way.”

“It’s not just the words themselves (although these are important!) but also how it’s delivered. Positive phrasing is important we need to ban certain phrases IMO! A big cultural shift around certain stock phrases is needed. It’s about having a two-sided conversation/discussion in relation to decision making ultimately with the individual involved making the decision with all the facts available, I.e. looking directly at a person when talking, hello my name is campaign, doing admin once individual left room rather than spending lots of time looking at screen or doing paperwork etc.”

“For me language and the way we use language can convey so much. It should always be used in a kind way mindful of the person and their situation. Listening is so important as is thinking about the words we use. Our language should convey that we care, are interested, want the best for that person and that we are genuine. It shouldn’t be harsh or critical or brash.”

“If you can’t say anything nice, don’t say anything at all. Don’t fill silence with platitudes. Judgement is implied in so many statements unwittingly uttered when they fall on the ears of person who is suffering / has suffered a trauma. Instead hold a hand, mop a brow, smile, rub a shoulder but be so careful. It’s easy to say “well you are mum now you’ll put your baby first…” wh
en a new mum admits she feels awful, it’s said without malice, as a statement of fact as you see it BUT to the traumatised mummy it can say something different. To me it said “selfish mum, thinking about yourself, crap mum can’t do it” and so I hid how bad I felt and went home with retained placenta and developed sepsis. Think before you speak.”

“Words need to: be positive, encouraging, soothe, be honest, kind, compassionate, open, have empathy, be professional, clear and simple and always respectful. 

 

11886136_1178669428816993_3536750296379664307_oWords without: 
Attitude
Contempt 
Judgement or jargon 
Chat ‘with you’ not ‘to you or above you’
Words should not be dismissive or exclusive 
Words of kindness always…Words are but leaves, deeds are the fruit.” 

“The words we use provide the framework for our thinking. I can tell by the words you use what you think and therefore feel about me. Language is about communicating. We need to develop and agree a shared language to do this well. I don’t really care what your “correct terminology” is unless we have established what it means to us in this relationship. If you are not sure what words to use let’s talk about it. It’s a great way of building trust.”

“Language for me is one aspect of communication and facilitation and if we use it with the aim to facilitate then we are on the right track- this means personalising for atmosphere, experience, individual on a moment by moment level. And we must match the language with all other aspects of communication otherwise it is hard for women to trust in us as the words we use seem at odds with body language etc. Language should be used to empower, inform, educate, provide choice in a non judgemental safe, exploratory non defensive manner. That is the ideal. Consent, not coerce, create chances for inclusion in the care relation ship and take care in the words we choose- as said above we all take things in different ways, but if we are authentic in what we say then that’s a good start.”

Two words in particular that came out as needing to be thrown into room 101 and these were;

Failure   and   “incompetent”

 Language is a very important Heart Value. We need to think about the words we use, but also the way those words are used. Language can greatly affect birth because words are so powerful.

Respect

We would think that respect would be an obvious part of a maternity experience, but sadly many women and staff say they feel it is lacking.

“To me respect means an absence of any type of prejudice. It means getting to know the individual, not treating everyone the same. Acknowledging the family’s history, experience and their knowledge and understanding without making assumptions. Respecting the mother’s decisions as much as her body.”

“Respect is valuing people and listening to/valuing their opinions even if they differ from yours. Finding a way to use these collaboratively when making plans. This respect should go both ways too, no point looking for respect if you’re not giving it.”

R … Respect
E … Every one’s
S… Sensitive soul
P… We are just people
E…Eager to do our best
C… Careful how you say things
T … Two way communication needs kindness & respect.

“Due regard to the feelings or rights of others is where respect really hits in #MatExp. We must give due regard to the feelings and rights of families, whatever our personal views or experiences.”

“Avoid harm or interfering with” – another crucial one. Sometimes these feel mutually exclusive in some areas of #MatExp – can we avoid interfering with mothers and babies but still avoid harm? If in doubt, we go back to respecting the feelings or rights of others. And of course we have to consider whether the baby has rights as well.”

“Respect is valuing the person’s point of view and valuing them as a person. What they want, what they feel and this should be discussed with the woman. Actually to define respect is not that easy. I was thinking how the medical profession has commanded respect and still does and it is very aligned to value.’

“Based on my personal experience, respect is knowing and understanding that this is MY body, MY pregnancy and MY baby NOT yours (health practitioners); hence LISTEN to me, give me OBJECTIVE information to help me to make ‘INFORMED’ decisions and FIGHT/ADVOCATE for my wishes. Don’t give me your opinion if I haven’t asked for it and recognise my birth doesn’t fit round your schedule but the other way. And everything everyone has said so far.”

Respect also encompasses staff and the environment they work and care for women in.

“The first part is the respect I hope all birth professionals command, as they are doing an amazing job.”

“Agree to recognise and abide by”. Do all of the guidelines and protocols in your hospital or birthing centre command respect? Do you respect family’s birth plans? Do families respect your recommendations? Can all of these things be married together? Respect encompasses a huge amount of concepts. We all want it and we’re often slow to give it.”

“It also means respecting each other as staff, working as a team and supporting each other’s roles. Respect also included speaking up when we see wrong attitudes or treatment. It also means the respecting of other view points and realising we can all have different perspectives and that’s ok.”

Respect for women, their families, beliefs, choices and needs MATTERS. Staff too need respect for each other and but also afford respect for the amazing job they are doing.

Dignity

How can we respect a woman’s dignity in birth?

“For me dignity means, allowing me to make decisions without health professional over riding them and making you feel as though you’ve said something wrong.”

“For me respect and dignity come hand in hand. Whatever happens if you have treated me with respect I will be able to preserve my dignity. Labour and birth put you on a very vulnerable place and being respected means whatever procedure or conversation takes place involving very intimate issues, I will feel like I am a human being rather than a problem or hinderance, or worse still, like there is something wrong with me, which is my fault, not a result of the circumstances.”

“Dignity is treating me in a way that doesn’t make me feel I’ve outstayed my welcome on the maternity ward.”

“For me, dignity is about human rights, and human rights are about being treated with respect…a pregnant woman or a woman in labour is entitled to her human rights being respected at all times, and she is entitled to be treated with dignity…there!”

“Recognise that respecting privacy, DIGNITY and autonomy is not an addition to care provision, but an integral part of good care…”

“Being spoken to as a competent adult rather than a naughty child, people introducing themselves before touching me, people remembering I am a person not just a uterus on legs.”

In fact this summed Dignity up perfectly.

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Compassion

Last of our Heart Values, but by no means least, is Compassion. Some would argue that compassion alone is the single most important thing we can shown women in a maternity experience, if all care is based on compassion then it will encompass all the other Heart Values.

“To me compassion is seeing a person, realising that they are in need of not just your medical care but your emotional support, kindness and often just to know you actually care. It involves thought, as it can be such little things that make a difference. Think, if this was my daughter or sister how would I want them to be cared for ?”

“Compassion to me is always about time, the extra couple of seconds to smile at someone who looks worried; the couple of minutes to listen to someone who has a question or to ask someone who looks lost on a corridor if they need help; right up to the tasks that take a lot of time.”

Do we see compassion in maternity?

“When I was very sick waiting to have Joseph no one had any time to just sit with me, so the staff got a student midwife to sit and hold my hand. I’ll never forget her kindness. So even if there is no time sometimes there is another way.”

“I was really surprised when I was critically ill. I had a midwife refusing to leave as I was so poorly, she made sure she was my midwife 3 nights in a row. I had so many hugs from so many doctors, midwives, health care assistants I can’t count. I had my 27 weeker in an LNU rather than a Level 3 and they pulled out all stops so we could be cared for close to home.”

“One of my favourite consultants wasn’t even one of mine. Every day he would see me going to Joseph (over ten weeks) and give me a hug and tell me what a lovely mum I was. He was a huge support to me and probably had no idea.”

“For me, it was when one of my consultants told me “your baby *will* be premature”. I started to cry and she put her hand on my arm. It was such a human touch and I was so grateful. But I’m guessing that’s generally not encouraged, whereas for me, it meant so much: it said, I understand and I know this is hard. For me as well, it was when I finally left the hospital and one of my midwives gave me a big hug.”

“It was the array of midwives who looked after me for 10 days talking to me and making me feel almost as if I was just in a second home (ha I was in for 2 weeks which felt like a long time).”

“It was all the consultants who I had come across, always stopping when they saw me to ask how I was and how baby was doing. It was consultants who came to find me the next day to see how I was doing post c sec.I didn’t really expect that, as they must all be very busy people, but they never gave that impression of being in a rush etc.”

“I had so much kindness and compassion when I was in hospital with Joseph, my favourite was the day after Joseph was born, he was ventilated in NICU and I was in my room. I knew I couldn’t see him that day, and had been warned it would be Monday, this was Friday. I quietly crying and the obstetrician reg Charlie came in and said “why are you crying” and I said “I’m fine, I’m hormonal and still very ill and just feeling a bit sorry for myself”. He said “Nonsense, you need to see your baby and I WILL make it happen”. He spent hours organising everything to get me to NICU to see my baby, I will never forget his kindness and him realising that was what I needed, and being prepared to make it happen.”

Can we as families show compassion to staff?

“For staff I believe we should remember the hard work they do and commend them for that. Also be respectful to them. Also compassionate towards each other as a team. Help each other, treat with respect, and value each other’s gifts and abilities. Compassion I truly believe goes a long way when it comes to improving Matexp for all!”

“Immediate thought: always offer your midwife or health visitor a brew when they come to your home, coz they work bloody hard smile emoticon And we know that in the UK tea = compassion.”

“Give thanks and praise where it’s due, people are so quick to complain but never to give thanks. For HCPs, spend 1 moment before each meeting to take a deep breath, rid yourself of other thoughts and allow all focus to be on the couple/Mama you are going to speak with/assist.”

“One of the biggest revelations I’ve had this year, during a fairly turbulent time, is that it is impossible to practice compassion as a HCP towards women day in day out unless you also practice self-compassion.”

“This thread has inspired me. Tonight the children and I are going to bake a big chocolate cake and then tomorrow deliver it to the Labour Ward as a thank you to all the exceptional midwives who work so hard there.”


So those are our six Heart Values. These values are the heart of Matexp, they permeate the actions we make to improve maternity services everywhere.
The Values will continue to grow and expand as Matexp does too.

Thank you to everyone who shared their thoughts and ideas with us. We had so many it was impossible to include every single one here, but we hope all the above comments capture the thoughts of women, families and staff.

Matexp is amazing and will make changes for families everywhere. A woman will remember her birth for the rest of her life so lets make sure we do all we can to make her maternity experience one she remembers for all the right reasons, which we can if we remember our Matexp Heart Values. Lets but the heart into Matexp.

 

Emma Sasaru

 

 

 

 

 

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Time to Act for Continuity of Care

There have been some fantastic conversations taking place on the MatExp Facebook group, with lots of ACTION threads being posted to generate discussion. The aim of these discussions is to identify ways that we can ACT to improve maternity experiences. Big, long-term actions that might require system change or a change in culture. And small, immediate actions, that professionals and individuals can take today to improve the maternity experience of those around them.

Over the last six months two big themes have emerged from #MatExp for me. The first is WHY are so many age-old issues still a problem for maternity care in this country? The answer to me is the working environment midwives face, as discussed here. The second is HOW can we make a real difference to family’s maternity experiences? So many actions have come out of #MatExp but the one that stands head and shoulders above, in my opinion, is continuity of care.

I don’t mean Ed Milliband’s diluted version of “the same midwife throughout labour”. I mean the same midwife antenatally, during labour and postnatally, or the same team of two or three midwives for the whole of that period. Women who hire independent midwives or who have access to OnetoOne Midwives have this type of continuity antenatally and postnatally, but they only have those same midwives during labour if they give birth at home. IMs and OnetoOne are not insured to act as midwives in hospital settings, although they can accompany women to hospital as advocates. Doulas are also with women as advocates and support for the whole of their pregnancy, birth and postnatal period but they are not qualified to act as midwives.

Continuity

When I brought up continuity of care as an ACTION thread on Facebook, I asked the following questions:

  • What are the barriers to providing continuity of care on the NHS? Is it as simple as not enough midwives, or is there more to it than that?
  • As an anxious person I really prioritised continuity of care, so used an independent midwife in my first pregnancy and a OnetoOne midwife in my second. What would my options have been on the NHS, under what circumstances can women be put onto a one-to-one care pathway?
  • What ACTION can we take to make continuity of care a reality?
  • What ACTION can we take to build good relationships between women and their midwifery teams where continuity of care is NOT a reality?

The suggested actions from the discussion that followed were:

  • Demonstrate the benefits of caseloading to NHS midwives
  • Strong leaders at the helm of trusts who themselves understand how to implement and lead their midwives into wanting continuity of care
  • NHS trusts to talk to independent midwives and social enterprise midwives who are the knowledgeable ones when it comes to providing continuity
  • Think about options for a team approach. One group member directed us to look at the Streatham Valley midwife team: “They were part of a pilot scheme for community midwives where you saw the same midwife and often they came to you for booking in and later appointments. They also checked you at home when in labour to avoid wasted trips to hospital and they have an excellent home birth record. Out of my ante natal group of 5 first time mum’s none of us had anything stronger than gas and air we had one home birth and only one use of forceps. They are amazing.”
  • Understand the positive impact that continuity of carer can have on patient safety and infant mortality
  • Find ways to care for midwives and avoid the “burn out” that is often associated with a caseloading model of working
  • Women with more complex pregnancies to be caseloaded by a team expert in their complexities – in other words, being at a higher risk of complications should not exclude women from continuity of care, in fact if anything these women need it more
  • Consider personalised budgets ( i.e. the NHS would allocate a woman funding to choose the service they wish) and whether or not this concept could help in delivering continuity of care
  • If continuity is not available then note-keeping needs to be excellent so women don’t always have to repeat themselves (which can be particularly hard following baby loss), and so that plans can be discussed and followed up
  • Women who are vulnerable or at risk of perinatal mental health problems should be at the front of the queue for continuity of care
  • Ensure that families are aware of and understand any choices they do have when it comes to their maternity care team

One healthcare professional commented “The commonest refrain you hear from mothers these days is ‘I never saw the same midwife twice’; this is a great sadness to me as surely the greatest gift to mediate the stressful vocation that is midwifery, is the relationship you develop with your ladies.”

Another woman who had opted for independent midwifery care in her second pregnancy commented “I just needed to know that someone was going to know me personally and take my wishes/needs seriously.”

Continuity of care was the strongest theme in the feedback to the National Maternity Review provided by my private Facebook group. It comes up time and again in discussions – I was discussing it today with student midwives at Salford University and they agreed that many midwives want to work to a caseloading model as much as families do. It just has to be constructed in a way that makes it feasible for midwives, many of whom have young families themselves.

Campaign for Choice
Campaign for Choice

This is not news. The RCM’s Better Births campaign has continuity of care as one of its key themes. The demand for caseloading from families accounts for the popularity of OnetoOne midwives in the areas where they are commissioned. A group of mothers in Greater Manchester is campaigning for the local CCGs to make this service available to women, and as someone who has benefited from that company’s care I joined them on a demonstration in Manchester city centre. If continuity is not going to be available on the NHS then OnetoOne might be the best option for families, although as this post of mine shows not all women find that the various services work together. 

What I find striking is how much continuity of care would impact on other areas where the #MatExp campaign has asked for ACTION. Anxiety is reduced if women know their carers. Emotional well-being is improved as are infant feeding outcomes. Dads & partners have more chance of being involved and having their own struggles recognised if they are able to get to know the family’s care team. It will be far easier for midwives and health visitors to collaborate if it is clear who is looking after which families.

I was delighted when an insurance solution was found for independent midwifery in this country. I also have high praise for the model of care provided by OnetoOne. Support and advocacy from a doula can be invaluable. But continuity of care should not be on the periphery of the UK maternity experience. It should BE the UK maternity experience.

 

Helen Calvert

@heartmummy

2015

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#Matexp – Taking action on improving Tongue Tie services.

There have been some fantastic conversations taking place on the #MatExp Facebook group, with lots of ACTION threads being posted to generate discussion. The aim of these discussions is to identify ways that we can ACT to improve maternity experiences. Big, long-term actions that might require system change or a change in culture. And small, immediate actions, that professionals and individuals can take today to improve the maternity experience of those around them.

One of the discussed topics was Tongue Tie’s, the effect they can have on feeding, but also the struggle to access help and support. So what is a tongue tie? How does it affect a mother and her baby? What can we do to ensure families access the support they need?

“Tongue-tie (ankyloglossia) is when the string of tissue under your baby’s tongue called a frenulum, which attaches their tongue to the floor of their mouth, is too short or tight. If your baby has tongue-tie, it can affect the tongues movement, preventing it from moving freely, this can cause problems with feeding, either at the breast or a bottle, speech, and moving on to solid food. Tongue tie can vary in degree, from a mild form in which the tongue’s movement is only slightly impaired, to a severe form in which the tongue is completely fused to the floor of the mouth. Feeding difficulties may arise due to the inability to move the tongue in a normal way and therefore impacting on attachment, sucking, making a seal and removing milk effectively. Many tongue-ties do not require treatment. However, if the condition is causing problems with feeding, surgical division of the frenulum can be recommended and carried out as soon as possible. It is important that families receive support from trained people as not all tongue ties can be clearly seen and each mother and baby will be different.h9991638_003

How does tongue tie affect a mother and baby? If a mother is breastfeeding tongue tie can affect latching to the breast, in fact some babies are completely unable to latch. It can be difficult for the baby to make a good seal on the breast or maintain the latch during a feed. The results can be sore nipples for mom, static or loss of weight in baby due to poor milk transfer, this in turn can affect milk supply and maintaining breastfeeding.  Some babies feed inefficiently for a short periods of time, get fed up, fall off the breast asleep and exhausted, and then wake an hour later as they are still hungry, so that they are feeding almost continuously. Continuing to breastfeed can become almost impossible with the constant feeding, sore nipples and effect on supply. Babies can become exhausted, and so trying to feed becomes more difficult thus affecting the health of the baby.

With bottle-feeding babies, tongue tie makes it difficult to make a good seal around the teat. The suck is inefficient, and the feed can take two to three times longer. As the seal is leaky, babies will often dribble milk in varying amounts, thus not getting a full feed. As the milk leaks out, air can get in and is swallowed. Both breastfeed and bottlefed babies can be very ‘windy’ with the possibility of increased colic and irritability.

So Tongue tie can have massive consequences on both breastfeed and bottlefed babies. For breastfeeding moms it can mean the end of their breastfeeding journey can can affect their emotional wellbeing too.

So the question raised is, how can we support families and improve services for babies with a Tongue tie?

From the discussions on the Matexp facebook page there were three clear areas that were highlighted.

1. Clear pathways of care. Many commented and shared their experiences of lack of support. There seemed great differences in support available from area to area and it was not always clear where or to whom mothers should be referred to for assessment, diagnosis and division of tongue tie. Some commented that perhaps it should be part of the newborn checks for babies, while others discussed the wisdom in waiting a while to see how feeding progressed before doing a division.

Either way, what was clear was the need for all areas to have a simple, clear pathway to help families get the support they need.

  • These pathways should be known by all including breastfeeding support workers, midwives, health visitors, neonatal nurses, paediatric doctors and G.P’s, as well as parents.
  • The pathway should include trained staff to assess, diagnosis and divide tongue ties.
  • That there should be support post division for feeding.
  • Joined up working between private, NHS and voluntary organisations.
  • Actual acknowledgement of the effects of tongue tie, something some parents reported they did not receive.

2. Trained staff . Many of the comments reflected the fact that there seems to be little in the way of trained staff to assess, diagnose and divide tongue tie. Many reported that despite problems they were told feeding was going well and getting checked for tongue tie was difficult. Some reported having to pay privately for both the assessment and treatment, as there was no one trained available in their area.  Others commented on confusion between healthcare professionals regarding the signs of tongue tie and its impact on feeding, some commented that they were told that the tongue tie needed to be cut without any assessment. Also even when tongue was diagnosed many said they faced long waiting lists with no help to support feeding or maintain lactation. In areas where there are no trained NHS staff, there is no where to refer families to and so the only option is private care which has led to often a costly private market which many families are unable to afford.

So what actions were suggested?

  • All areas to have trained NHS staff to assess, diagnose and divide tongue ties.
  • Working together of NHS and private care to support families, provide services, if there is a lack of trained NHS staff.
  • Staff trained on what a tongue tie is and the signs, effects, it can have on feeding.
  • National recognised, agreed method of assessing knowledge, skills and training.
  • Regular weekly clinics to keep waiting times down.

pull-quote-alone

3.  Support. By far the biggest number of comments were about support. Families commented again and again about the lack of support for tongue tie. There was a big discussion regarding definition of roles, appreciation of roles and how this impacts on support given. Many felt they received more support from voluntary support roles than health professionals, but then found that support limited or not not valued. Others said they received no support at all which resulted in loss of breastfeeding relationships. Others said that due to lack of support with breastfeeding, tongue tie became the issue that everyone ‘hung their hat’ on as a magical quick fix but then were left with no post division support and felt left alone to get feeding established. One mum said she ‘wished someone had just listened’ because she knew feeding was not progressing ok.

So what actions came forward regarding support?

  • Always listen to the mother, if she feels something isn’t right remember she knows her baby best.
  • Full assessments of feeds by qualified staff to see if feeding is affected by tongue tie.
  • Information and awareness of the signs of tongue tie for HCP’s, and parents.
  • Support with breastfeeding is essential as often support to position and attach baby well can be enough to improve feeding and prevent the need for division.
  • Support for families who bottlefeed on ways to improve feeding pre and post division.
  • Parents need information and support to make an informed choice as to whether to have a tongue tie division.
  • Post division support with breastfeeding and follow up.
  • Help to support lactation, pump loan.
  • Specialist support for premature babies with tongue tie.
  • Appreciation of roles in both the NHS, private and Voluntary sectors. All working together to provide integrated care for families.
  • Clear definition for families and HCP’s on roles, who can do what and who can offer support.

Tongue tie can be a difficult issue that families face, accessing support, finding information and getting lost in the system can leave them feeling frustrated and let down. Of course we all wish we had a magic wand to instantly provide clear pathways, much needed training and support and also weekly clinics that enabled those that needed tongue tie divisions to be seen as soon as possible to lessen its impact. However, while at present support varies from area to area, what can we all do to help make changes to help families?

  • Write to your local MSLC, head of midwifery, head of health visiting, PALS, commissioners or NHS trust and tell them both your struggles to access help but also when you have experienced great support.
  • We can also build on good existing services or use these as a model for setting up services in other areas.
  • If your a HCP and suspect a baby has a tongue tie but are not trained or unsure then signpost or refer the family to someone that is. Find out what is available in your local area.
  • If your a parent that suspects your baby has a tongue tie and isn’t feeding well, seek help and keep on asking! Research tongue tie for yourself so you can make an informed choice and remember is not a quick fix but feeding will take time to settle and adjust after division.
  • As support workers, breastfeeding counsellors, IBCLCs, healthcare professionals and NHS Trusts let us all listen to families and work together to provide them with the care, support and services they need, to give their little ones the best start we can.

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Tongue tie support http://tonguetieuk.org/network/ 

Emma Jane Sasaru

@ESasaruNHS

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Time to Act on Infant Feeding

There have been some fantastic conversations taking place on the #MatExp Facebook group, with lots of ACTION threads being posted to generate discussion. The aim of these discussions is to identify ways that we can ACT to improve maternity experiences. Big, long-term actions that might require system change or a change in culture. And small, immediate actions, that professionals and individuals can take today to improve the maternity experience of those around them.

A topic I was keen to bring up was Infant Feeding, as Emma Sasaru and I are the “breastfeeding champions” for #MatExp (see our original “call to action” blog post). I was less keen to put together the subsequent blog post as it is such a huge and emotive topic, but I have finally put on my big girl pants and pulled it all together. The resulting post is in two parts: firstly, the actions and comments from the group thread. Secondly a little library of links to some fantastic blogs and articles that I really would recommend if you have an interest in this subject.

When I put up the thread on the Facebook group I asked the following questions:

Question 1: How can we ensure that every family is offered appropriate support to feed their own child, with respect to their individual circumstances?

Question 2: If you wanted to breastfeed but could not, was that due to a lack of appropriate support? If so, what support would have made a difference for you?

Question 3: If you wanted to breastfeed but could not, was that due to a medical issue that no amount of support could have alleviated? If so, what emotional support were you offered?

Question 4: If you formula feed, were you given good information about how to safely make up a bottle, skin-to-skin and paced / responsive feeding? As a healthcare professional do you have access to this information?

Question 5: Are all healthcare professionals now aware of and using First Steps Nutrition as their reference point for information about infant formula?

2015-07-12

A really interesting discussion ensued with lots of different experiences shared. The resulting action suggestions are as follows:

  • Far better infant feeding education antenatally – including what to expect, normal newborn behaviour, cluster feeding and safe & effective formula/bottle feeding. Explain that breastfeeding is a skill that mum and baby both have to learn and that it is difficult, but it does get easier. Emphasise the importance of asking for help and support.

  • If a family wants to breastfeed it is worth finding out whether anyone else in the family has done that before. Breastfeeding is much harder when those close to you do not understand it or are distrustful of it.

  • Don’t be so quick to discharge – observe a FULL feed before deciding that the baby is feeding effectively. Longer term consideration needs to be given to how long families can stay in hospital as quick discharge can mean mum is struggling by day 3.

  • Breastfeeding support needs to be 24/7 – one mum reported having a baby on the Wednesday and being unable to find NHS support when she hit “crisis point” at the weekend.

  • If part of your job is to support infant feeding, make it your mission to find out all of the places to which you can signpost families who are struggling. There is a lot of support and information out there but too often HCPs do not send families to it.

  • Be aware that birth professionals and other healthcare professionals often do not have sufficient training to deal with complex breastfeeding problems. As a parent, do not be afraid to question and ask for additional support. As an HCP, see above re signposting – know what is available in your area.

  • The NHS should provide information on non-NHS support options – International Board Certified Lactation Consultants (IBCLCs), breastfeeding counsellors and peer supporters, all the major voluntary organisations and doulas.

  • Full time, dedicated breastfeeding support midwives on every maternity ward, and support available after discharge. Relying on volunteer peer supporters is not a sustainable model. Unpaid peer supporters do an amazing job but to truly make a difference to infant feeding more paid staff are required.

  • Tongue tie to be checked for as part of the routine newborn checks. (Click here for more #MatExp discussion on this)

  • Be mindful of IV fluids used in labour when assessing the amount of weight a baby has lost. The initial birth weight may well have been inflated.

  • Where supplementary feeding is necessary, try to use a supplementary nursing system (SNS). They help to stimulate milk supply whilst giving the “top up” of formula or expressed milk.

  • Where a woman wants to breastfeed but has been unable to, please ensure she is given good quality, independent information on formula feeding AND emotional support around the fact that she was not able to meet her breastfeeding goals. A debrief with someone qualified in breastfeeding support would help to work through what happened and deal with some of those destructive (and unnecessary) feelings of guilt.

  • Empower, educate and support women so that they can make a genuine choice about how they want to use their body and how they want to feed their child. Once that genuine choice has been made, support that choice regardless of your personal viewpoint.

  • Do not be so quick to “blame” the dyad for breastfeeding difficulties. Look at potential underlying medical issues.

  • Normalise breastfeeding for the next generation by including it as part of the science/personal development curriculum

  • Support to feed babies at the breast needs to be moved far higher up the agenda for governments and healthcare commissioners alike

Remember this which Elizabeth Pantley shared on her Facebook page:

via http://www.pantley.com/elizabeth/ via http://www.pantley.com/elizabeth/%5B/caption%5D

We need to look after the “someones”. Understand their goals and fears, their preconceptions and their anxieties.

One of the mums on my private Facebook group gave a great summary the other day of how it’s all gone a bit wrong for infant feeding in the UK:

“Pressure from health professionals to feed but a lack of support to do so, meaning when mum comes across difficulties she just blames herself and feels she has to stop. (“I had no milk.”)

Decades of bottle feeding being promoted as “best” meaning our parents and grandparents don’t understand breastfeeding, and encourage formula feeding instead. (“Just put him on a bottle, it never did you any harm.”)

A formula feeding society making it seem that babies should be sleeping through the night and “in a routine” undermining the confidence of breastfeeding mums. (“Tom has been sleeping through from 2 weeks!”)

No counselling or debriefing for mums who felt they had to stop breastfeeding before they were ready.

The formula companies and their advertising promoting “mommy wars.”

A refusal to talk about bottle feeding openly and frankly by health professionals due to fear of causing offence.

The high price of formula making mums feel punished for bottle feeding.

We’re getting it all so, so wrong as a society and segregating parents when we should be uniting them. How you feed your baby shouldn’t even be an issue – the issue should be whether or not you are supported.”

Lucy, Dorset

Woman-asleep-with-books-002

So what would I recommend as a bit of infant feeding bedtime reading? There are so many fantastic resources, but based on the actions above and recent discussions this is my current pick of the pops:

  1. The “Second Night Concept” – why does it seem as though everything has “gone wrong” on night 2? 

  2. What is normal behaviour for a newborn baby anyway?

  3. If breastfeeding is so “natural” why is it so hard

  4. Who are all these different people who are qualified to support breastfeeding? 

  5. The hurt that is caused by the media constructed “mommy wars” 

  6. Why what I do with my breasts is none of your business 

  7. Are we really under pressure

  8. The part that the formula companies have to play 

  9. Are we being unfair to formula feeding mums?  

  10. Supporting women to breastfeed when they need medications 

 

There is also of course my own #hospitalbreastfeeding campaign which focuses on the support available for breastfeeding families on children’s wards and in children’s hospitals. There is another selection of fantastic links under the Guidance section on my website http://www.heartmummy.co.uk and for more discussion on this particular area please see https://heartmummy1980.wordpress.com/2015/05/10/when-hospitalbreastfeeding-met-wenurses-2/

Finally, if you are still suffering from insomnia, there is my own feeding story which covers formula feeding, combi feeding and natural term breastfeeding – I’ve tried to sample a bit of everything with my boys! 

I saw Mark Harris speak at the Association of Breastfeeding Mothers conference last month and he said something many will have heard him say before: “evidence is not the same as truth”. This has particular resonance for me when it comes to infant feeding. The evidence is about statistics, nationwide trends, health outcomes across generations and demographics. Truth is about what you can see with your own eyes and understand about your own family. There is no need to question or reject the evidence to protect your own truth. The evidence says quite clearly that my eldest son has a higher likelihood of poor health outcomes in later life because he was formula fed from 10 weeks old. The truth is that if I had tried to continue breastfeeding he had a 100% likelihood of being shouted at and rejected by his mother.

We all have our own truths. Finding someone with the same truth as you is so empowering but it is important to recognise that other people’s experiences are no less valid than yours. The evidence is important for parents making informed choices, and for commissioners when deciding on what priority to give infant feeding. The truth of your own circumstances and experiences is important for deciding what is best for you, and only you and your family know what that is.

The important thing is not what choices we make. The important thing is that we are supported so that we can make those choices. And at the moment far too many families are having their choice to breastfeed taken away. This has to change.

Reap benefits

Helen Calvert

@heartmummy

2015

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Time to Act on Breastfeeding and Medications

There have been some fantastic conversations taking place on the MatExp Facebook group, with lots of ACTION threads being posted to generate discussion. The aim of these discussions is to identify ways that we can ACT to improve maternity experiences. Big, long-term actions that might require system change or a change in culture. And small, immediate actions, that professionals and individuals can take today to improve the maternity experience of those around them.

I have great pleasure in sharing with you a guest blog from Infant Feeding Coordinator Luisa Lyons, a midwife and IBCLC at Norfolk and Norwich University Hospital.  Luisa led a discussion on the Facebook group about breastfeeding and medications, and this is here write up of that topic.  Take it away Luisa!

Luisa Lyons, guest blog author
Luisa Lyons, guest blog author

Can you breastfeed after having a tattoo? Can you breastfeed if you are on Prozac? Can you breastfeed if you take antihistamines?

As part of #FlamingJune, the #MatExp group discussed the topic of breastfeeding and medication. An interesting discussion took place and some actions were generated to help move forwards on this important topic to improve maternity experiences.

Breastfeeding mothers are frequently misinformed by health professionals with regard to what they can and cannot take, and at what dose whilst breastfeeding. Many mothers are told to stop breastfeeding unnecessarily, to “pump and dump” when not necessary or denied medications that could benefit them.

Contributors to the discussion described being denied medications for mental health conditions, or being prescribed medications later found to be harmful, being told to stop breastfeeding in order to be able to take anti-depressants or other medications to treat mental health issues.

The hurt and frustration women feel at discovering the advice was wrong is considerable and stays with them.

The increased risks to mothers from not taking medication which is indicated, and the risks of not breastfeeding to maternal and infant health mean that everyone involved in supporting new mothers needs to be aware of breastfeeding and medication.

Themes that were raised were assumptions that babies do not “need breastmilk” over six months and therefore stopping breastfeeding in order to take medication was then indicated. We know this is incorrect and that as long as a mother and baby dyad continue to breastfeed, the longer the beneficial health effects last, in a dose response manner. The World Health Organisation recommends breastfeeding exclusively for the first 6 months and then continuing up to 2 years of age and beyond.

Another theme was women with chronic pain conditions finding difficulty in accessing accurate information. In addition there were reported inaccuracies about dental extractions/sedation. Another breastfeeding mother got in touch to say she had suffered from hayfever for months before discovering she could have been taking the antihistamine Loratidine with no concerns.

BfN meds

NICE guideline Maternal and Child Nutrition (NICE, 2008) describes the standard of care that should be implemented with regard to prescribing for breastfeeding mothers. In standard 15 it states:

  • Ensure health professionals and pharmacists who prescribe or dispense drugs to a breastfeeding mother consult supplementary sources (for example, the Drugs and Lactation Database [LactMed] or seek guidance from the UK Drugs in Lactation Advisory Service.
  • Health professionals should discuss the benefits and risks associated with the prescribed medication and encourage the mother to continue breastfeeding, if reasonable to do so. In most cases, it should be possible to identify a suitable medication which is safe to take during breastfeeding by analysing pharmokinetic and study data. Appendix 5 of the ‘British national formulary’ should only be used as a guide as it does not contain quantitative data on which to base individual decisions.
  • Health professionals should recognise that there may be adverse health consequences for both mother and baby if the mother does not breastfeed. They should also recognise that it may not be easy for the mother to stop breastfeeding abruptly – and that it is difficult to reverse.

BfN

Dr Wendy Jones, pharmacist and breastfeeding tutor with the Breastfeeding Network and Independent Prescriber, has been instrumental in raising awareness of the issue in the UK and supporting thousands of women to breastfeed whilst on medication. She has so far written many factsheets on breastfeeding whilst taking medications. They can be found here https://www.breastfeedingnetwork.org.uk/detailed-information/drugs-in-breastmilk/drugs-factsheets/

So how can we ACT to improve experiences for mothers and babies?

LactMed

  • Empower women to question advice where they are told to stop breastfeeding in order to take a medication
  • Encourage evidence based information use to enable mothers to make informed decisions of risks and benefits where the evidence is not forthcoming on a particular drug
  • Devise e-learning packages for staff to learn more about infant feeding and include medications and breastfeeding in this training
  • Maternity units to forge closer links with public health departments to encourage joined up working
  • Make a poster for antenatal clinics asking women who are pregnant and on medications if they would like more information on their medications and future breastfeeding
  • Make the safety of Drugs in Breastmilk a less scary topic for HCP’s so that support can come upstream from the firefighting that Dr Wendy Jones and her colleagues have to do when mothers receive incorrect advice. The current system of women self-seeking information, largely online, means that less literate women are at a disadvantage
Luisa with Janette Westman who inspired her to get involved with infant feeding when they worked together in Bradford.
Luisa with Janette Westman, who inspired her to get involved with infant feeding when they worked together in Bradford.

Luisa Lyons
Infant Feeding Co-ordinator
Midwife and Lactation Consultant (IBCLC)
Maternity Services, West Block Level 3, Norfolk and Norwich University Hospital

2015.

 

 

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#FlamingJune – #Matexp igniting the flames to improve maternity experiences

Wow what a month its has been!  The whole of June has been #FlamingJune, a month when everyone was asked to share actions big or small to show ways they are going to improve maternity experiences. Everyone whether a mother, a doula, a midwife, blogger or campaigner was invited to post actions on the Matexp facebook page, the twitter hashtag #Matexp or the Matexp website.

What a response! In fact there have been so many actions it is impossible to list them all. But here is a little round up of the general ideas behind the actions.

LISTEN, this was mentioned by so many and shows how important is it that women are listened to, in pregnancy, during birth and afterwards. Many voiced that this simple action alone would have improved their experience and many voiced that listening to women more was their action.

ADVOCATE, for women, for families, by Blogs, campaigns, education classes and working with local maternity liaison service committees many spoke of ways they will seek to support families. Some will be doing so be simply voicing their own experience.

CHOICE, campaign for, raise awareness of, make sure women are aware of and given choices and that their choices are listened to, respected.  Some actions involved women simply educating themselves on the choices available to them, while others spoke about raising awareness of options and choices and how to get support.

SUPPORT, for breastfeeding, families with babies in NNU or on paediatric wards, perinatal mental health and for families that have lost their precious babies. Also how healthcare professionals can all work together to make support for families better. There were so many amazing ideas and actions on support and again many voiced how important support is.

Some said that their actions were to become midwives and health visitors and to be on the frontline of supporting women and their families, to change cultures and improve maternity services.

During #FlamingJune we have discussed, tongue ties, infant feeding, baby loss, perinatal wellbeing, birth trauma, medication while breastfeeding, NICU, low birth weight, PND and much more. These were based around the Matexp twitter Alphabet.

This month saw us celebrate fathers day and the importance of dads to families. We saw beautiful pictures on the Matexp facebook page of dads doing skin to skin, holding, playing and loving their families. It was so moving, and truly showed how valuable they are and all partners, to the wellbeing of families.

This month was also #celebratebreastfeeding week. Again we saw amazing pictures and comments of the good support that families have had, but also many posts on the lack of support that so often seems the situation many families face. With many areas finding cuts are being made to breastfeeding support it is a timely reminder of how important it is that feeding support is part of a good maternity experience.

#FlamingJune saw the release of the first, of we hope many, videos on Matexp. Florence, Gill and Sarah in a really moving video shared with us all how and why Matexp started, the whoseshoes workshops and the impact it has had on services.

Also the first Matexp workshop to be held outside of London in Guernsey which is so exciting. Hopefully workshops will start to spread all over the UK and who knows eventually, maybe the whole world.

So as we reach the end of #FlamingJune what now?  Well if you haven’t made an action you still can, it doesn’t have to be a big change it can be as simple as thinking about the language we use around a pregnant women or to share our story. If we have made an action, keep going to see it through. Every small change we make as individuals makes a difference. It maybe that your action will be hard to make happen, or will take a long time, but don’t give up because even just changing the maternity experience for one family makes it so worthwhile.

There are more plans ahead for the coming months, so much to look forward to. Thank you for the journey so far, for your actions, thoughts, comments and support. Matexp puts families at the heart, its overall theme is kindness and compassionate care. It is a safe place for everyone to voice their views. So take a look and get involved in making maternity experiences better for everyone.

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Emma Jane Sasaru

@ESasaruNHS

 

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The #MatExp month of ACTION begins today. Why women everywhere need the Maternity Review Team to engage!

June is not going to be dull…! For me personally, this is a big week – I am looking forward to speaking at the NHS Confederation Annual Conference on Wednesday. The session I am involved in, chaired by Dr. Mark Newbold, is about urgent care of older people. The emphasis of my contribution is around prevention, holistic approaches and joined-up systems, ensuring that life is not over-medicalised – the simple things that make life worth living.


Mum, known on Twitter as @Gills_Mum, is extremely interested in my talk and threatening to write a blog of her own…

Preparing my presentation brings home yet again the parallels and key themes across all areas of my work. Hardly surprisingly really as we are all people; aspirations, hopes and fears and the desire to have control over our own lives do not suddenly change just because we get older.

FlamingJuneToday starts the month with a bang.

Our #MatExp campaign, to improve the maternity experience of women everywhere, goes up a gear.

For anyone who has been twiddling their thumbs and wondering what to do with themselves since the end of the #MatExp alphabet (yes, we know who you are!), you will be delighted to know that June is a month of action!

#MatExp #FlamingJune – we are just waiting for the weather to catch up … although perhaps it is just as well it is a bit cool outside or the energy burning in this remarkable grassroots campaign might just start some forest fires!

Sheena Byrom is an extraordinary woman. As her action for June, she is posting blogs from individuals who have information to offer to the new team set up to conduct a national review of maternity services in England, led by Baroness Julia Cumberlege. We all feel passionately that this new review team needs to engage with the action-focused, inclusive work of what has now become an unstoppable social movement for positive change.

And so it is a huge honour that Sheena invited Florence Wilcock and me, as the initiators of the #MatExp campaign, to write the opening blog and tell everyone what has been happening and why is it so important for these links to be made.

Sheena is publishing our blog today on her site. But for ease you can also read it below. We are all working together in a very strong collaboration and taking the view that the more different channels we can use to spread the word and involve more and more people, the better!

OUR GUEST BLOG FOR SHEENA BYROM IS REPRODUCED BELOW…

We would like to kick off Sheena’s June blogging series with a strong call for the Maternity Review Team to engage with our fabulous #MatExp grassroots community. We need to build on all the amazing work that has been happening over recent months through this passionate, inclusive group.

So what is #MatExp and how did it come about?

A lot has been written about this already – for example, Florence’s ‘in my shoes blog’.

Florence and Gill made this short video when, due to the phenomenal grassroots energy it had inspired, #MatExp was included as a major campaign in NHS Change Day, 2015.

[youtube https://www.youtube.com/watch?v=P4upEK33_0U%5D

Users came forward not only to join the various actions but to initiate and lead them themselves. You can check out the actions here but they cover everything from appropriate language, postnatal support, best practice and experiential learning – including many male obstetricians spending time in the lithotomy position!

Florence is a passionate obstetrician and clinical leader, who was asked by the London Strategic Clinical Network to find ways to improve maternity experience in response to a poor CQC report identifying that six of the seven worst trusts in the country for maternity experience were in London. Florence approached Gill, the creator of Whose Shoes?, to co-produce some challenging Whose Shoes? maternity scenarios and run a series of workshops, getting users and professionals and all other interested parties – NCT, MSLCs, everyone! – to work together as equals and come up with imaginative solutions.

IMG_8292With support from NHS England, five very successful and fully subscribed workshops were held across London.

Queen’s Hospital session in action

[youtube https://www.youtube.com/watch?v=n1Xgv2h-CXQ%5D

The combination of the face-to-face workshops and the social media network have been extraordinary, with lots of overlaps. For example Helen Calvert and Leigh Kendall, two of the mums now helping lead the campaign, came down to London to join the workshops and they also contributed to the #MatExp NHS 6Cs webinar.

Booklet - MatExp WSThe Whose Shoes? workshops, supported by a full leadership and facilitation toolkit kit developed in partnership with the London SCN and NHS, are now planned at other London hospitals and spreading to other parts of the UK, including a session in Guernsey at the end of June.

There is a lot of cross-fertilisation of ideas between localities and between hospitals, with a strong emphasis on building relationships and collaborations. Each workshop culminates in pledges and a local action plan, formulated by the people at the workshop and encapsulated in a powerful graphic record.

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Graphic record from our #MatExp Whose Shoes? workshop, held at Kingston Hospital. New Possibilities are the graphic artists.

Inevitably the themes are similar between the different sessions but with a strong local emphasis and most importantly local ownership, energy and leadership.

On Gill’s original blog there are LOADS of scrolling photos at this point showing #MatExp #Whose Shoes workshops and the wider campaign in action – take a look!

It would be easy for the NHS Change Day campaigns to lose momentum after the big day itself, (11 March). #MatExp has done the opposite, continuing to build and bring in new people and actions. #MatExp #now has 110 million Twitter impressions. We have just finished the ‘#MatExp daily alphabet’, a brilliantly simple idea to get people posting each day key issues related to the relevant letter of the alphabet.

This has directly led into the month of action starting today, 1 June!

Helen Calvert set up and ran a survey of health care professionals. She had 150 responses within about 10 days and analysed and reported the results – an extraordinary contribution.

We have a vibrant Facebook group (please apply to join – initiated by fab Helen Calvert @heartmummy) and the brand new website (LAUNCHED TODAY! – huge thanks in particular to Leigh Kendall @leighakendall) set up by the #MatExp team of mums who are incredibly focused, working long hours – all as volunteers. We are all absolutely determined to keep working together to improve maternity experience for women everywhere.

Gill Phillips and Florence Wilcock

There will be LOADS of ideas to help you…
So please get involved.

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My HELLP Syndrome Experience (Part 1)

One night when I was 23 weeks’ pregnant, I woke up with a pain in my chest.

“Heartburn,” I thought.

It was uncomfortable, I felt constantly full. Normal heartburn medicine did nothing.

I was putting on a lot of weight. Normal for pregnancy, I thought.

I was becoming breathless. Related to the weight gain, I thought.

I was very emotional. Normal pregnancy hormones.

I Googled my symptoms. Preeclampsia was a possibility. “Don’t be ridiculous,” I thought, “I am only 23 weeks’ pregnant.”

This went on for six days. Getting progressively worse.

The heartburn became painful. I was unable to sleep. I got up in the night to drink milk. I don’t like drinking milk. I even resorted to taking paracetamol, having resisted any drugs in my pregnancy until then.

Day seven brought a routine midwife appointment. High blood pressure. Ridiculously high. Surely the machine must be broken, I have low blood pressure. Three pluses of protein in my urine. I had to go straight to hospital for further checks.

I knew the protein was a symptom of preeclampsia, but I was not worried because I was only 24 weeks pregnant. I thought it was a problem only in later pregnancy. I thought I would be bored in hospital. Lots of waiting around. I had forgotten my Kindle.

How wrong I was.

Arriving at Bedford Hospital, more urine given, blood taken.

A consultant comes to see me. I have preeclampsia and something called HELLP syndrome. Everything else is irrelevant because they say I will have to deliver my baby that night. I am seriously ill, and the only cure is to deliver the baby.

It is early, far too early.

I am distraught. So is Martin. We cannot believe it.

An injection is put in to my thigh. It hurts. But it is a steroid, to help my baby’s lungs develop. It is the first of two such injections.

I am taken to a room that doubles as an operating theatre. I have to remove all my clothes and put on a gown. I am advised to remove my rings, because sooner or later my whole body will swell and they would have to be cut off.

A catheter is inserted. I do not understand at that time the concern for my kidneys. I am sure someone must have told me, but I do not remember. It takes me several weeks to figure out the connection.

I must have a cannula so they can give me magnesium sulphate to protect my and my unborn baby’s brain from potential seizures. A doctor tries, then the consultant. Anaesthetists are called. They try, one arm each. So many attempts, but the cannulas do not flush through. I am able to count 20 puncture marks when the bruises appear later that week. Martin leaves the room because he cannot bear to see me in such pain.

Mercifully, they give up and insert a central line. I lie perfectly still, a plastic sheet over my head as they insert a line into my jugular. It is stitched into place. It is difficult to move my head.

They start the magnesium sulphate through the line in my neck. All of a sudden I am on fire. My skin is burning. I throw up.

A radiographer comes to take an x-ray of my chest, to make sure the central line is in the right place, not poking into a lung. A lead apron is placed over my belly to protect the baby. I am asked if I am happy having an x-ray because I am pregnant. “Of course I am not bloody happy about it,” I reply. But what choice do I have? A punctured lung not do me or my baby any good.

Me in Bedford Hospital. You can see the central line in my neck, and how big I was becoming (besides me being 24 weeks' pregnant).

I am told I my baby will have to be born that night. There will be no time to induce me, so a Caesarean section it is. An epidural is out of the question because my platelet levels are too low. A general anaesthetic it will have to be. My baby is too small to be cared for in that hospital so will be immediately transferred elsewhere, with me following when stable enough.

Platelets are what enable the blood to clot. An epidural could cause bleeding in my spine and leave me paralysed. I do not want to be paralysed, but nor do I want my baby to be sent away from me, with the chance that I will never meet him.

Two neonatologists come to see me. This hospital is equipped to care for babies from 34 weeks. My baby is far too early. I can see the fear and uncertainty in their eyes. They say there is a 50/50 chance whether our baby will be born alive. If alive, he is likely to suffer a short, painful life because of brain bleeds and bowel problems. They ask us if we would want them to attempt resuscitation. We do not hesitate to say we want our much-wanted baby to be given every chance. We are terrified.

This is Monday night. Martin sleeps on a reclining chair next to me. Except neither of us sleep. We both sob, mourning the baby we have not yet met.

I am given hourly checks on my reflexes. I am not allowed to eat, with the possibility of a general anaesthetic soon. I am allowed only enough water to swallow more medication. I am attached to a blood pressure machine and a sensor on my finger to monitor my heart rate.

Morning arrives. My baby is still in my belly. Relief! I am feeling much better. I am allowed to eat, but my fluid intake is still strictly monitored. My mum arrives, having set off early that morning and driven all the way from Devon.

The doctors are puzzled. My condition has stabilised, and some things have even improved. I am special. The kind of special that no one wants to be. I am still not going anywhere though. I am forbidden from getting out of bed. They are waiting for me to be stable enough to be transported to a bigger, specialist hospital. Wherever has a spare bed.

A student midwife is posted next to my bed all day. I am glad, I have someone to chat to. I do not realise at that time that she is there not for my entertainment, but in case I suddenly have a seizure, or otherwise suddenly deteriorate.

The midwives consult the procedure for the care of women with preeclampsia, it is something they see so rarely. They are kind and different ones pop in to see me to see how I am getting on.

A friend visits. While she was there, she tells me months later, the consultant arrives. He tells me I am seriously ill and that they are very worried about me. “Oh ok!” I apparently cheerfully reply. My friend is terrified. I remember her visiting, but I do not remember this conversation.

I am completely, blissfully, away with the fairies.

That night Martin returns home to sleep. There are more hourly checks. Some people turn on the wrong light switch, turning on the dazzling theatre lights. The infusion machine seems to be programmed to occlude and alarm every time I drop off to sleep. I am exhausted.

Wednesday morning arrives. I am allowed to get out of bed for the first time since Monday evening. I waddle to the shower to sort of get clean – I am told to try to not get my central line wet.

A bed has been found for me at St George’s Hospital, in south London. Liverpool was next on the list. I am happy with south London. In fact, I don’t really care. An ambulance has been called to take me there. Two midwives will accompany me. What an overreaction, I think, I feel much better than I did on Monday. Martin is unable to come in the ambulance, not enough room, so he follows by train.

We speed down the M1, blue lights and sirens blaring. Zoom through central London. The ambulance is uncomfortable, lying on a stretcher.

I arrive at St George’s. Taken to another private room. The midwives and paramedics wish me well and depart. My history is taken by more doctors. They say I will be moving to another room, one with more monitoring capacity, but first they need to move the woman currently in there out: I need it more. The severity of my illness still doesn’t dawn on me.

I am taken in a wheelchair for Doppler scan. It is a busy waiting room. People stare at me in my bottom-baring gown, central line, catheter, and generally looking a mess.

Martin and I are excited at seeing our baby on the screen. We are told our baby is growth-restricted, but I am mesmerised. The sonographer apologises, she would like to explain more but it is a rush, it is the end of the day, and she needs to get the results to the consultants. We are given an appointment for another scan in a week’s time. Hope.

I wait in the corridor for a porter to take me back to the ward. My heartburn is getting worse. I feel so sick. The pain is awful. I just want someone to take the pain away. Back on the ward, I do not know what to do myself. The pain! I stand by the bed. I start to shake uncontrollably. I am given medication, the pain goes away. I feel so much better.

That night I sleep so well. Martin is on a mattress on the floor next to me. I have my hourly checks. The baby’s heartbeat is strong. Everything feels ok. I will wait in this bed for a few weeks, let my baby get bigger and stronger before he has to be born. I will be bored out of my mind, but that will be ok.

I do not have time to be bored.

Thursday morning, a contingent of consultants arrive. They ask me how I feel. I say I feel really good: I have finally had some decent sleep, and the pain has gone. They say I am not ok – my baby will have to be born that morning. For real, this time.

I sob and sob. It is too early, far too early. We were going to have more time. I am given an examination to see if I can deliver naturally, but my cervix is locked shut. A Caesarean it is. Martin holds one hand, a kind doctor another. Both try to reassure me. I ask whether my baby will be born alive. They cannot say. They tell me how ill I am, apparently. I do not remember.

Anaesthetists arrive to explain what will happen. I listen but I do not hear, I am too distressed, and anyway I do not care. A consultant explains the risks of the section: bowel and bladder rupture, the chance of no more babies. I do not care, do whatever you like to me, make sure my baby is ok.

I am wheeled down to theatre. I feel like the worst mother ever: knowing my baby is likely to die so my life can be saved. A strange calm comes over me. I accept that I am unlikely to meet my baby. We will get a dog, and go on a holiday when I am better. Martin and I kiss and cuddle. He is not allowed in theatre with me. I tell him our baby is going to be called Hugo. I liked that name, but we had not been able to agree on a name for our unborn son.

One anaesthetist gives me a fluid to drink to stop my stomach acid rising. I am told to down it in one, like a shot. They are both so kind. But this isn’t going to be a good time. They need to put more needles and lines in me. I am given a sedative so they can do that. That is the last thing I remember.

Hugo is born at 11.20am, weighing just 420 grams. He is ventilated and whisked off to the neonatal unit. Martin is there when I wake up. He tells me Hugo is alive. I give the biggest smile. I do not remember this conversation, nor do I remember him holding my hand while I am wheeled all the way to intensive care, the other end of the hospital.

Hugo on the day he was born

I remember the nurse saying my name, trying to get me to wake up. I have more wires. One in my wrist marked ‘arterial’ to measure my blood pressure. A drain coming out of my tummy. Oxygen prongs up my nose. More magnesium sulphate being pumped in to me.

I just want to know about my baby. I want to see him, to be with him. I am told that day is impossible. I need to rest. There is still danger even after the baby is born. I lost two pints of blood during the section. I am swollen everywhere. I cannot grip anything with my hands. My mum feeds me fruit yogurt, I cannot use a spoon.

A consultant visits to see how I am getting on. Tells me “Sorry we had to do that to you, your organs were about to fail.” “Oh, that’s ok!” I brightly reply. Oh, blissful morphine had taken me even further away with the fairies .

A midwife arrives to express some of my colostrum for Hugo. Precious protection for my little boy. One thing I can do for him.

I feel totally helpless. There are so many beeps and alarms on this ward. I cannot move.

In intensive care

Martin says how amazing Hugo is, a beaming smile. I have photos of him. Precious photos. I want to see him myself. I cannot wait to be with my baby.

Friday morning arrives. I am told I can leave intensive care, and return to maternity high dependency. I will be taken to see Hugo on the way. I cannot wait.

Time ticks away on that Friday. For the previous day and night I had my own dedicated nurse, and now I share her with another patient. They take up most of her time.

I feel alone, helpless, and want to see my baby more than anything else in this world. Why do they not understand?

I ask, so many times. Nurses make calls. A problem with the bed I need. I do not care, I want to see my baby. My baby needs his mummy, I need my baby. No one takes me. No one does anything about it.

By the end of the afternoon I ask the nurse caring for the patient next to me (bizarrely, my nurse’s other patient is at the other end of the ward) if she knows when I will be taken to meet Hugo. I do not remember her exact words, but they were to the effect of “Pipe down, there are other patients much sicker than you on this ward.”

I am so upset. I am in a hospital a long way from home. I do not even know what this hospital looks like. My body has not been my own this week. I need care, compassion, understanding.

Eventually, at around 8.30pm they decide they will take me in a wheelchair to meet Hugo. At last! It is a delicate operation, I am swollen like a Michelin man, I have wires going into me and going out of me. I am not able to move alone, and have not mobilised since the C section. The curtains around my bed are drawn to preserve my modesty.

Some of my beautiful bruises.

Suddenly Martin’s head appears in a gap between the curtains. I am not to worry, he says, but I need to come quickly. I can read the look on his face: there is much to worry about. I make him tell me: Hugo’s blood pressure is declining, and nothing they are doing is working. They are worried they are losing him.

I shriek. Shout at the nurses with their faffing. They are trying to be gentle with me, I know, but I am unspeakably furious at them for the time they have taken to take me to see Hugo. I am terrified he will die before I get there.

The nurse wheels me along the corridor. People get out of the effing way! Don’t they know my baby is dying? The wheelchairs are as bad as supermarket trolleys, she wheels me into obstacles. The pain shoots up in to my stomach wound. Martin takes over.

Cheeky Hugo, kicking away and grabbing his wires.

We get to the neonatal unit. Hugo’s nurse and consultant introduce themselves. They had been frantic, but the little monster’s blood pressure corrected itself the moment I arrived.

Little Hugo Boss knew exactly how to get what he wanted. His mummy.

I shrieked again when I saw him. So small, so red.

The consultant told me to open the porthole, touch him, get my mummy germs on him. I didn’t want to, I thought I would break him, but I did, I reached in with my hand and my son gripped my finger. It was the most amazing moment ever.

So began the most beautiful and the most terrible 33 and a bit days of my life. Hugo lived for 35 days, but I missed a day and a half of it.

A cuddle with Mummy

That was Friday February 21 2014. Ten months ago to the day. There are many parts of the story I do not remember, but the terror of that wheelchair journey and the ecstasy of finally meeting my son are two moments that are etched in my memory forever.

I made a formal complaint: the written reply felt flippant to me, that they did not fully understand the gravity of the situation, the potential implication of their inaction. I met with representatives of the ward a couple of months later and read them the riot act. They will never forget me, nor Hugo. No other mother should experience that. Having HELLP syndrome and everything else that went with it was bad enough. That was unavoidable. My life was saved, Hugo given the best chance. I am grateful for every moment I had with Hugo.

Hugo, Martin and me

But what happened on that ward that day was entirely avoidable.

I have felt a compulsion to write this today. I don’t know why: perhaps I just need to get it out of my head, in a raw, visceral way.

I know I am lucky to be here. The ‘heartburn’ and pain under my ribs was my liver in serious trouble. My kidneys weren’t doing well either. My blood pressure was far too high and my platelet level far too low.

Here I sit, 10 months later. Physically sound, thanks to the actions of the wonderful maternity, obstetric, anaesthetic and pathology teams of two hospitals.

Emotionally, I am still trying to process it. Pregnancy is supposed to be a natural event. I know bad things can happen during pregnancy: babies lost, babies tragically born sleeping. But the placenta turning your body against you? The placenta sending toxins around your body, shutting down your organs. I know now it is not my fault, but it does not prevent me feeling guilty.

HELLP. What a crappy acronym.

There is nothing helpful about it.

It is a difficult thing to get your head around.

Proud Mummy alert: what a beautiful boy!

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Don’t call me high risk! #MyPositivePregnancy

This post was written during my 4th pregnancy, my journey towards a VBA3C. Throughout this pregnancy I was fit and healthy yet classed as high risk due to having had three previous c-sections. 

Don’t call me high risk.

Don’t take heed of the warnings that spew out into the papers at an alarming rate. A VBAC is not a disease, or a dirty word. A woman who has had a c section is not ‘risky business’. I am a woman who wants to give birth to her baby. To feel her baby. To be awake to see her baby take the first breath, open their eyes onto this world and feel their skin against mine. I am a woman who wants to be one of the first people to hold her baby. I am a woman who wants to sit up and hold her baby. To feed her baby with arms that feel the life within. I am a woman who wants to tell the world her baby’s name; not discover it for herself when she wakes.

Don’t call me high risk. Don’t greet my intentions with raised eyebrows and furrowed smiles. Don’t assume that my intentions will not be ‘allowed’. Don’t deny me the chance to be normal for once.

Don'r call me high risk_ my positive pregnancy~ Ghostwritermummy.co.uk

This weekend I came across this article by Milli Hill (@millihill) and I found myself nodding along to almost every word.

When my body screamed out to me that my son was on his way, the ‘High Risk’ label echoed the cry and we called the hospital straight away, as we’d been told. We went straight in, as we were told. We never questioned a thing and we never assumed that we were anything but high risk. The fact that I was labelled as High Risk left me in no doubt- what I was doing was scary. I wanted no part of it. But in actual fact, lots of women have a VBAC, and the fact that we didn’t should not be held against me.

This time, I am a woman striving for a VBA3C. And supposedly higher risk than ever before. And yet I feel more positive this time than I ever have. Whether it is age, experience, or having come to a point of peace with what has gone before, I do not know. But I do not feel scared. I do not feel High Risk. I feel like a woman who passes a mirror and catches sight of her swollen body and smiles, stops to capture the moment; when once I would have collapsed inside.

I feel like a woman with a life growing inside. I feel special. I feel on the edge of something wonderful. I feel strong. Strong enough to question decisions that are made for me. Strong enough to face the fear that I know will come as the weeks pass by. Strong enough to cast aside my label and just be a woman giving birth. For once.

That is my positive pregnancy. It’s taken four attempts to get here and I’m going to hold on to it.

To find out more about #MyPositivePregnancy, #TeamMama and Mama Academy,please click here. You can also read about the Made to Measure campaign here  and if you have a moment, please sign the petition urging all UK trusts to help save 1000 babies by adopting The Perinatal Institute’s GAP programme.

 

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