Maternity Experience

Language

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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#MatExp in Numbers and Pictures!

Our ‘small pilot’ MatExp has been going really well…!

Here are some quick facts, figures, and graphics:

  • Since the website was launched in June, we have had more than 7,000 hits!
  • There are more than 700 members of the #MatExp Facebook group, generating very constructive discussion
  • We had 24 action selfies for #FlamingJune
  • 16 posts added to our action linky during #FlamingJune

We tried to capture everything from #FlamingJune in a picture – there’s so much but we gave it a go!

  • #MatExp has seen more interaction on social media than ones about similar issues (not that it’s a competition, but what is so brilliant about #MatExp is that there is no limit to the number or type of people who can get involved because it’s by everyone, for everyone).

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This next stat is VERY exciting:

  • Since #MatExp started being used as a hashtag there have been – drumroll please…

numbers

Yes you read that right – more than 152 million!

(Impressions means that Tweets bearing the #MatExp hashtag would have been seen on that number of timelines)

Guys and St Thomas’ Hospital held a Whose Shoes workshop, and seems to have inspired everyone who went, with 100% of attendees saying it would impact on their practise!

Members of the #MatExp community have been busy putting into action improvements relevant to their own hospitals:

Being the language champion, I’ve been heartened to see so much chat about the issue with people from all sorts of professions and specialties taking on board the importance, value and impact of language.

I love this:

Other language – such as ‘allow’ and ‘fail’ can have a devastating, enduring effect on a woman.

Culture can take a while to transform, of course, but the fact that we are able to have such conversations, and so openly too is a very positive start indeed.

I was delighted to find this paragraph below on a site called lulubaby, which offers a range of courses to ‘prepare you for life with your baby’.

Words of common sense – “…you cannot sadly guarantee yourself a ‘natural birth’, even with the greatest willpower and determination…” fill my heart with joy. No mention of ‘low risk’ or ‘high risk’ either – let’s hope such common sense becomes much more common!

lulu

Never forget….

I am incredibly proud to have been named in the HSJ’s list of Patient Leaders, along with Ken Howard who designed our brilliant logo, and Alison Cameron, revolutionary extraordinaire.

Next week, I’m attending the listening event, the first of the National Maternity Review team’s activities. I’m going to be there as part of #HugosLegacy as well as #MatExp – I’ll be sharing my own experiences as well as thinking about how #MatExp can connect with the National Maternity Review team to make things happen. Flo and Gill are coming too – we spend so much time connecting on social media, it’s great to be able to catch up face-to-face sometimes too.

So! We’ve been rather busy. Which is why we have been seeking ways to create more hours in the day, such as getting a job lot of time-turners, like Harry Potter’s Hermione.

And we’re going to need them, because after the summer we have LOADS of exciting things going on, such as NHS Expo, and a #MatExp conference – watch this space! I’m looking forward to meeting even more of the #MatExp community, many of whom have become friends at these events.

All of the #MatExp community are busy doing something positive every day, of course. A huge THANK YOU to you all. IMG_20150526_190834These are for you for taking the time to get involved, share your stories and to make a difference to women, babies and their families. Forget-me-nots are very special flowers!

There is so much going on – Helen, Emma, and Susanne are also capturing as much as they can in their fab posts; it’s impossible to capture everything, but please know that every action and activity, whether big or small is greatly appreciated.

A couple of final thoughts…

You don’t need to ask for permission (besides the obvious!) – JFDI!CJAnPM5WUAEeFjI and always remember…

CJ5AgxgWIAACyso

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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.

300- 2 Graphic record from our #MatExp Whose Shoes? workshop, held at Kingston Hospital. New Possibilities are the graphic artists.[/caption]

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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The Importance of Balanced Messages When Talking About Birth

This post was prompted by a Twitter discussion about helpful and unhelpful vocabulary in healthcare communication.

The discussion stemmed from a Guardian article bearing the headline “Should pregnant women be encouraged to shun labour wards?”.

The words used in the headline falls into the ‘unhelpful’ category. The article actually includes the experiences of three people: one an advocate for home birth; a mum who chose to give birth in a hospital; and a dad whose wife chose a home birth for their fourth child – there were complications and he advocates choice. In short, the article really says “different women choose different places to give birth for different reasons”.

Articles such as this are all as a result of new NICE guidelines that suggest 45% of births are more suitable for midwife-led care or home birth. Difficulties with healthcare communication and such headlines can arise when words such as ‘are’ and ‘is’ are used. Yes, the guidelines are based on evidence, but when you say ‘are’ and ‘is’, people tend to interpret that as a blanket fact. ‘Could be’ is better than ‘are’ because each woman is an individual, with her own individual needs.

Some commentators are concerned the guidelines could remove choice, rather than giving more, worrying that ‘encouraging’ women to give birth at home is a euphemism for ‘forcing’ them to do so.

This example demonstrates that whenever a new guideline on any health matter is released, it will be met with a healthy dose of cognitive dissonance – people interpreting the news based on their own experiences, expectations, hopes and fears.

Cognitive dissonance happens even if you have evidence for your new guidance coming out of your ears. As an NHS communications manager, countless hours of my life have been spent translating NHS guidance on a range of matters – cancer screening, vaccinations and healthy lifestyles to name just a few – into something that the public can understand, relate to – and hopefully act on.

When writing a press release on a health matter, or a patient information leaflet great caution has to be taken to not over-generalise, raise unrealistic expectations, or be misinterpreted by the media (although with the best will in the world the latter is not always possible).

I understand that years of scare stories about all forms of birth have led to a crippling fear of birth. Balance is what is needed. When talking about home birth or midwife-led care being a safe or a safer (than hospital) option for a certain group of women, we should be careful to emphasise those options are not safe or safer than a hospital birth for every woman. A lack of that emphasis could have the unintended consequence of making women who have to give birth in hospital, or need to have interventions for whatever reason feel less of a woman, or to have failed, or to feel guilty.

Surely none of us want that.

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I know a couple of women who have given birth by Caesarean section, both emergency and elective. They said they have had comments from women who have delivered their babies naturally such as women who have had C-sections ‘haven’t really given birth’. What a horrible thing to say! I had an emergency C-section myself, and while I have little doubt pushing a baby out of your vagina hurts (a lot, probably), having your stomach muscles cut open is far from an easy option.

Yes, we need to stop fear of birth. Yes, we need to promote birth as a normal life event. But we should be careful to not encourage or perpetuate bitchiness and competition between women as another unintended consequence of these messages.

This is the kind of statement about birth that I would love to read:

“Individual women have individual needs when giving birth. Many women are able to give birth at home, but because of issues with the current system not all who want to choose a home birth get it. Hospital can be a stressful place to give birth, which can lead to some women having interventions that are unnecessary. That’s why we’d like to give more women, in joint discussion with them, the option to give birth at home if they are considered to be low-risk. However, the needs of mums and babies are paramount, and as birth is not always straightforward there may be mums who need to give birth in hospital, with or without intervention.

“Our ultimate aim is for every woman’s experience of birth to be positive. We will do that by empowering women to be able to voice their opinions, have as many options as possible, and strive to remove fear and guilt by saying there is no right way or place to give birth.”

I know my fantasy statement above is what the guidelines are trying to achieve – this statement from NICE sort of says the same thing.

The trouble is, some people will be literal and translate the key point into ‘they’re saying home birth is safer, that means hospital birth must be dangerous’. This isn’t helped by headlines such as this one from The Mirror: “Mums-to-be warned: ‘Have your baby at home, it’s safer’”.

Many people are too busy to delve in to the facts behind the story (or just can’t be bothered to look). That results in a perception that the guidelines are saying something like:

“Home is the safest place to have your baby! Good luck to you if you have to give birth in hospital. They’re scary places, staffed by evil obstetricians whose greatest pleasure comes from inflicting pain by doing things to you that you don’t need.”

Ergo, more fear is created by stigmatising hospital birth. We don’t want such a vicious circle. So, balance. When talking about birth, think about helpful and unhelpful words, how they might be interpreted and their consequences.

We also need a greater emphasis on patient feedback, so services know what to focus on. Happily, more hospitals throughout the NHS are doing this.

As well as listening to negative experiences so services can improved, we need also need to promote the positive experiences – fear not, there are plenty of them, wherever the mum gives birth, and however the baby comes out.

 

Note: I called the statement a ‘fantasy’ for sake of the avoidance of doubt that it’s not an official statement.

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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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Birth trauma and PTSD – Raising awareness

darkest-passages-the-heart-is-unconquerable-dale-pelzer

When people think about post traumatic stress they often think of a soldier, returning from battle traumatised and battered by the ravages of war and the terrible things seen and experienced.

However PTSD doesn’t only affect those affected in the aftermath of war or a terrible natural disaster or violent act. PTSD can also affect someone in circumstances that should be safe, that should be happy, that should be the start of an amazing journey. For some women the birth of their baby can be traumatic and can be a trigger for PTSD that can severely affect their life. It can affect bonding with their baby, relationships with family and friends, doing everyday activities and physical health. So what is birth trauma and PTSD and how can we help and support women that are suffering?

Firstly what is birth trauma?

Birth trauma is in the eye of the beholder’ (Cheryl Beck) and this is true. What is traumatic to one woman may not be traumatic to another woman. Each woman’s experience of birth is unique to her and many things can add to a woman feeling her birth was traumatic. For some it maybe that her birth was a truly scary event, she may had been in an emergency situation where her life and that of her baby was at risk. Maybe her labour was very lengthy and very painful. It may be that a woman’s birth had high levels of medical intervention, such as induction, caesarean section, episiotomy, or other medical issues. It may be that a woman gives birth early and her pre-term baby requires care in NICU. Sadly some women have a birth that results in damage or injury to her baby and some lose their babies at birth.

For other women trauma can result from the way she is looked after by the staff responsible for her care both during the birth of her baby but also postnatally. She may feel a loss of control, dignity and privacy. There may have been a lack of information or a woman may feel she wasn’t listened to and her choices not respected or overlooked. She may feel she had medical procedures done without her consent or without proper explanation or that she was left with no choice. Or maybe unkind, cruel words and actions made her feel vulnerable and exposed.

Some women find birth triggers or adds to previous trauma such as rape or domestic abuse.

Often women who feel traumatised from their birth will feel isolated, other women may not understand why she feels traumatised, after all isn’t childbirth a ‘natural thing’? So a woman can feel guilty and somehow ‘weaker’ than other women for being unable to ‘cope’ with birth . She may feel she should be over the ‘birth’ and often well meaning friends and family will say things such as “at least you are ok and you have a healthy baby”. This only confounds the woman’s feelings and makes her feel more isolated and can damage relationships with partners, family members and friends as a woman feels no one understands and so she withdraws deeper into the trauma. Depending on the nature of the trauma a woman may feel unable to have further medical tests such as smear tests. Sex may also be affected as a woman may fear further pregnancies, or even just the act of physical intimacy itself. Many women who suffer birth trauma may struggle to bond with their baby, others become overly anxious of their babies health and wellbeing and constantly worry about every aspect of caring for their newborn.

For a woman that has lost a baby during birth or whose baby has been injured during birth she may experience overwhelming guilt, she may feel like it is her fault that she somehow failed her baby or that she should somehow have prevented it. She may play over and over again the birth in her head seeking answers or ways she could have changed the outcome.

Feeling like they have no voice, are misunderstood and weak many women will seek to hide their true suffering and ‘carry on’, the weight of trauma bearing down on them crushing hope, light and happiness as they try desperately to cling to normality. Everyday tasks become hard and just coping day to day can feel overwhelming. Their physical health too may suffer, as the effects of trauma ravage them mentally. Lack of sleep, trouble eating and the constant struggle all takes its toll. Flashbacks may take them back to the event reliving moments, even smells and conversations causing great distress and anxiety.

So what is PTSD and how does it differ from postnatal depression?

Often women can be wrongly diagnosed with PND when in reality they have PTSD.  While PTSD and PND can overlap as they do have some similar symptoms, they are very different. Its important that a woman receives a correct diagnose so she can have the support, help and therapies she needs. PTSD is the clinical term for a set of normal reactions to a traumatic, scary or bad experience or event. It can occur after a person experiences or witnesses something that was or they perceive to have been life-threatening.

Signs of PTSD include:

  • Feelings of intense fear, helplessness and/or terror.
  • The re-experiencing of the event by recurrent intrusive memories, flashbacks and/or nightmares. The individual will usually feel distressed, anxious or panicky when exposed to anything which remind them of the event.
  • Avoidance of anything that reminds them of the trauma. This can include talking about it, the place where the trauma happened or people that may have been involved in the trauma. (such as hospitals, doctors, healthcare professionals) Even T.V programs or books maybe avoided.
  • Bad memories and flash backs often result in difficulties with sleeping and concentrating, thus affecting daily activities. Sufferers may also feel angry, irritable and be hyper-vigilant or jumpy, easily startled.
  • Suffers may suffer panic attacks, depression and anxiety. They may feel detached, alone and have a sense of something bad may happen to them or their loved ones.

It is important to remember that PTSD is beyond the sufferer’s control. It is the mind’s way of trying to make sense of an extremely scary traumatic experience and are not a sign of an individuals ‘weakness’ or inability to cope. The person cannot just ‘get over it’ or ‘pull themselves together’ or ‘move on’. Rather they need help and support to process not only what has happened to them but also the feelings surrounding it.

So what can help a woman who has suffered birth trauma or PTSD?

For partners, family and friends its important to acknowledge what has happened to the women and her feelings surrounding it. Encourage her to talk about her feelings if she is able to. Help her to see you want to try to understand how she is feeling and that you recognise how traumatised she may feel.  Reassure her that you are there for her and that you will help in anyway you can. You maybe the only person that she trusts. Encourage, commend show compassion and empathy. Emotional support is invaluable, even if it’s just a listening ear or a hug. Realise that there may be things or activities that she may not yet feel ready to do, be patient and show understanding.

Encourage her to get help, whether it be her GP, health visitor, midwife or a charity such as the Birth Trauma association or Mind. This will not be easy as she may have a fear and distrust of telling anyone how she really feels especially a healthcare professional. Reassure her of your support, maybe offering to attend any appointments with her if she wishes. Asking for help will be hard, and so will the time undergoing any therapies being there for her providing emotional support is so important.

Also, helping with daily activities can mean so much, helping her get much needed rest offering to prepare a meal, or to do some shopping can also be invaluable.

Helping someone with PTSD can be difficult and frustrating.Partners and family can feel lost and confused too. Reading up on PTSD can help you understand it and how it can affect someone that is suffering.

Of course some partners too can feel traumatised and suffer from PTSD after seeing the birth of their baby. It is important they too seek help and support.

What about healthcare professionals?

Its important that any healthcare professional’s when supporting a woman after birth build a relationship built on trust. LISTEN, this is the single most important thing to a woman who is suffering. Listening enables you to truly know what she has been through, how she is feeling and whats important to her and her family.  Listening will enable you to know if she is likely to be suffering PTSD or any other perinatal mental health disorder. Listen also to her partner and family, they know her best, if they feel something isn’t right or reach out for your support then be there.  Ask for training in order to help you understand the different types of perinatal mental health issues and know the pathways and any local support available to signpost a women to.  Be careful of language used and do not minimise her feelings or experience.  If you know a woman has had a traumatic birth from postnatal notes etc, ASK, don’t ignore it.

What can a woman who has had birth trauma/PTSD do for herself?

  • Speak to someone, partner, family, friends, midwife, health visitor, GP. Don’t suffer in silence.
  • Remember you are not alone, there are others too that have been affected by birth trauma.
  • Remember you are not to blame.
  • Look after yourself, make sure you rest and eat a good balanced diet. Do things, activities that help you to relax.
  • Know your limitations and what you can do both physically and emotionally.
  • Speak to your hospital about your experience. Some women ask to see their medical notes and discuss exactly what happened to them and why.
  • Seek help and treatment. There are various treatments for PTSD such as counsellingEye Movement Desensitization and Reprocessing (EMDR), cognitive behavioural therapy (CBT) and medication.
  • Find local support groups or support groups on social media (such as birth trauma facebook support page)

Birth trauma is real and so is PTSD, its important that women get the help and support they need to overcome it. The birth of her baby can affect a woman for the rest of her life, it may not be possible to completely prevent birth trauma but what we can do is support women when things do go wrong and make sure that we show them love, compassion, kindness and help even at the darkest times so they believe that it will be possible to bathe in light again.hafiz-quote1

my story of birth trauma

Emma Jane Sasaru

@ESasaruNHS

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The many faces of birth

Natural-Childbirth-tips-for-Pregnant-Women

Ive seen lately many discussions on birth and it got me thinking. Birth has many faces and no one situation prevails, it is as individual to each woman, baby and family as a fingerprint. Often things such a ‘risk’, ‘normal’ and ‘natural’ are mentioned along with ‘informed choice’ and ‘statistics’. All this can be banded about and yet is birth really that simple?

Of course the answer is no, birth can be very straight forward but it can also be very complicated and so providing care, support while respecting individual choice can be difficult. What do I mean?

Well I can see there are many faces to birth. Firstly the ‘positive natural’ side of birth that we hear so much about. As I trained as a doula I learnt so much about the human body its ability to birth and ways that a woman can help herself during the stages of labouring. I truly believe that giving birth can be a wonderful, momentous, truly beautiful event during which a woman can, by listening to her body, birth her baby safely anywhere she wishes. In fact women have been doing exactly that for thousands of years. There are many things women find helpful while in the stages of labour such as hypnotherapy, relaxation techniques, massage as well as the right environment and support. Providing information for women and helping them believe in themselves and their bodies is very important. This is often not always the case in antenatal classes where much emphasis can be on pain relief and types of interventions rather than working with your body, by keeping active etc.

However, working with women who have experienced birth trauma I also see that we must be cautious. Why?

When birth goes well and is the experience a woman hoped for it is amazing. Many times however I have heard women say that when things have not gone to plan or birth has taken a different journey to the one they had envisioned they have felt like a failure. When her baby comes early, or a labour becomes complicated, when hypnobirthing hasn’t worked or when a women hasn’t been able to give birth vaginally and birth ends in a caesarean she may feel her body has failed her. I have personally heard many women voice that they feel let down, that the reality of birth wasn’t explained to them and that they felt unprepared and almost lulled into a false sense of security believing that their birth would go to plan if they just believed it and nature would do the rest. This however doesn’t always happen, birth sometimes takes a different turn, or a woman may not manage labour like she thought she would. Sometimes there is medical complications or emergencies. When a woman doesn’t have the birth she wanted then comments like ‘whats wrong with me’ or ‘why did I fail’, ‘what what did I do wrong’ or ‘I regret my birth’ often are said. This can then result in the pursuit of the ultimate ideal birth. Or for some women it can result in a feeling of despair and sometimes trauma.

So how do we empower women but also at the same time not give a unrealistic view of birth?

The key here is knowledge that is evidence based but also realistic and takes into account each woman, her wishes, her choices but also her history, previous births and health.

We also must never put one form of birth on a pedestal as the ultimate to be achieved and as a sort of goal or prize to be attained. Why are women that have laboured for hours, attempting to birth vaginally but going on to have caesareans feeling like failures? In fact why is any woman who has had a baby feeling like failure? When did it happen that one way of birth equals success and another failure? I read recently a women asking for support after going on a facebook page where women were discussing the length of their labours and competing with each other on how long they laboured before they accepted any pain relief. The woman in question had suffered a long labour, then a episiotomy, then forceps, then a caesarean because her baby was firmly wedged and in distress. Why was she seeking support? Because she felt a failure for having accepted pain relief during her labour.

I feel like a failure

Women are then often let down after birth, when birth hasn’t gone as planned women are told “you have a healthy baby, thats all that matters” but this is not true. Birth has a profound effect upon a woman and her family, there must be support after. Emotionally it can take time to process birth and with a new baby to care for it can be overwhelming. Expectations abound as does advice. Time spent with a women reflecting on her birth can be invaluable, sometimes there can be so much emphasis on the birth itself that little time is given to thinking about after. Especially where birth has been traumatic is it important that it is acknowledged and support be offered. Reflecting on good experiences is also important as it enables learning what helps and supports a woman and helps improve care given. Its important that women know it is ok to be disappointed with their birth experience but it doesn’t mean that their birth was any less an amazing event.

This brings me on to another side of birth, the medical side and in particular healthcare professionals.

To be fair those that care for women often come in for a lot of criticism. Sometimes this is justified, I myself had very poor care after the birth of my daughter, however many are trying hard under very difficult circumstances to provide care in birth that is kind, compassionate and patient centred. Empowering women can be hard in a hospital environment. Rooms are often bright, clinical areas with lots of equipment with many staff coming and going. Language often used such as ‘failure to progress’ or ‘allowed’ does little to build confidence. Midwife led units while providing the lovely environment for birth and being available for things like water births often have such strict guidelines that few women qualify to use them. Even if women do qualify at the slightest issue they are often transferred to hospital causing anxiety and concern. At a recent support group nearly all the moms there said they had started labouring in a MLU but was transferred over to hospital. They all stated they would not try to use a MLU again as they felt there was no point as they would likely just be transferred over.

What is the reason for this almost ‘over concern’?

Im not a midwife or an obstetrician but I would imagine that being responsible for the safe birth of a baby is a heavy responsibility. No one wants anything to go wrong or a women or her baby to suffer any problems. However birth can be risky and unpredictable and so in the hast to make it as safe as possible it has in many ways become over medicalised. Rather than risk injury or death of a women or her baby doctors or midwives may err on the side of caution preferring to monitor and whisk baby out at any sign of a problem. Having procedures and policies in place makes staff feel safe and processing medical training they may see things from a very different angle to the family they are caring for. Add into this the risk of litigation when things do go wrong and it can be a mix that doesn’t allow for much movement. A woman may make a choice on her birth but if things go wrong doctors and staff may still face questioning and litigation. It may also be hard to accept that a woman is indeed making an informed choice if it seems to go against the very medical guidelines that have been set in place to keep her safe. Because of this much of the ‘natural’ way of birthing has been lost in a sea of trying to make everything ‘safe’ by checks more checks and even more checks. Of course for some this has meant the saving of their life or that of their baby, however for others it has meant they haven’t had the birth experience they wanted.

No one wants anything to go wrong

If a women came to you as a doctor requesting a vaginal birth after multiple complicated pregnancies that had resulted in caesareans likely the answer you would jump to would be to advise against it. Everything you know, have experienced, and trained for, as well as all the polices and guidance around you would be screaming in your head that this was not the best idea for this woman. But what if that was that woman’s desire and choice? What if she felt informed and educated. What if she felt she was aware of the risks?

Which leads onto another face of birth.

How far do we feel women should be able to ‘choose’ how they give birth? When everything is clearly pointing to great risk to her and her baby, or if pursuing that choice could have the potential to cause issues how do we then support a woman in her choice, showing respect and dignity but at the same time mitigate risk? Do we allow a woman to birth as she wishes knowing that it may not be safe for her and her baby?

There may be no clear answer to this and this is where the waters become muddy. It is true that a woman has the choice and control of her own body and baby. But also those caring for her have a responsibility too. Informed choice must truly be that, an informed choice. As women the onus is upon us to make sure that we truly are educating ourselves on birth before making a choice. That includes not only the way to help our bodies birth our babies but also to make sure we are prepared for the situations when that may not be possible. As women we should not try to live up to any ‘ideals’ of what a birth should or shouldn’t be. It is your birth, it is your body, it is your family, does it really matter what anyone else has or hasn’t done? Of course not every woman does this or wishes to do this and is happy to follow the recommendations of her doctor for her care, trusting that they know what is best for her and her baby. Again that must be respected and should not be looked down upon or a woman made to feel guilty because she has chosen to do so. We must also remember that we are then responsible for our choices and so its important that we truly are making a choice that is informed and evidence based.

Likewise those that care for women must be mindful of the woman. Communication is the key. Finding out what her choices are, why she has chosen certain things. Look at a woman as a whole person with her own thoughts, ideas, needs, wants and desires. This is very challenging and may seem impossible. But only by doing so can correct information and support be given that relates to that women and her circumstances. Language is very important as is respecting choice. It can be easy to say ‘but that’s what we have always advised, suggested’, but challenge your knowledge and seek to always learn more and improve care given. Fear of litigation is very real however that fear can lead to being over cautious, leaving no room for choice or movement or consideration of  individual requests. Also important is consent. No matter what the situation it is very important that a woman gives consent. Ive lost count of the amount of women who have voiced that they had procedures done to them during birth that they did not consent to but felt they had no choice. Communicating why, and making sure that a woman fully understands and consents to anything done to her cannot be overly stated.

Birth may have many faces, the woman, her family, those that care for her and other women and their experiences, but what matters is the woman herself. Teamwork, communication, consent and dignity all play a part. Women and staff who care for a women need a good relationship built on trust.

Failure has no place in birth, because no woman fails but only does her best in the circumstances she finds herself in. Birth is not a competition or a race, it isn’t the same journey for any two women in fact for any two babies. Birth is individual, wonderful and breathtaking, sometimes it can be difficult and heartbreaking but, if women are at the centre, if a women are the motive, the passion, the love, then everyone will always strive to make every woman’s birth the best it can be for HER, no matter what that may be, because for every women that will be something different.

As women yes believe in yourself and your body and your ability to birth your baby, but also be prepared that sometimes things don’t go to plan. That doesn’t mean your choices are gone, or that you have failed or that your experience is somehow less than anyone else’s. It just means your birth journey changed but with help, support and care it can still be a beautiful journey.

find-joy-in-the-journey-quote-1

Emma Jane Sasaru

@ESasaruNHS

 

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#MatExp – The Good, The Bad and The Unacceptable

When I first came across Florence and Gill and the MatExp Campaign, I knew my group would have a lot of maternity experiences to provide to them.  We are always discussing and sharing birth stories, and when I asked them for their feedback it came in abundance.  Their stories, from all round the UK, have been passed on to Florence and Gill, and also to Jeanne, midwifery lecturer at Salford University.  I have permission to share an initial snapshot with you here, to give you a flavour of the ordinary maternity experiences that are happening around the country and which, for the most part, do not get formally discussed once they are over.

The Good

This was the hardest section to find quotes for.  Not, thankfully, because I didn’t have any good birth experiences to work with, but because I was looking for quotations praising the midwives.  But when you read a positive birth story the midwives are rarely mentioned.  They are there, and their actions are noted, but they do not receive praise for their interventions, because a positive birth story is about the mother: her experience, her actions and her achievement.  Rest assured there are plenty of positive stories being shared amongst us, but in terms of positive feedback there is only a little:

“Although I ended up with a c-section after induction, pre eclampsia and gestational diabetes plus a lengthy hospital stay, I only have good things to say about my experience.  At all points I felt they were doing the best for me and my baby.  I loved the fact that, during my stay in hospital, when midwives asked you how you were feeding they always responded ‘bottle feeding, brilliant’ or ‘breastfeeding, brilliant’ – there was no obvious preference amongst the staff but they were very supportive of either.”

“When I got the epidural I had a lovely midwife waiting with me for the drip to work.  I really appreciated her calm, kind attitude – she was so so lovely and I think the fact that it was one to one care made it amazing.  I felt so well cared for.  When I started to push everyone was SO LOVELY and I felt very in control.  It was when they said I needed forceps I started to lose it a bit but they were still lovely even though I was throwing the F-word around a bit by now.  I was transferred to theatre and started to get a bit scared, but again my midwife was very reassuring.  I had a spinal block which sadly went too high and I started to suffocate. I had to have a GA and I was very frightened but seriously, all praise to the staff, they were so calm and kind.  The consultant offered me a debrief appointment and I went to it about twelve weeks later – it helped me process everything.  Whilst it wasn’t a great experience I feel the hospital did everything they could to help me and safeguard my emotional health following a scary time.”

“I had excellent care in my second pregnancy with the same midwife all the way through; wonderful home water birth and excellent postnatal care, including breastfeeding support.  A great example of how important it is having the same person looking after you and building a relationship.”

What we really want in pregnancy!
What we really want in pregnancy!

The Bad

“While being assessed I gave permission to be examined vaginally on arrival to assess my progress.  On finishing the exam the midwife said ‘you’re a good 4-5cm dilated already so I gave you a good stretch whilst I was there to speed it up.’  I had not been asked if I would like a cervical stretch.  I did not give my permission for a cervical stretch.”

“Both myself and a friend progressed very quickly once the induction took and struggled to cope with intense pains that came every minute or less.  Both of us had dismissive midwives who offered no explanation as to why the pain was so intense and why we could have no painkillers other than paracetamol.  We were both told to go to sleep (as if!) and told that if we couldn’t cope now how would we cope when labour was established – which was terrifying!                                                    Both of us coped just fine on gas and air.”

“Breastfeeding support was rubbish.  My husband showed me how to manually express milk after reading the breastfeeding book.  The support workers just shoved my boob in baby’s mouth but I didn’t understand how I was supposed to do it when they weren’t there.”

“…..another midwife was lovely and kind and murmured comforting words as she fixed the belts and monitoring equipment, then left me behind the screen.  Bossy midwife then came along and yanked back the screen, announcing that she ‘liked to see her ladies when there are being monitored.’ So I was sat with my jeans so low that my pubic hair was showing, my whole bump exposed, while a couple of women I didn’t know and their partners tried to look anywhere but at me.  I had very little shame by that point but this upset me.  It felt like punishment.”

Always use your
Always use your “B.R.A.I.N.”

 

“With my 4th baby I was still keen to have a homebirth but requested a growth scan near my due date to monitor baby’s size and check it would be safe [due to previous shoulder dystocia]. This was refused. They ‘didn’t do growth scans’. I could have a homebirth but not a scan. I repeated the request to other midwives but nobody suggested referring me or even seemed to care. I eventually found a midwife who took me seriously and referred me to the consultant. When I eventually got my hospital appointment I saw a registrar who honestly didn’t seem to know what he was doing. He said I couldn’t have a growth scan but refused homebirth in case I had shoulder dystocia again.  After another appointment I insisted I saw the actual consultant. The consultant said I couldn’t have a scan but agreed to do a sweep 1 week before my due date. In the end, I asked about a due date induction to reduce the risk of the baby getting too big as I was so frustrated at this point and nervous of baby getting stuck again. They seemed surprised but agreed, so that’s what we did.”

 

 

 

The Unacceptable

Despite the draw of a catchy title, I refused to refer to any of these experiences as “ugly”.  A new life entering the world is never ugly.  But I feel that “unacceptable” is appropriate for these two experiences, and I hope that you do too:

“My midwife asked, whilst examining me to see how far dilated I was, if I’d like a sweep.  I was in agony so I said no.  She did it anyway.  I screamed and hubby said he had never seen me look so pained before or since.  She only said ‘done now’.”

“All going smoothly until I haemorrhaged.  I was rushed to delivery and the consultants managed to stem the bleeding, with a review scheduled to decide if theatre was necessary.  There was a question mark over retained placenta/products. The placenta was torn and was not confirmed as complete. I had another procedure to stem another heavy bleed with the review still scheduled for later in the day.  A junior consultant came and decided that they weren’t going to take me to theatre that day despite still having heavy bleeding.  I had not been given any food or drink (other than water) since the previous evening.  This was 2pm on Saturday.

After this, I didn’t see a midwife (nor anyone else) for hours.  My room had blood covered surgical instruments left on the side plus the swabs etc from the procedures, my catheter came out and I was left in a soaked bed for what seemed like a long time plus the bleeding was still very bad.  My buzzer was not answered for long periods of time. I was eventually transferred to a ward at around 8pm.  Once on the ward, I continued to bleed and clot heavily.  The midwife said this was normal.  My obs were low but I didn’t want a blood transfusion unless absolutely necessary.  There was no further mention of retained placenta/products and I was allowed home after 3 days.

This resulted in four and a half weeks later being rushed to surgery to have the retained products removed.  This was after 3 separate haemorrhages which again the community midwives said just needed monitoring.  I was lucky that I didn’t get an infection.  The advice in A&E was that I should have called an ambulance.”

I have a lot more #MatExp feedback to share, too much for one blog post.  I will put up more soon.  For now I will leave you with this illustration of the discussions at a recent Families & Midwives Together Conference I attended at Salford University:

Families & Midwives Together
Families & Midwives Together

What could have been better about the care you received?

 

Helen Calvert. 2015

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