Maternity Experience

Pregnancy Complications

“I was told I was going to have a big baby….” And then what happened?

A while ago on a Facebook birth forum I saw the phrase “you won’t grow a baby too big for you to birth”. It was a familiar phrase as it was something I would hear regularly on the homebirth e-group I was a member of back in 2010 when I was pregnant with my first. Back then I accepted it as the truth, but having been involved in #MatExp for nearly a year I have learned that few things to do with birth are that simple. So I asked the question on the #MatExp Facebook group:

Big Baby Capture

What followed was a fascinating discussion. Information was shared from lots of different quarters, and evidence was linked to. Experienced birth practitioners shared their views and a few themes started to appear. All along I knew I was intending to write up the discussion as a blog post so I was trying to keep up with the information and understand what was being said. As I opened up links to studies, trials, journal articles and so on my heart sank as I am not the best at analysing that kind of thing and it seemed at first glance that the evidence shared was somewhat contradictory. So I was concerned that I would end up inadvertently talking rubbish in this post.

And then I realised that this is exactly the problem. I am a woman of childbearing age who has had an education to degree level, English is my first language and I discuss birth and maternity pretty much every day. When we talk about informed choice we mean sharing all of the evidence plus the benefit of experience with pregnant women and their families, so that they can go through it and make their own decisions. Yet if I were writing this today as a woman who had been told she was likely to have a “big” baby I would be confused. And a little scared.

So it’s a good job I didn’t know any of this when I confidently went on to give birth to my 8lbs 13oz son on all fours on our bathroom floor.

From http://evidencebasedbirth.com/evidence-for-induction-or-c-section-for-big-baby/
From http://evidencebasedbirth.com/evidence-for-induction-or-c-section-for-big-baby/

Let’s pretend for a moment that I am in my third trimester and have been told by my midwife that she suspects baby is going to be a big ‘un. Probably a bouncing 9lbs tot. Before I go down the route of “doing” anything about that, or amending my birth plans, I have asked the #MatExp group for some information. What have I discovered?

Well, firstly we need to know a little bit more about this fictitious me. Do I have gestational diabetes? Am I classed as overweight? No? Okay then, we can stick with our issue being only the predicted size of my baby and keep questions of GD and BMI for another day if we may. Similarly, we will assume that I am physically able. So why are people sucking their teeth and looking concerned that baby might be of a generous size?

This is where we come to shoulder dystocia. “Shoulder dystocia is when the baby’s head has been born but one of the shoulders becomes stuck behind the mother’s pubic bone, delaying the birth of the baby’s body. If this happens, extra help is usually needed to release the baby’s shoulder. In the majority of cases, the baby will be born promptly and safely.” (From https://www.rcog.org.uk/en/patients/patient-leaflets/shoulder-dystocia/

In the majority of cases, the baby will be born promptly and safely?  So what’s all the fuss about then?  Well let’s look at this passage from the abstract of this article:

“Shoulder dystocia remains an unpredictable obstetric emergency, striking fear in the hearts of obstetricians both novice and experienced. While outcomes that lead to permanent injury are rare, almost all obstetricians with enough years of practice have participated in a birth with a severe shoulder dystocia and are at least aware of cases that have resulted in significant neurologic injury or even neonatal death. This is despite many years of research trying to understand the risk factors associated with it, all in an attempt primarily to characterize when the risk is high enough to avoid vaginal delivery altogether and prevent a shoulder dystocia, whose attendant morbidities are estimated to be at a rate as high as 16–48%. The study of shoulder dystocia remains challenging due to its generally retrospective nature, as well as dependence on proper identification and documentation. As a result, the prediction of shoulder dystocia remains elusive, and the cost of trying to prevent one by performing a cesarean delivery remains high. While ultimately it is the injury that is the key concern, rather than the shoulder dystocia itself, it is in the presence of an identified shoulder dystocia that occurrence of injury is most common.

The majority of shoulder dystocia cases occur without major risk factors. Moreover, even the best antenatal predictors have a low positive predictive value. Shoulder dystocia therefore cannot be reliably predicted, and the only preventative measure is cesarean delivery.”

Ah, okay.  So whilst MOST cases are not a problem, when there is a problem it can be very serious.  And most experienced obstetricians will have seen this happen, inevitably influencing their perception of the risks involved.  The teeth sucking is a bit more understandable now.

Apparently if I have a small pelvis it is more likely that baby will get his shoulders stuck. How do you know if you have a small pelvis? Small compared to what or whom? I have no idea but it appears to be a consideration.  One birth professional observed that “to me that ‘big’ is subjective in a lot of cases. A 7lb baby could be big to one woman whereas a 10lb baby could be average to another. There needs to be far more than just the picture provided by a (often inaccurate) scan. Woman’s own birthweight for example, her stature etc.” It was mentioned that pelvimetry used to be widely used but has been abandoned in favour of scans, due to a Cochrane review that found these measurements did more harm than good.

There is a higher likelihood of shoulder dystocia in bigger babies, that much is undisputed. Yet the language used when discussing this risk makes a big difference to how a pregnant woman might view the risk.  Contrasted with the passage above is this from Evidence-Based Birth:

Death capture

I suspect as with so many birth choices, women are likely to get the reassuring language from midwives who have confidently dealt with many instances of stuck shoulders, and more wary language from obstetricians who have seen first hand what can go tragically wrong.  

So in summary shoulder dystocia is more likely in bigger babies but on the whole it can’t be predicted and can usually be dealt with. It turns out that there are arbitrary cut offs for recommending Caesarean to prevent SD – 5kg in a non-diabetic woman. That means nothing to me but a quick Google tells me that is an 11lbs baby. My hypothetical nine pounder doesn’t warrant an automatic recommendation for a c-section then. So far so good.

But what position is my baby in? This is an important factor. I would argue that all pregnant women should be aware of foetal positioning and how to optimise it, but in this case it is particularly important as a malpositioned big baby could cause trouble. Let’s assume though that I have been on spinningbabies.com, haven’t been reclining on the sofa, have been doing headstands for nine months or whatever it is that is recommended. Baby is now head down and engaged and we’re ready for the off.

At this point it’s good to know that there is no evidence to suggest that it hurts more to give birth to a big baby. I cannot comment as my firstborn is the only child I have birthed vaginally so have nothing to compare it to. But the midwives on the group have been reassuring that being predicted a “big” baby does not mean increased pain in labour. Good stuff.

What I haven’t done (but what might have been recommended to me) – I have not had a growth scan. It appears that growth scans should be used to identify small babies (a discussion for another day no doubt) but not big ones. One group member commented “Ultrasound scans become increasingly unreliable the further along in pregnancy they are performed. Weight is an ESTIMATION can be up to 25% out either way. They base it on the abdominal circumference, head circumference & femur length – try doing it with yourself & see how accurate it is!”  

A birth professional went on to say “Growth scans are pretty hopeless in the third trimester – the only thing that is useful is a regular plotting of growth to try to identify a sudden growth spurt that could indicate a problem. A one off growth scan late on in pregnancy basically just leads to unhelpful fears on all sides.”

Which begs the question, how do we identify the potential 11lbs babies who “require” a c-section birth?

So I haven’t allowed anyone to worry me further with a most likely inaccurate scan reading. We think baby is going to be big but not so big that I am going to be encouraged to have an elective c-section, so I’m happy to go ahead with my vaginal birth.

This is where we come to the issue that dominated the discussion. The position that women labour in can make a HUGE difference to the outcome when they are birthing a large baby. Labouring on their back is most likely to be unhelpful. Labouring on all fours is most likely to enable them to birth without intervention. Certainly my experience – I could not bear to be in any position other than kneeling up for my entire labour, simply could not bear it. Lying down was absolutely out of the question.

One group member had a wealth of information to contribute and commented “There’s plenty of evidence to support programs like birth ball use, not just gentle bouncing but using as a structured exercise plus also designing maternity units/rooms to encourage movement and position changes and upright movement.”

A midwife explained “I worked with a lovely obstetrician a few years ago (I have worked with many wonderful obstetricians). She was leading the skills and drills component for obstetric emergencies of the yearly mandatory training. We were practicing what to do in the case of a shoulder dystocia with a mannequin. She looked at me and said, of course we all know that if we do this (turning the model over in to what would be an all fours position) we wouldn’t have to be doing this at all.”

And one of our obstetricians added “in terms of labour progression, size is not nearly so important as baby’s positioning and flexion.”

The impact of pain relief was also mentioned:Of course this is impacted by maternal position too, often compounded by an epidural that softens the pelvic floor muscles reducing the baby’s ability to rotate on the pelvic floor.”

Let’s recap. My midwife has said that it is her experienced opinion that I am going to have a big baby. I have declined a growth scan but we are both confident that baby won’t be topping 11lbs. So we’re going for a vaginal birth, and have done everything we can to ensure baby is in a good position. I am then being encouraged to be active in labour, labour on all fours and so on. There is no reason to believe that I will experience more pain due to baby’s size. There is an elevated risk of shoulder dystocia but my birth team are trained to deal with that. Hmm, okay, on reflection I would make the same choice I made back in 2011 when I hadn’t had this conversation. Home waterbirth with experienced midwives please! Especially, for me as an individual, “big” babies are normal – I was 9lbs 11oz at birth myself.

Does the above sound like the experience most women have when a big baby is predicted? Let’s ask some real life women shall we? Here I am indebted to the fabulous women on my other Facebook group who have shared their stories with me.

I was told I would have a big baby. The midwife measured me way off the chart at 36 or 38 weeks can’t remember which. Went for growth scan. Again measured me pretty big. Appointment with consultant, he measured me big. Straight aways did a growth scan. I was then booked in for an induction the following week. Was in from the 25th and had him on 29th (due on 5th July) he was only 8lb 2oz.” What was the reason for the induction? “Not sure. They said as it was my first I probably would go over so as he was measuring big now it could be more of an issue in 3 or 4 weeks.”

My 1st baby was 9lb 14oz and got stuck with shoulder dystocia and born with the ventouse.” And what positions were you labouring in with baby no. 1? Were you on all fours at all?  “No! I believe position/ventouse were what caused her to be stuck! I was dehydrated so they made me stay in the bed on my back to be monitored!”

“I was told my little boy was a big baby and I had to have a growth scan. I was then induced a week early due to his size. He weighed 8lb 15oz and I had a 4th degree tear and had to be rushed to theatre.” What did they say were the risks with him being big? Did they explain why they wanted to induce you?  “The explanation for me being induced was if I was left and went over I would have had a tough time, but looking back now I wish I had opted out of being induced as I blame that for the complications.”

I was measuring big for dates at my midwife appointments from about 24 weeks. I was eventually sent for a scan to rule out polyhydraminos at about 32 weeks. The scan results were ok and showed that my baby’s measurements were on the 95th centile. I was then changed to higher risk consultant led care. They told me it was due to the baby’s size and the increased need for intervention during delivery, e.g. forceps, etc. My baby was predicted to be 9lb 9oz maximum and she was actually 10lb 6oz. I was in slow labour for 6 days. I had to have an oxytocin drip to get me from 7cm but I couldn’t get passed 8cm as her big shoulders meant her head wouldn’t press down on my cervix! As a result of being on the drip, I wasn’t able to get in different positions in labour and was mainly confined to the bed. I then had an emergency c-section due to failure to progress.” How did all the talk of having a “big” baby affect how confident you felt in being able to give birth?  “To be honest, it did affect how confident I felt giving birth. I was then very nervous at the prospect of tearing or that I’d have difficulties during the birth and would need forceps, etc. I was very worried that something would go wrong. To be honest, I felt very relieved when the consultant said I needed a c-section.” 

I commented that I wondered whether that was the reason the mum above struggled to dilate. Rather than failure to progress perhaps her caregivers should be have been labelled with “failure to encourage”.

There was one rather different story, although the mum in question was surprised by how her consultant’s advice varied from what others were experiencing: Was told based on my daughter being 10lb that my little boy would be big. The midwife referred me to a consultant as my fundal height was bigger than even my little girl was! Tested me for GD which I didn’t have. Consultant said he was going to do absolutely nothing about it which varied massively from my peers at nearby hospitals who were being induced early. He said inducing a large baby is dangerous as they’re more likely to get stuck and if I got my little girl out this one would be fine! Bit worried but I trusted him.”

And what of those women who had not been told to expect a big baby?

“I had a 9lb 4oz baby but wasn’t expecting him to be ‘big’ I had a tiny bump and was told he was only going to be about 7lb.  I had him naturally with no complications at all. A few stitches externally but that was all.”

“My 2nd baby was 9lbs 6oz and no one knew he would be that big as my first was 7lb 11oz. Labour was very quick and vaginally delivered with 1 stitch.”

If 9lb2oz is classed as a big baby then mine was! He was 13 days over so probably wouldn’t have been so big if I’d gone on time. Nobody told me he was going to be big at any of the extra monitoring appts I had the week before he arrived all on his own, no help, drugs or hospital. I did tear slightly but midwife was happy for me not to go to hospital if I didn’t want to.”

I wasn’t told I was going to have a big baby, I was tested for diabetes at one point because my bump had grown quite quickly but I didn’t have it. My little boy weighed 9lb 15oz, I was in labour for 6 and a half hours and didn’t have any complications. I had a few stitches afterwards but nothing major.”

What can we say in conclusion?  When a baby is identified as potentially being “big” are all families given the information that we have discussed here?  Do all birth professionals agree with the general thrust of this post or have some important points been missed or misrepresented? And if I have got it all wrong what does that say for the idea of “informed choice”?  Because this is my best understanding of the issues following a detailed discussion with experienced birth professionals.  There are plenty of other birth stories from the mums on my group which make it clear that women are routinely being encouraged down the route of induction without fully understanding why, only that baby is going to be “big” and that is some kind of a problem.  And so many of these stories end in instrumental deliveries, emergency c-sections and, at worst, traumatic births.  Would it not be preferable for women to have the issues fully explained to them and to be encouraged to have an active birth where, in all likelihood, they will be capable of giving birth to their child?

I am just glad that my “big” baby is here, safe and well, and now in his second week at primary school.  Decisions always seem simple in hindsight.

Big Baby

Some of the links that were shared as part of the discussion not already linked to above:

Shoulder Dystocia – RCOG green top guidelines

Rebozo Technique for Foetal Malposition in Labour

The Effect of Birth Ball Exercises during Pregnancy on Mode of Delivery

Reducing Length of Labour and Caesarean Surgery Rate Using a Peanut Ball for Women Labouring with an Epidural

After Shoulder Dystocia: Managing the Subsequent Pregnancy and Delivery

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When “Normal” Seems To Be The Hardest Word

Expo Capture 2

 

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:

Expo Capture 1

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.

Normal1

 

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:

Normal2

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:

Normal4

Normal3

And from this in 2007:

Normal5

Normal6

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

Normal7

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”.

Normal8

 

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.

Normal9

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:

Normal11

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:

Normal12

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:

Normal13

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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Time to Act for Continuity of Care

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

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

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

Continuity

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

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

The suggested actions from the discussion that followed were:

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

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

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

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

Campaign for Choice
Campaign for Choice

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

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

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

 

Helen Calvert

@heartmummy

2015

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#Matexp – Emotional Wellbeing – what do families really need?

 Supporting families – Emotional Wellbeing


#Flamingjune is well under way and there has been so many wonderful conversations taking place on the Matexp facebook group. As part of this months campaign, ACTIONS to improve services have very much been at the forefront with everyone sharing ideas to make sure support given to families is the best it can be.

With this in mind one of the subjects discussed was Emotional Wellbeing. Many shared heartfelt stories, and personal experiences as well as ideas that would have made a difference them and their families.

Matexp asked;

  1. How much do you feel your pregnancy, birth and postnatal care affected your emotional wellbeing?
  2. How do you think we can help prepare women and their partners for the impact that birth and caring for a new baby has on emotional wellbeing ?
  3. What supported or helped you to protect your emotional wellbeing?
  4. What can be done to help health care professionals be able to support families better?

Many commented on how we often under estimate the impact having a new baby has on a family. It was said that ‘adapting from working life to being at home was overwhelming’, ‘that often dads are working long hours and need support too’ and having somewhere to go to talk to others and relax was vital. Emotional support was mentioned as being a “basic need” for families.

One comment noted that ‘real life’ parenting needs to be discussed at antenatal contacts. “We are bombarded with the prefect images of parenthood, I don’t think people are prepared for the realities of parenthood – being totally exhausted but this little person still needs feeding and there is no milk in the fridge so you cant even have a coffee to wake up you”.

Another commented’ ” professionals need to understand the stresses which parents face not just with the birth, but financial, logistical etc”. What suggestions were made that would help? “By looking through the eyes of the patient, and trying to see things from their point of view”. Yes walking in another’s shoes so to speak showing empathy, and understanding helps provide support that protects the emotional wellbeing of families.

Many voiced feeling left alone, isolated and ‘fending for themselves’ after the birth of their babies and how this impacted their emotional wellbeing. Many felt afraid to voice they were struggling with motherhood and kept it to themselves worrying they be dismissed or viewed as ‘failing’.

Others voiced how important good support from health visitors, peer support and support groups was to their emotional wellbeing and not just for mom but dads too. In fact is was mentioned how important it is to ask dads how they are doing too!

Again and again support was mentioned for birth trauma and loss of a baby. Things such as professional counselling to be available as standard and peer support on wards and units. As well as health professionals knowing where to signpost families for support including local charities and national organisations.

One comment read “the single biggest thing would have been to treat us respectfully”. Very sobering.

So what were some of the actions that came out of the discussion to help with emotional wellbeing?

  • Maternity units to have specially trained staff to care for those that have suffered birth trauma, loss or mental health issues.
  • To remember that care involves emotional support not just physical.
  • Peer support for families on wards and in NICU.
  • Specialist counselling services available as part of post-natal after care and on NICU unit so families do not have to leave their babies.
  • Antenatal support on ‘real life’ caring for a baby, as well as how to look after their emotional wellbeing.
  • After birth de-briefs for sharing of experiences both good and bad to help improve care given.
  • Remember that dads need support too.
  • Health professionals to be aware of support available to families so they can signpost.
  • For all staff supporting families to show kindness, compassion and empathy and provide care that is patient-centred meeting individual needs.
  • Most of all treat families with respect. “letting mums and dads know that being good is good enough – they don’t need to be perfect”.

Emotional wellbeing is important for families, by sharing experiences, listening and working together we can help improve the maternity experience for all.

There is beauty in giving to others

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Emma Jane Sasaru

@ESasaruNHS

 

 

 

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Ways in which my c-sections make me amazing

I’ve had 4 c-sections (2 emergency, 1 elective and 1 planned due to medical reasons) and time and again I find myself making excuses, or defending myself when the topic of birth comes up. I’ve also spoken to many women who feel they failed, or did not give birth because they had a c-section. I’ve come to the point now where I want to celebrate the way that my babies came into the world, and show other women that they did NOT take the easy way out. A c-section is not the easy option and there is no need to feel ashamed either.

If you’ve had a c-section, I hope you know that you are amazing.

I’ve had four c-sections. And until now, I have always been- if not ashamed- a little defensive over them.

But baby was in distress, so the section saved my life.

My son WOULD have died without a section.

It was the easiest decision for me after two traumatic failed labours and emergency sections.

The doctors said it was the safest and only way my baby could be delivered alive.

Ways in which my c-sections make me amazing~ Ghostwritermummy.co.uk

I’ve always been a little anxious when meeting new mums and the conversation turns to the birth. I’ve always assumed that there was something wrong with my body. Something wrong with me. I failed. I didn’t do what I was supposed to do.

But I’m tired of defending myself. I’m tired of feeling like I never really gave birth. So what if my baby came out on the operating table? I might not have given birth in the conventional way, but I gave life just the same. Who cares how the babies arrived?

Ok, so I care. I do. I really care. I care about the fact that my very first experience of childbirth was terrifying. I was ignored and laughed at. I was dismissed. I was given drugs and injections and Ways in which my c-sections make me amazing~ Ghostwritermummy.co.ukexaminations that did not help me. My baby was taken from my body not just once, but for a second time too. I was left in pain. I was taken to the brink of death and my baby almost died. I was sent to sleep while surgical hands reached inside to find my blue baby and bring him out into the world. I was not there. And I care about that. I care so much.

And because I care, I want to make it clear that those first two birth experiences make me amazing. I laboured for hours each time. Alone. Without the support of a midwife to hold my hand. Without the knowledge that I was a strong, capable woman. Without power. I laboured despite myself, for hours, with no pain relief. And just when I thought I could take no more, I was taken for major surgery. The mask over my face and the knife to skin just moments later.

And if you know what it is like to labour so intensely, with the sole purpose of bringing your baby into the world, only to realise that you will need to see that happen in an operating theatre… then you will know that I am amazing.

And if you know what it is like to labour so intensely a second time, with the desperate need to bring your baby into the world otherwise he might die, only for the world to go black and to wake up with a baby by your side… then you will know that I am amazing.

Ways in which my c-sections make me amazing~ Ghostwritermummy.co.uk

And if you know what it’s like to move your battered body a few inches across the bed, to gingerly ‘swing’ your legs around so that your feet brush the floor, to step lightly onto the ground for the first time since ‘it’ happened… then you will know that I am amazing.

To stand in the hospital shower weeping in pain each time the water jets strike the cannula in your battered hand; cursing that cannula because you didn’t want to be there, in that shower, in pain, not again. To wince in pain with each step you take. To choose to spend the night sitting up in a chair rather than to lie down in a bed because it is slightly less painful to do so. To need a cushion so that you can laugh. To still hold on to the belief that your body might make it next time.

If you know what that is like, you will know that I am amazing.

 

 

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My HELLP Syndrome Experience (Part 1)

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

“Heartburn,” I thought.

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

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

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

I was very emotional. Normal pregnancy hormones.

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

This went on for six days. Getting progressively worse.

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

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

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

How wrong I was.

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

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

It is early, far too early.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am completely, blissfully, away with the fairies.

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

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

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

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

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

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

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

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

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

I do not have time to be bored.

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

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

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

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

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

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

Hugo on the day he was born

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

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

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

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

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

In intensive care

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

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

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

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

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

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

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

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

Some of my beautiful bruises.

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

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

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

Cheeky Hugo, kicking away and grabbing his wires.

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

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

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

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

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

A cuddle with Mummy

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

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

Hugo, Martin and me

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

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

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

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

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

HELLP. What a crappy acronym.

There is nothing helpful about it.

It is a difficult thing to get your head around.

Proud Mummy alert: what a beautiful boy!

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Don’t call me high risk! #MyPositivePregnancy

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

Don’t call me high risk.

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

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

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

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

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

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

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

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

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

 

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IUGR: our journey so far

The following post was written on Ghostwritermummy when I was 32 weeks pregnant. Elsie was born at 37 weeks and you can read about her birth, and more about our IUGR journey here.

IUGR

IntraUtarine Growth Restriction.

A baby that is not growing as it should be.

Not just small.

Not just on the last percentile.

Not just the bottom of the average, as some babies must be.

A baby that is not thriving where it should be.

A baby that is deemed to be better out than in.

A baby at risk.

A high risk pregnancy.

An IUGR baby~ ghostwritermummy.co.uk

When I was born, I was SGA. Small for Gestational Age. The doctors sent my mum for an x-ray as they were convinced she had her dates all wrong. I was born one week later, smaller than I should have been. My eldest was SGA. My third baby was SGA. These facts put me at risk for another SGA baby, or for an IUGR baby. For the record, SGA does not mean IUGR, but IUGR babies are all SGA. Still with me?

At my booking in scan, my consultant booked three growth scans for us and gave us a personalised growth chart. No more plotting my baby on the national average. This baby was to be measured according to what is normal for me. This was reassuring, but we were convinced that the growth scans were unnecessary. We’d had them with all three previously, one for each, and were told each time that baby was well. On the smaller side, but healthy and thriving and gaining weight well. We decided that we’d attend the first growth scan, but we’d probably request for the others to be cancelled. The biggest thing was that we wanted a VBAC. So we wanted to do what the doctors seemed to think was important. But if, as we were sure would happen, the doctors agreed that baby was growing well, we felt subsequent growth scans were pretty pointless.

So the first growth scan arrived at just over 29 weeks and from that point onwards everything changed.

IUGR had been mentioned in previous pregnancies, but always dismissed. This time though, we were told that baby might not be ok after all. There was no question that follow up scans would be necessary. Four weekly appointments were changed to two weekly, with a view to reaching 34 weeks gestation. Considering our first two were both born post 40 weeks, the idea of an early baby was a huge shock to us. We’d honestly assumed we’d be told all was ok, that baby was small but perfectly fine. Not so.

The second growth scan was devastating in many ways. It was found that baby was still small, and that blood flow from the cord was reduced. Baby was not receiving enough oxygen. Baby was starving inside of me. Not thriving. Not just small. Not just at the bottom of the percentiles. Not just SGA.

Appointments were amended again, this time to weekly and we were sent home with even more questions than before. We’re still unsure what it all means, and the only thing that is super clear now is that there will be no VBAC. There may be an early baby. There may be special care. There may be health issues later in life. There are so many may bes. There are no certainties.

During all of this, the one thing that has been drilled into me is to monitor baby’s movements closely.

iugr baby_ monitoring_ movements~ ghostwritermummy.co.uk

I have never ever felt concern over this before. Three previous pregnancies and I had always felt confident that baby was well and kicking as it should be. This pregnancy has always been different though, even before we knew anything was wrong. Movements were late; later than previous pregnancies. Movements were scarce for a long time. We put this down to the position of the placenta, and we’re still told that the fact that it’s anterior could be the reason why movements are still not as noticeable as they are supposed to be. Following the second growth scan, I was put onto the monitor and everything seemed fine.

The next scan did not measure growth. Instead the fluid around baby and the flow from the cord was scrutinised, and all found to be within normal parameters. Hooray! Good news, at last. Although the doctors were careful to advise me that weekly scans were still necessary, and that baby was still small. It was also made clear that the results from the scan were normal today and may not be the same next time. Again, I was put on to the monitor to check baby’s movements and although they were definitely reduced from the last time, they were still sufficient enough for me to be allowed home. No decelerations and totally normal readings all round.

And so here we are. Days away from another scan, where I will be 33 weeks and 5 days pregnant. Potentially days away from delivery. The magical 34 week mark. And so many questions.

Is baby really IUGR? Or just SGA? Is 34 weeks really a suitable gestation for delivery? With each week that passes now, the risk of stillbirth increases, and yet there are risks associated with premature birth if they take baby too early. It is still hard for doctors to accurately diagnose and in many cases this can only be done once baby is here. If the birth day is at 34 weeks and baby is not IUGR, the chances of a fast recovery and minimal issues are great. If baby is IUGR, more help will be necessary. So many ifs!

We wait, and yet the waiting is excruciating. People keep saying that the longer they leave it, the more weeks that baby stays in, is better. But there will come a point where that is no longer true. There will come a point where baby is not moving as it should and they will decide to deliver. And I am so scared that they won’t make that decision at the right time.

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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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#MatExp – Caught in the Middle

I am very grateful to yet another member of my Facebook group for providing me with her maternity experience to share with you.  In her own words…..

OnetoOne Midwives
OnetoOne Midwives

“My antenatal experiences with my NHS midwife and one consultant led to me transferring to the One-to-One Midwifery Service from about 30 weeks into my second pregnancy. The main issues I had with the NHS were:

    The cold and distant manner of the midwife
    The total lack of concern or questioning when I declined the breastfeeding DVD (as a natural term breastfeeder with my older son, with intention to tandem feed, I felt I didn’t need it – the midwife simply moved on to the next item and made no attempt to find out why I didn’t take the DVD. I found this shocking.)
    At a consultant appointment the consultant informed me that she had booked me in for an induction on my due date, due to my maternal age. No discussion. told her that that would not be happening.
    I had my heart set on a MLU, natural water birth, and I raised the issue of booking an induction without discussion or my consent issue with my MW. Her response was that I will do as the consultant decides. At this point I referred myself to One-to-One.
    Final point – one slightly raised blood pressure reading triggered off me being designated a high risk pregnancy, so I would have found myself on the consultant led side of things to give birth. Another big driver to move service. My BP was fine throughout the remainder of my pregnancy (with the help of Labetelol).

The whole experience was very ‘tick boxey’, with little or no consideration of the overall picture i.e. my health and fitness, my wishes, previous birth etc. I was very disappointed by the apparent lack of breastfeeding promotion.

So I had my second baby by natural home water birth, with the support of One-to-One Midwives. I ended up in hospital for ten days postnatally with HELLP Syndrome. One issue arising there was the strained relationship, and lack of joined up care provision, between the NHS staff and One-to-One. Before transferring myself to One-to-One, I had heard from a fellow NCT Refresher class Mum, that she had had a bad experience in this regard also.

Arrowe Park Hospital
Arrowe Park Hospital

I was transferred via ambulance to Arrowe Park Hospital following the birth of my daughter in April 2014, with what turned out to be HELLP Syndrome. My daughter came with me. We were in for a total of ten nights.

Although I was a patient, my daughter was not. This became a problem when she needed to have her 72 hour check. In the initial stages, my partner was doing the communicating with my One-to-One midwife; and she told us that my baby would have to be taken to an alternative venue for the check by noon on the Saturday. I was in no fit state to add to the discussion, being quite poorly and ‘not with it’.

Ostensibly One-to-One staff were not allowed on the hospital premises to carry out the check; NHS staff could not do it as my daughter was not a patient. I did become involved in the discussions when Saturday morning arrived, my partner was trying to arrange child care for our older child (not easy as we have no family close by), and it dawned on me that my newborn baby was about to be taken away from me. Breastfeeding aside, that would be traumatic for all involved – baby, me and Dad!

Bearing in mind that the main issue for me was dangerously high blood pressure at that point, I was drawn into having direct telephone conversations with One-to-One, and quite heated talks with NHS staff – who made out that there was absolutely no way One-to-One could come into the hospital to do the checks – no insurance I think was the issue from memory? As my baby was not a patient then they definitely could not perform the check – to do so would generate a second NHS number for her, which I was told would have the potential to cause us problems when trying to register her birth. The systems would not be able to cope with it. We felt that systems were taking priority over the well-being of our newborn baby.

In the end a One-to-One midwife did come into the hospital to do the check. There was an uncomfortable atmosphere between the two sets of staff.

On a side note, my daughter was diagnosed with a mild tongue tie and a referral supposedly made. In fact no appointment ever came through. Fortunately the tongue tie was never an issue.

My One-to-One midwife came to see me in hospital on a number of occasions; each time I picked up on tension between the parties.

Apart from the stress around my daughter’s check, I have to say that the majority of the care I received on the labour ward was fantastic. Apart from one incident where I suffered a huge loss of dignity and lack of respect or concern for my personal space and being. In fact I felt totally humiliated. It happened on my final night at Arrowe Park (so day ten of my stay); I was rushed down from the maternity ward to the labour ward as my blood pressure was so high. I was given intravenous drugs to bring it down; it would have been a trip to the cardiac unit if this had not worked. I needed the toilet – and not just a wee. I was told I had to remain on the bed and my request to use a commode was refused. So I had to use a pot under the sheets. Except the sheet was inadequate and I knew that I wasn’t covered up. So I tried to throw my dressing gown over my knees. People were coming and going in and out of the room. I had a sudden moment of realisation of the total indignity of the situation – people could well have been able to see me trying to have a poo, knees up in the air, largely uncovered. I cried. I just wanted to go home, with my baby.”

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