Maternity Experience

Leigh Kendall

#MatExp Flyers and Stickers Are Available!

Want to get out there and spread the word about #MatExp?

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Order some flyers and stickers! They’re the ones we used at NHS Expo, as per the image above.

I created the artwork and ordered the flyers and stickers through Instantprint. You can contact them on 0191 2727 327 or email office@instantprint.co.uk, quoting reference number 1708648. They will source the artwork for you and liaise with you to make sure it is what you need. You just need to let them know how many you would like (and of course arrange payment!).

The flyer is A5 size, with this image on one side:

The #MatExp information poster!
The #MatExp information poster!

and the #MatExp logo on the reverse

MatExp logo
MatExp logo

The stickers say…

MatExpblogbadge

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What Will YOU Make Happen for Oxytocin October?

Welcome to Oxytocin October!

What’s that all about, then, I hear you ask?

Well, oxytocin is a powerful hormone often known as the ‘cuddle hormone’ which is greatly stimulated during sex, birth, and breast feeding – all of which are relevant to #MatExp.

You may already know all about oxytocin (especially if you are an obstetrician or midwife, one would hope!) but if you don’t, here’s a brief overview of what the hormone does…

  • It causes cervical dilation and contractions during labour (and it is crucial however and wherever the baby is born)
  • When crossing the placenta, maternal oxytocin reaches the baby’s brain and induces a switch in the action of a neurotransmitter which silences the baby’s brain for the period of delivery and reduces its vulnerability to damage
  • It aids milk production from the mammary glands to the nipple;
  • It plays a central role in sexual arousal, aids orgasm, and there’s speculation the muscle contractions may help the sperm and egg to meet.
  • It has a role in increasing trust and reducing fear – which are inherent in the aims of #MatExp: to enable women (and staff) to the best-possible experience of birth with safe, individualised care as detailed in our Heart Values
  • It can aid bonding within groups and foster positive attitudes.

Isn’t oxytocin incredible?

The point of this brief biology lesson?

Oxytocin, in short, makes things happen. And so can you, because you are incredible too.

For Oxytocin October we would like to ask you what you will do to make something happen to improve maternity experience?

As ever, it doesn’t matter what your action is – big or small, all actions are valued. It doesn’t matter if it’s something you can start doing every day, whether you can start and complete during October, or if it’s a slow-burning action that will take time to come to fruition.

The important thing is to act. JFDI!

If you’d like to tell us about your action, that would be great. You can do that on the Facebook page, on Twitter (#MatExp #OxyOct) or via our contact form. It’s so we can share all the great work that is going on, we can share learning across the country, and measure the impact of our campaign. Remember we’re steering #MatExp, no one is ‘in charge’ so while by all means ask anyone involved for advice you don’t need to ask for permission!

My action will focus on baby loss, because it is also Baby Loss Awareness Month during October, with the awareness day on October 15. My actions will involve activity relating to #HugosLegacy – working to improve support for bereaved parents. I’ll be writing more about that on my own blog.

(I got the bulleted information from Wikipedia – as I say it’s a very brief overview!)

What will

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National Maternity Review – National Drop-In Listening Events

The National Maternity Review held its first listening event on July 23. #MatExp was represented by Flo, Gill, and Leigh. If you were unable to attend, you can read more about what happened in Gill’s fab, visual Steller story and Leigh’s blog.

The NHS Maternity Review wants to hear from everyone!

You are invited to come and share your views and experiences of maternity services and care.

The NHS Maternity Review will be hosting a number of events around the country as part of its national tour to hear how women, their families and advocates, provider organisations and the professional bodies involved in maternity care feel about the current services. We also want to know what you would like the Review Panel to bear in mind as our members go about their work. These events are an opportunity to share your experiences, contribute to the work of the Review, and have your voice heard.

The feedback from these events will contribute directly to the work of the Review and we are keen to hear from women, their families, those who work in maternity services and other professional bodies. All are welcome to come and share your views.

The Review will be visiting the following locations on the dates below. Final details for some of these events will be circulated in due course.

  •  Tuesday 4th August, 10am-7pm – The Lancaster Suite, Preston Guildhall & Conference Centre, Preston
  • Friday 7th August, 9am-4.30pm – Morton Park Family & Community Centre, Carlisle
  • Thursday 13th August, 10am-8pm  – Holyfields Centre, Birmingham
  • Tuesday 25th August, 10am-7pm – Acorn Children’s Centre, Taunton
  • Wednesday 26th August, 9am-7pm – venue tbc, Plymouth
  • Tuesday 1st September, 9am-7pm  – St Nicolas Centre, Ipswich
  • Wednesday 2nd September, 9am-7pm – The Kings Centre, Norwich
  • Friday 4th September, 9am-7pm  – venue tbc, St. Albans
  • Thursday 17th September, 10am-7pm – venue tbc, Sheffield
  • Friday 18th September, 10am-7pm venue tbc, Manchester
  • Monday 21st September, 10am-7pm – venue tbc, East London
  • Wednesday 7th October, 10am-7pm – venue tbc, Newcastle

 

For more information, please contact maternityrsvp@luther.co.uk (who are organising the events for the Review).

 

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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 Burns On!

Flaming June was well-named – it was so busy I think I could see smoke!

The month got off to a flying start with the launch of this website, the Facebook page, people sharing their action selfies – and so much more!

My other half became unwell, which coincided with my return to work after a 15 month absence.

As well as that, I managed to squeeze in:

  • Co-hosting a #PNDHour chat about baby loss,
  • Talking about my #MatExp journey at an SCN event,
  • My action post – #saytheirname appeared in the Huffington Post,
  • My post about what I wanted the National Maternity Review to knowwas Mumsnet’s Blog of the Day.
  • Talking (with lovely Susanne) about MatExp at the BritMums Live conference and being deluged with interest!
  • Maintaining my own blog,
  •  A wonderful week’s holiday in France (and it’s little wonder I needed to sleep so much during the holiday!).

Women have fed back that:

  • They want to be treated as an individual
  • They find terms like ‘low risk’ and ‘high risk’ unhelpful for a range of reasons, including that life is rarely black-and-white, and managing expectations.
  • They understand the evidence behind advice and practice, and do not want to be preached to. They want to be engaged in conversation as an equal, listened to with compassion and empathy, and helped to understand in a way that is useful to them where necessary.
  • Language is so very important – the words that are used are crucial, as is the intonation and the order you put words in a sentence (eg open questions – “Would you like…” “May I…” rather than “You must…” “I am going to do this to you…”).
  • Better efforts are required to meet the needs mums whose babies are being cared for in neonatal units – while the mum is in the postnatal ward, and after discharge to make sure she does not miss out on the usual postnatal checks, as this can often fall between the cracks.
  • Parents who have experienced the death of a baby need better access to support – too many parents are currently left to find their own support, or have to do without. This is unacceptable.
  • There is a lack of support after birth trauma. Mums have said they’ve been told to ‘get over it’, their experiences invalidated. This is also unacceptable.
  • More consideration needs to be given to birthing environments. For example, midwife-led centres seem so lovely, with attractive furnishings – and they seem especially lovely in comparison to many hospital labour wards. It can seem like giving birth in hospital (often the only option for ‘high risk’ women) is a punishment for things outside our control! Would it be possible to make hospital labour wards a bit homelier to reduce the disparity? It could help reduce some of the polarisation of opinion about where is the best or safest place to give birth (the best or safest place to give birth is the place that is appropriate for the woman and/or baby’s individual needs, whether than is in hospital, an MLU or at home).

So that’s Flaming June, in a nutshell. Has our fire burned out? Goodness, no!

What women (and men!) have told us spurs us on, our fire burns forever brighter.

Please do get involved! It is everyone’s business. Getting involved in #MatExp is like a no obligation quotation. We understand that life ebbs and flows, the time you have or are able to commit will fluctuate. There might not be anything that piques your interest now, but who knows what might happen next month, or in six months’ time (we certainly don’t – we’re making it up as we go along!).

We encourage people to find a way to engage that is relevant to you, where you are in life, the time you have on your hands.

For example, my lovely friend Jennie started a Charity Chat series on her blog, and information on recommended books for children dealing with grief. So much support is out there but it can be difficult to find. This will provide an invaluable resource for other parents and families.

Do also have a read of Flo’s post with ideas about how you can get involved.

For my part, I am going to continue encouraging people to #saytheirname; to talk about Hugo’s story, and the learning from that; to help reduce the taboo surrounding baby loss; to talk about #MatExp

We know doctors and midwives on the whole want to give women and their babies a safe experience that is as positive as possible. It’s about asking those who care for women to take a step back and reflect on their practice and think about what they could do differently.

With passion and determination we can together make a difference to the experience of women and babies in maternity services across the country – and to the experience of staff who care for them.

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All Actions Big and Small

June is our month of ACTION for the #MatExp campaign! All actions big and small are welcome and very valued.

Actions don’t need to be huge or onerous. They could be something you’re already doing. For example, my action focuses on bereavement support for parents who have lost a baby. It is an extension of my blog, and the work I am already doing as part of Hugo’s Legacy.

Your action could be as straightforward as telling everyone you know about #MatExp, and encouraging them to get involved.

If you’re a health professional, it could be something as simple as making sure you always say #hellomynameis. Or, your action could be doing something differently based on feedback from a woman in one of the #MatExp social media channels.

It doesn’t really matter what your action is. Your action should just be something that is relevant to YOU. It should also be something that feels manageable and achievable.

We all have busy lives. Like with any change, to be sustainable it needs to be part of your life, not in addition to it.

You may have seen some comments from folk saying they want to do more, and that’s brilliant. But please remember that is pressure they are putting on THEMSELVES. We think it would be brilliant if everyone made an action, but there is no pressure from us.

There is also no pressure to do the action during June. #MatExp has already achieved so much, and generated so much activity since its official launch at NHS Change Day in March 2015, we have designated want to maintain the momentum.  Dependent on your chosen action, it might be something you will do every day, or it might be something it is difficult to put into action for some time yet. Throwing a few clichés around, Rome wasn’t built in a day, and remember how you eat an elephant: in small chunks!

#MatExp is a grassroots movement – that is, it’s led by us all. No one is ‘in charge’ as such. That means you don’t need to ask anyone for permission to do an action (caveat: dependent on your action, of course: you might want to get permission from someone in your organisation if your action involves something like moving a ward!).

Do share with the #MatExp community what your actions are, or about the actions you’re thinking of making, though. That’s not just because we’re a nosey bunch: by sharing our thoughts, we can collaborate by contributing different ideas from our own experiences and expertise. By doing that we can help each other out, and potentially make an even greater impact.

We have seen from our discussions on Twitter and in the Facebook group that discussions around actions create all sorts of lightbulb and penny drop moments.

You can:

  • Tweet using the #MatExp hashtag
  • Join or start a conversation in the #MatExp Facebook group
  • If you have a blog, you could write a post about the action you are thinking of making, or have made, and add it to our linky
  • If you don’t have a blog, you can tell us about your existing or proposed action through this contact form
  • You can also share your action by taking an action selfie and sharing it on social media. There is a template you can print out on this page.

Here’s my selfie!

LeighActionselfie

Together we are stronger.

There are no right or wrong answers!

Don’t worry if your action seems ‘too small’. No action can be too small. There are no points to be scored, no prizes to be given – and that’s not just because this campaign is run on zero budget – scores are not what #MatExp is about. Making an action that impacts on even one person is amazing, valued, and very worthwhile.

You may have heard of the starfish story:

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We hope that makes sense. If you need any guidance or would like to do some brainstorming or have ideas you’d like to share, please do throw it out to the #MatExp community – on Twitter, Facebook, or by looking at some of the ideas on this site. The principle that underpins #MatExp is identifying and sharing best practice across the nation’s maternity services.

There is no false modesty involved when we say we are making it up as we go along – we really are. And that means YOU can help influence the directions #MatExp takes.

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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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The #MatExp Lithotomy Challenge

#FabObs Florence Wilcock ensured that her roles as obstetrician and mother blurred a bit more (and took many of her colleagues by surprise) when she did something truly wonderful in terms of making people think, really think about the experience of the women they are caring for. She walked in their shoes, which on this occasion involved taking off her shoes…

 

It is brilliant that Flo has taken the time and trouble to reflect in such detail and share the learning…

Lithotomy challenge graphic

Florence Wilcock writes: For NHS change day I wanted something that made a statement that said “#MatExp has arrived, take notice, we are improving maternity experience, get involved!” I couldn’t quite think of the right action until I saw a twitter exchange with Damian Roland back in December and watched a video where he described his spinal board challenge from NHS Change day, 2014. I had a light bulb moment thinking what would be the maternity equivalent? Lithotomy!

Lithotomy is when we put a woman’s legs up in stirrup; sometimes this can be essential for an assisted birth with forceps or ventouse (suction cup) or if stitching is required. But sometimes we use lithotomy position for normal birth or when stitches are minimal.
Changing times - castor oil2In our #MatExp Whose Shoes? workshops, my favourite card is one based on Gill Phillips’ Mum (now aged 93) being made to take castor oil, despite telling the midwife it would make her sick. And it did. The card asks what is common practice now that will similarly seem wrong or odd in the future: the unanimous answer given at Kingston was lithotomy.

I started to think about whether we use lithotomy more than we should and wondered what does it feel like? Although I have two daughters, they were both born by emergency Caesarean so I do not have personal experience of lithotomy although I know some of my midwifery and consultant colleagues already do. It seemed the perfect challenge. I chose to do try it for one hour as that is a quite realistic time that a woman might be in that position, sometimes it can be less, but sometimes it can be far longer.

I decided to wear a hospital gown and some running shorts as it didn’t feel quite right to do it in normal clothes. The first thing I learnt was that the hospital gown was stiff and itchy, I couldn’t get it to do up properly without assistance and when I had finally tied it I sat down to discover it felt as if I was being strangled by the neck line so had to loosen it off immediately. I adjusted the back of the bed but found it quite hard to swivel round & reach the buttons to do so. We put on a fetal heart monitor which just felt like a normal waistband, a blood pressure cuff and stuck an IV line on my arm. We also used a doll to give me a bump. I know not all women will have all these attachments but many will. During this time Tom, who was going to follow me with the challenge, commented that I looked anxious from my body language before I had even begun and it was true I felt quite apprehensive with all these people running around being aware I was about to be totally in their power as it were.

Flo 1We were finally ready for ‘legs up’! The first thing I discovered with a slight shock was that the stirrups were very cold which I hadn’t expected at all. The other observation was that the people started adjusting my legs without asking me. I thought one leg was going to fall off as the stirrup wasn’t tightly fixed enough and I was in a slightly twisted position which I asked them to adjust. Once that was done I felt reasonably comfortable and relaxed. They took my blood pressure with an automated cuff which was surprisingly painful. I decided to have a breech baby and we took a few photos.

Twenty five minutes in we decided it was time to take the bottom of the bed off which we would do for an assisted birth. I felt immediately more precariously positioned and vulnerable like I might fall off of the bed. The midwives put my legs higher and the bed much higher off the ground which was the right position for delivery without causing them back problems. This felt quite odd to be high up in the air or as one midwife put it ‘face to vagina’ so that she could see what she was doing at eye level! I definitely could not have got down from there unaided especially not when contracting and in pain. A midwife walked into the room with the door & curtain open and I realised I could see all the way down the corridor which meant everyone in the corridor could potentially see me. Obviously this was a simulation but it did emphasise to me even more the importance of closing the door & curtain behind you to maintain privacy.

A series of people then came to talk to me. Our chief executive Kate Grimes popped in for a chat and asked if I was willing for a film crew to come in to which I agreed.  By this point my bottom (sacrum) was getting pretty sore & I had neck ache. I was feeling fairly uncomfortable. My abdomen felt quite compressed and I thought if I was a woman in labour having to push it would probably make me feel quite nauseous.

I was prepared to be filmed and photographed but it was interesting that a number of people walked in and out to look without talking to me. Helen and the presenter introduced themselves to me but the camera man did not and did a series of sound checks over me and proceeded to film without even speaking to me. I am sure it was an oversight but it gave me an amazing sense of being dehumanised and re-emphasised the importance of #hellomynameis.

Flo - Helen & camera crewIn the middle of this Kate Greenstock, our MSLC co-chair arrived. Kate is a doula and came straight to me and asked if I would like a foot massage. Although I thought I was fine, as soon as she asked me I realised actually that I wasn’t fine and here was a person who wasn’t laughing or making a spectacle of me but who actually cared about how I felt. That isn’t to say all the wonderful midwives didn’t but at that moment I felt like Kate and I understood one another and that this was tough and she was ‘on my side’ as it were here to support me.

She gave me a foot massage which was immediately relaxing. I have always understood the importance of support in labour but felt that women could get that from our wonderful midwives and struggled to understand why they wanted a doula too. This experience gave me some inkling of why in some situations a midwife might be focusing on other things and a doula might be able to focus on how the woman is feeling and that alone.

My hour challenge was ticking by and for a short time after the film crew the room emptied out and I was left almost alone. I felt slightly abandoned after such a crowd before and realised if the midwives didn’t come back I was rather stranded in an undignified position. It is not unusual after an assisted delivery for many people to come in and then gradually disappear leaving me as the obstetrician to suture on my own, the midwife popping in and out to get things so in a way this behaviour seemed quite apt.

The midwives returned with a nice plastic baby so that I could have #skintoskin and then my hour was up. The end of the bed was put back in place with the bed rocking as they pushed the parts together and then finally they brought my legs down and it was over.

So what was the impact of me undertaking the lithotomy challenge?

My action has certainly got others thinking and talking. I started tweeting about it in the weeks before change day and challenged a few colleagues.  I’m greatly indebted to Professor Jim Thornton who was the first to accept and kicked off a whole week ahead of NHS Change Day.

I know of at least twelve others who have undertaken the challenge and five more who have promised to. The challenges are spread across 10 organisations so I am hoping for a ripple of conversations as a result. Even those that say ‘no’ learn something from asking themselves the question.
An obvious action as a result is for staff to think about trying to avoid lithotomy altogether. There are a multitude of options for positions and care in labour that we can employ. The Better Births initiative is an ideal example of a resource any midwife can access. Environment is also all important: birthing pools, stools, mats, balls are something tangible people can change. Antenatal education and preparation, both NHS and with our partners in the community, is also vital.

For us obstetricians there are certainly situations in which lithotomy is invaluable and necessary however this challenge has definitely made me think about the consequences of the length of time and how to keep it to a minimum as the position became much more uncomfortable after half an hour. Sometime in the pressure of work, helpful midwives get women ready for us in position before we enter the room and I had not given much thought to the impact of additional time or someone new entering the room when you are already in this position. The careful use of sheets or drapes to minimise exposure was also a topic for discussion.

In conclusion my hope with my challenge is that in each Trust conversations will happen that change practice and via networks and social media good practice will spread. I hope it will have the ‘butterfly effect’ where one small change in one place will result in large differences later.

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Baby Loss and Communication

Being in a healthcare environment – whether that be a GP’s surgery or a hospital – can be a hugely disempowering experience. You are likely to feel especially disempowered when you receive bad news – your head spinning, struggling to take in usually complex information. Then, more than ever healthcare professionals of all disciplines need to reflect that each patient is an individual, with their own experiences, values, hopes and fears.

Professionals need to be able to listen effectively, which includes reflecting back what a patient has said to check their understanding, and to make sure they understand a patient’s views.

My son Hugo was born 16 weeks prematurely because I had the life-threatening pregnancy conditions HELLP syndrome and pre-eclampsia. My beautiful boy fought so hard, but died in my arms at the age of 35 days.

Everything possible was done to save Hugo’s life. Sadly, he was too small, and too premature.

There were, however, areas of both mine and Hugo’s care that could have been better. These issues were around communication – there were occasions where stresses could have been avoided if there had been better interaction between staff, or if we had been provided with more suitable written information.

I’m proud to be the #MatExp language champion. Effective language and communication underpins so much, and even a few thoughtless words can cause enduring hurt.

A huge thank you is owed to everyone who shared this post asking parents to get in touch about their own communication experiences around baby loss. An even greater debt of gratitude is owed to those who got in touch to share their experiences – good and bad.

It was interesting that the bad experiences reflected what I suspected – they are focused around failing to reflect that each patient is an individual, with their own hopes and dreams. The incidences of good communication are heartening.

I will take the poor first, so we can end on a positive note with the good.

One mother had a medical termination because her baby was diagnosed with a condition that meant they sadly would not live. I was appalled at what the mum had to say:

We were ushered in to see a male consultant. He obviously did not have adequate time to spend with us. Everything he said felt like one more thing he had to tick off his to do list. His comment: “at this point, I have to say that I’m sorry for your loss” was the least genuine and sympathetic expression I have ever heard in my life. He then followed this by referring to our baby, OUR BABY, as the “retained product of conception” and the loss of our baby, THE LOSS, as “the event”. He sickened me!

Another mum said:

…we had decided to have an amnio. We explained this to the Community Midwife (whose first words as we walked in was ‘oh this will be an easy appointment’….how little she knew!) Her response? ‘But how would you feel if you lost it and nothing was wrong’ said in a very judgemental way. As if we had not consider the risks…..I left the appointment gobsmacked she could be so insensitive and was so upset, I sobbed all the way home.

A woman who had a miscarriage said:

He then flippantly answered my questions in a nonsensical fashion. “It would hurt no more than a period” (I found labour easier, was offered pethidine for the pain all whilst being physically sick). “I wouldn’t need to stay the night” (ummm…I did…. “I wouldn’t bleed much” (not true). And my personal favourite: “no, you don’t need any medication now. Go home and just turn up at any point on Friday and we’ll deal with you.” (15 minutes later and in a taxi on our way home I noticed numerous missed calls. As we thought, I had needed to take the first of my tablets and was asked to return to the hospital as soon as possible.)

The two examples around my own experience include when discussing Hugo’s end of life, in my distress I cried how guilty I felt. The consultant said:

All mothers feel guilty.

That may be so – no mother of a premature baby, or a baby that dies for whatever reason is at fault. Knowing that does not diminish our sense of guilt, and that comment felt very dismissive. I wanted to talk about why I felt guilty, and be listened to.

The other example relates to a midwife from my local hospital phoning me the day after Hugo died. In a cheerful voice, she asked how I was. I replied that Hugo had died the previous evening. It was evident she had not heard me, because continuing in that cheerful voice she said “Oh ok, I understand you are at home now, would you like a visit?” Even if Hugo had not died, the tone and content of the call was inappropriate. Hugo would have been 29 weeks at that stage and while the unit that cared for him is excellent, there is no way he would have been home by that stage. It seemed to be a failure of checking the notes properly.

These are all examples of health care staff using jargon, and impersonal medical terminology. I am sure (and hope) these staff did not intend to be impersonal or insensitive. I am sure (and hope) these staff simply failed to put themselves in these women’s shoes, to consider how they were feeling at such a sad and difficult time, and to offer empathy. In the example of the midwife who phoned me, she needed to have used a different tone to the one she would commonly use with the happy events of mums at home with their healthy babies.

Effective communication is something I am passionate about, for the benefit of patients – I have worked in the profession within the NHS for several years.

Thankfully, we do have positive examples of communication to talk about.

The woman who had a miscarriage gave this emotional account:

The ward matron ushered us into her office and apologised profusely. She gave me my tablet and then offered to answer honestly any questions we had. We went over everything again but this time we received compassionate and truthful answers. “Yes, it would hurt lots but you will be offered pain relief”. “You will need to stay the night”. “It will be hard but we will be here to help you get through it”.

In the digital age, most of us will take to Google to explore our diagnosis and prognosis to find out more. Of course, while the internet has many useful, trustworthy sites, there are many that are complete rubbish (this is true of every condition, not just baby loss).

As one mum said about her baby’s diagnosis

Probably the worst thing I did was google the condition when I got home.

I found the same about HELLP syndrome – it is so rare, there is little information about it, and much of what I read was terrifying – not helpful to my emotional recovery.

Patients need to be guided towards trustworthy sites. I was heartened to read that as the result of the involvement of a bereaved mum, one hospital’s website has “information specifically about fetal abnormalities as well as details of the team of people who will be looking after them. When they leave the hospital after diagnosis they are given the website address and the number of a counsellor so they can look at it when the shock has worn off”.  The website also has some links to recommended forums.

Happily, I do have examples of better communication of my own to share: consultants (both obstetric and neonatal) listening to me, and patiently answering my questions without patronising being an important one. Vitally, I have found the majority willing to listen to and take on board my feedback, and seek to reflect on their practice and make changes were appropriate.

That is heartening progress, for the benefit of other women during the heartbreaking time of losing a precious baby.

Language matters, always.

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