Maternity Experience

Year: 2016

Top Ten Things NOT To Say To A Preemie Parent

Language is a huge theme for #MatExp, and one of our six Heart Values.  Francesca Tucker kindly agreed to write this post for us looking at people’s inadvertent language trip ups when talking to parents of premature babies.  Francesca is a part-time working Mum, who lives in the New Forest with her husband Murray, baby Harry and their three cats. Harry was born at 28 weeks, whilst his parents were on holiday in France. He’s now a happy, healthy 18 month old!

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As I sit and write this now, I can do it with a smile on my face.  But 18 months ago, if you’d said any of the following “Top 10” to me, my reaction would have been vastly different.  Depending on how my day had gone / how many Brady’s baby Harry had decided to scare us with / how much milk I’d managed to express etc., you may have had a response of tears, anger or stony silence. Because, quite frankly, there are just some things you don’t say to the parent of a premature baby!

Speaking on behalf of “The Premature Club” which no-one wants membership to, we understand that it’s difficult to know what to say.  The pure joy of the newborn news is tinged by the elephant in the room- “what if they don’t make it”?  We know that as our family, friends and loved ones you are thinking of us (we do appreciate it!) and you want to say the right thing, but we’re not expecting you to – there are no magic words that will break the spell and make everything better.  Just being there for us, letting us cry, shout, or just sit in silence helps.  And that silence can be golden – far better than the following “Top 10 Things not to say to a Preemie Parent”! (As compiled by myself and another Prem-Mum whilst we were in neonatal, both with boobs out, trying to get our babies to practice their breastfeeding!)…..

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1. You’re lucky!  You got to meet your baby early!

Yep, at this time, we’re feeling really lucky-said no-one EVER!  Last time I checked, there was no calendar hung in my uterus, so I’m pretty sure the baby had no concept of ETAs.

2. Your baby was just keen to meet you.

I was creating quite a nice little home in my womb which I was quite proud of- food on demand, good thermostat, nice sounds, and a lovely landlady who was providing everything.  I think my baby was quite happy to stay put for a while longer, and wasn’t that eager to meet me. He/she had heard me chatting enough already, so I’m pretty sure the baby knew me already!

3. Oooh, having such a small baby must have made labour easy!

Putting aside the obvious fact that childbirth is painful, what a lot of people forget is that Prems often arrive in emergency situations. This may involve tearing, C-sections, episiotomies as well as the wider delivery tool-kit of forceps, ventouse etc.  This is NOT easy! (And don’t even get me started on the emotional aspects of labour)

4. Lucky you!  You’ve got less baby weight to lose!

Why is it that when someone has a baby, everyone feels it’s acceptable to start commenting on your weight?!  It’s no-one else’s business that you weigh, it’s the last thing on your mind whilst listening to the endless beeping in neonatal. And chances are that with the stress of the situation, you’ll be losing weight anyway

5. Well, at least with the baby in hospital, you get a good night’s sleep!

Erm, no!!  At night, most Prem parents are trying to cram in a day’s work of general life into a couple of hours (unfortunately bills still need to be paid, housework done etc.), prepare supplies that need to go to the hospital the next day, express milk through the night to keep supply up, and are generally stressing.  A good night sleep is not anticipated for months!

6. With those nurses around, you’re getting far more support than most Mums.

Yes, the nurses are a fantastic support (they become your extended family!), and it’s a hard job to do, but they are by no means doing it single-handedly.  They encourage the parents to get involved wherever and whenever possible. I can’t think of many parents that have a baby just to hand them over to someone else to look after – you are the parents, and you want the job!  But also remember, the medical team is desperately needed- many Prems need a lot of medical support…surely no-one can begrudge a baby that?!

7. But tiny babies are so cute!

True, but would you swap your baby being dangerously small for “cute”?  I thought not.  And trying to find the “adorably small” premature outfits is tricky…and very expensive!

8. When will the baby be coming home?

We don’t know, and if we do, we often won’t want to say.  It is upsetting thinking you’re about to take your baby home, only for your child to take a downturn and your excitement turns to disappointment and fear.  Sometimes it’s easier for the parents to say nothing, rather than having to explain why the baby is remaining in hospital.  And when we finally take our little family home, we may well want a day or two to take it all in-it’s a long journey to get home!

9. How are you doing?

Mmmm, a tricky one.  Some days will be good, some days will be bad.  With 1001 thoughts and emotions running through a Prem parents head, it’ll probably take too long for them to give an honest answer- default option is option to be “Okay, thanks. You?”  A better thing to say if the offering of help for a specific thing e.g. “Would you like me to bring you a meal around, so you don’t need to cook?”

10 Will he/she be okay?

A very personal question, and again one that is completely dependent on individual circumstances.  Define “okay”?  The baby may have long-term health issues, but with the prospect of excellent quality of life, the outlook is overall positive.  Or the baby may be going through a serious complication, where the outcome is an unknown. No-one wants to answer “No, he/she is not okay”, as it’s upsetting for all concerned.  I personally think such questions are best avoided, and simply substituted by as much love and support as you can provide.

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These are some of the favourite options I had for you from our early days of the neonatal journey.  Now, a favourite is “Isn’t he walking yet?” – nope! But bear in mind, his peers have a 3month developmental head-start!  Maybe I should do a Top 10 comments for the “Advancing Prem Baby”?!……….

But to anyone reading this, currently supporting a neonatal family – thank you.  Even though the family may not show it (they are probably too overwhelmed presently), having you present in their lives is helping them more than you’ll know.  And if you’re the parents of the little baby/babies lying in hospital- I welcome you to “The Premature Club”- it’s tough, and at times you may feel so wholly overwhelmed it can engulf you.  But remember, you are doing a great job and making the best of your situation. I send my love and support to you.

By Rosiepics
Francesca and Harry by Rosiepics

Francesca Tucker

2016

For more “What Not To Say” and other Preemie Top Tens please visit The Smallest Things website.

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WhoseShoes Confirmed That My Shoes Have Climbed A Mountain

This post is from Michelle Quashie, and originally appeared on her blog site Strong Since Birth.  Our thanks to Michelle for agreeing for it to be reposted here.

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The day had finally arrived! After contributing to #MatExp and interacting with many conversations surrounding ‘WhoseShoes’ throughout the year, I was finally going to experience the magic in real life.

Laura, the chair of our MSLC has written a fantastic post that captures the excitement of the day perfectly, you can read it here: When WhoseShoes Came To The PRUH

I was not disappointed, the day was everything I had dreamed of,  but for me it was so much more.

I was asked to open the event by sharing my Maternity Experience. I have spoke at several maternity training events in the past but my audience has always been Midwives. I was aware that this was a multi discipline training event and it was to be the first time I would share my story in such detail with Obstetricians and everyone else involved in Maternity. The thought made me feel anxious but I knew how important this opportunity was.

I had planned to stay in control and not let the emotions attached to my experience be displayed in the form of tears. It was so important to me to remain composed and in control.

My heart pounded through the showing of the MatExp film, this film moves me every time. It is so powerful and very thought provoking. Sadly I can resonate with many of the situations displayed in the film. I knew I was about to be discussing some of those memories any minute with all those surrounding me.

My name was called and I made my way to the front with my heart pounding. I decided to be honest and share how I was feeling with the room.

‘Please bare with me, I am feeling very nervous. I’m sure once I start talking I will warm up and I will be fine!’

Automatically I felt more relaxed and felt more able to share my story without the anxiety overruling my thoughts.

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It’s amazing how every time I share my experience it comes out slightly different, or I find myself saying things that I hadn’t thought of before? I had missed a couple of important bits out but neither the less I was very happy with the way I had presented and gauging by the feeling of emotion in the room I had touched the hearts of nearly everyone around me. For the first time I was able to keep my tears to myself even though I had noted that tears were shed by many in response. The room fell silent but the atmosphere spoke volumes.

I wasn’t aware of the tweets that were being circulated on social media but looking at them them later along with the emails I had received It confirmed that my talk was a positive part of the day.

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“Also a massive well done to Michelle for her heartfelt and emotional story, I could see it touched many people as there were certainly a few tears in the room. That took huge courage to stand there in front of so many people and share such a personal experience and to tell it so well. Huge WELL DONE Michelle.”

We began to play the the game and interesting discussions were had in response to the thought provoking questions that are key to the WhoseShoes success.

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Some of the discussions that stick in my mind were:

  1. A woman wanted a home birth but her husband wasn’t convinced. We had discussed that there wasn’t enough support or information given during antenatal care to ensure that the couple felt safe,supported and empowered to fulfil the woman’s birth choice.
  2. Consultant Obstetricians are normally addressed by other members of their team using their title i.e., Sir, Mr, Mrs or Miss as a mark of respect. I may be wrong but it feels hierarchical, unlike the power slogan and barrier breaker behind WhoseShoes and #MatExp ‘No Hierarchy, just ordinary people’.
  3. It was also discussed that consultants were on site until 9 pm, after that they are on call for emergency situations only. Now I understand why during my appointment to discuss my VBAC, the registrar said ‘ I mean, we don’t know when you will go into labour or who will be on duty should you rupture’. I now understand that my birth choices were  influenced by staffing levels at the hospital.
  4. Other key themes were Empathy, Language, supporting and facilitating informed decision making and just how important it was for everyone to be cared for individually based on their individual situation and needs.
  5. Midwives are able to have time to build a relationship with women whereas doctors are often called for the emergency situation and do their best to resolve the medical issue as it arises. This can sometimes make it hard for them to be able to connect with the woman that they are caring for and are not always able to fully appreciate the long lasting effects the experience can have on a woman.

The day was coming to an end and Anna gave us fabulous evaluation of our morning using the comments that came from the discussion at each table. It was fabulous to visualise the discussion using the graphic that Anna had been working on through out the morning.

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We each made an individual pledges. Here is my pledge:

“To provide a platform for women to share their Maternity experience.  I would like to ensure that women’s voices are heard as part of training and development.”

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I am currently planning a conference called ‘Women’s Voices’. More details will be available soon.

As the morning came to an end and people were leaving someone tapped me on my shoulder. I turned round and my tummy flipped. The face before me took me straight to a place of feeling vulnerable, feeling panicky.

‘Michelle it was me wasn’t it?’

Stood before me was the registrar that I had my consultation for my vba2c with. Unbeknown to my self and the organisers we had shared the morning. I had shared an experience that changed my life but had also been a time that left me feeling scared, vulnerable, isolated and questioning my mental health. The person that was responsible for those feelings was standing here in front of me, for a moment the feelings came flooding back, I battled to keep them contained.

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She apologised for the way she had cared for me. She admitted that she had been wrong and has since ensured that she was fully aware of her professional guidance. She was now fully supportive of  women’s choice regarding their birth and ensured me that since having to write a statement in response to my complaint, she is fully aware of the impact of the care she provides a woman.

She actually thanked me for highlighting the error of her ways promising me it had changed her attitudes. I could see that she was overwhelmed with emotion and had spoke to me honestly. She asked if she could hug me and we both held each other for comfort.

I told her that I admired her for taking the time to come a talk to me and for apologising. I also explained that I was aware that she was not entirely to blame for the care I had received and I now understood that her response to me wanting a vaginal birth after two caesareans was due to the cultural belief of the trust she worked in.

It was clear that my birth wishes would not be supported and neither would anyone wanting to support me at that time. I know this because many attempts were made to provide me with the support I needed and no one stepped out of their comfort zone to provide me with the support I needed with regards me birth choices. As a result I had no choice but to transfer my care.

She empathised and promised me that as a result of my experience things were changing.

We said our goodbyes and I was trying very hard to contain my emotion that the meeting had evoked.

A consultant midwife that has walked by my side through this maternity experience and others and who has been a pillar of support to me came to see me. ‘Are you OK Michelle?’

The flood gates open and I broke down. I couldn’t talk at that moment. I was just overwhelmed with emotion. I couldn’t make sense of it at the time but now I think I can.

That meeting with the registrar brought some closure. I admire her ability to acknowledge the error of her ways.

The meeting took me back and reminded me of the scared women I once was sitting in her office, trying to persuade her that I could give birth, pleading with them to allow me. Feeling so horrible when it was highlighted that I had never given birth and they wasn’t sure if I could. I was subjected to a number of negative comments that effected my mental well being and left me questioning my sanity. Comments that left my family feeling unable to support my decisions in fear of my safety. it was a meeting that left me feeling isolated.

Here I sat after coming full circle with the same women but this time I was a different woman. I am a now a woman who has had the most amazing journey and have achieved some incredible things;

I gave birth, not only did I give birth but I bloody rocked that labour ward!

I came back and I told the story, I sang it from the rooftops!

I learnt to believe in me and my abilities.

I joined their MSLC and contributed to so many fantastic improvements within the Maternity service.

I have spoke at training events within maternity with an aim to improve maternity care for women.

I have written and had my views published here and in The Practising Midwife .

I have contributed to #MatExp campaign and connected with some fantastic people as a result.

I have met, received support and been inspired by many fantastic people. too many to mention.

The realisation that my shoes have climbed a mountain has happened!

I received the following email from a Consultant Obstetrician following the Whose Shoes event. It confirmed that this journey has been worth every little step:

“Dear Michelle,

I just wanted to reiterate how touched I was by your story and how impressed I was by the way you delivered it. You will be responsible for improving the practise of every obstetrician in that room today which in the end will improve the care of tens of thousands of women.

If anyone is amazing it is you!”

This is one of many mountains.

I hope to be climbing a mountain near you soon.

 

Michelle Quashie

2016

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When WhoseShoes came to the PRUH

Whose Shoes® came to Kings College Hospital this week and wow did we step up to the challenge!

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Having observed the Guys and St. Thomas’s event in the summer of 2015, I knew we were in for a treat. I hoped and prayed that our event would generate a similar level of commitment that was felt at Guys, and I was not disappointed.

50 delegates, representing midwives, maternity support workers, doctors, commissioners, service users, receptionists, porters, health visitors and many other areas of maternity, streamed into the Education Centre promptly at 9:30. The day was introduced by Maxine Spencer, director of midwifery, who spoke about the day being a level playing field and that everyone was there as a mother, a wife, a sister, a daughter (or a father or son for the men in the room), irrespective of their profession.

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Having watched the “In their Shoes” MatExp DVD, during which you could have heard a pin drop, it was then the turn of service user Michelle Quashie to tell us her VBA2C experience. Again, everyone listened with respect and focus and there were tears from a few as she retold her powerful and inspirational story.

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After everyone had composed themselves, it was time for the game to begin. Conversations started off fairly hesitantly, but people warmed up and pretty soon it was obvious how powerful this day would be.

On our table discussions ranged from noise on the postnatal wards, to caring for staff and teamwork, how to support women’s feeding choices and the power of language. Everyone spoke in a respectful manner and was very honest and open. Conversations just flowed and, as a facilitator, it was wonderful to see how professionals often spoke from the heart as service users. Proof that birth matters to everyone.

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The wonderful Anna Geyer from New Possibilities weaved her magic on the plethora of post-it notes being generated from the discussions and as usual created the most beautiful graphic.

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Tweeting was fast and furious during the day, to the point where I thought my Twitter feed was going to explode! Here are just a few of the hundreds of tweets:

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Eventually, after a couple of hours, the discussions were brought to a close and Anna gave us her evaluation of the day, drawing out some of the points that we had raised.

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As chair of Bromley MSLC, I was delighted to see the weight attached to having a strong, powerful MSLC as a voice for service users and professionals alike.

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Then it was time for the pledges. Each individual was invited to pledge one thing that they would do differently as a result of attending the morning. Spontaneously, everyone clapped and cheered as one pledge from each table was read out. I haven’t had time to go through them all yet, but here are a handful that stood out:

I will try to make every birth special (in theatre especially)”

I will not use the following words: allow, only and let”

To try and make the ward round more personal, friendly and positive and a respectful experience for the woman and her family”

To always ask how the new father is as well as the new mother”

I will facilitate a “good news” newsletter and encourage all staff to submit thank yous and nominate staff for good support”

I will ensure that I always remember to update the woman and relatives on what is going on”

I will make sure that every woman feels had the attention and care she hoped for”

I will always say hello and congratulate all new parents on the ward”

I will continue to facilitate named midwives (and ensure that) a woman sees her named midwife at least 4 times during her pregnancy.”

To provide a platform for women to share their maternity experiences”

What now?

The Bromley MSLC has gathered together all these pledges, which will form our work plan for the next 12 months or so. We intend to monitor and check that they are being implemented. Amazingly, by the time I’d returned home and fired up my computer, one staff member had already emailed her colleagues to initiate the first “good news” newsletter. THAT is MatExp in action!!!

The other email in my inbox when I returned was from a service user who had attended the day. She asked me to share this with other members of the MSLC. She said:

I just wanted to express my thanks and congratulations on your amazing achievement on getting today’s ‘Whose shoes’ event to actually happen and to everyone else who was involved in organising this outstanding event.

What an absolutely amazing experience it was and so refreshing to see such a mix of service users and professionals all come together, to share knowledge and stories and all with the same goal, of making a difference to our maternity services.

I thoroughly enjoyed the morning and could have easily carried on for the rest of the day!!!

As discussed today on my table, people are very quick to complain, but never quick to praise so I thought I would come home and express my feelings and give my praise. 

So thank you and I will see lots of you at the MSLC meeting next week. Really looking forward to seeing what the year ahead holds now we have our pledges to work with!!

I was fairly certain we were in for a special day, but I was overjoyed to feel the tangible buzz and energy created in the room. It was a privilege to witness how something so simple; getting professionals and parents together to talk about improving maternity services in a compassionate, respectful manner, can have such an impact. From the number of comments I’ve had flood into my inbox in the last 24 hours, I think its safe to say that everyone came away feeling fired up and committed to making local maternity services the best they can possibly be. I know it renewed my enthusiasm to do just that.

Oh, and one final thing. I think we raised the stakes of the #MatExp #bakeoff challenge!

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Laura James

Chair, Bromley MSLC

2016

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2016 Starts Here!

Personally I have had a bit of a Christmas and New Year break, but of course #MatExp never sleeps!  There have been plenty of blogs, new ideas, events planned and meet ups occurring all over the festive period.  We have had new people join the Facebook group, new ideas suggested for #MatExpHour and lots of us are speaking at events around the country in the coming weeks and months.

It seems five minutes since the fantastic #MatExpAdvent initiative came to an end, but here we are on the eleventh day of 2016 and I need to dive back in as otherwise I’ll be left behind!  This wonderful round up from Gill Phillips inspired me this morning to get back on the crazy horse…..

 

Our last #MatExpHour before Christmas, led by the wonderful 23weeksocks, was on the topic of Taking #MatExp Into 2016.  There were some excellent suggestions for actions and initiatives, so let’s take a look and then get cracking!  What would you like to do?

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The NCT has developed a new practical guide to running an Maternity Services Liaison Committee (MSLC), “From Good Practice to Trouble Shooting”.  MSLCs are a big part of #MatExp, and there are some exciting WhoseShoes #MatExp MSLC events coming up very soon!

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Kings MSLC

Are you already a member of an MSLC?  What has your group got planned for this year?  Is there an MSLC in your area that you can join? Definitely a lot going on around the country – let us know how #MatExp can support your MSLC, joining hands around the country!

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Groups

It was also suggested that #MatExp could work more closely with the fantastic 1001 Critical Days campaign.

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Are you involved with this project?  How can #MatExp best support the campaign, and vice versa?  Do you have some fresh ideas about the conception to age 2 period?  We have many Health Visitors involved in #MatExp and their input here will be invaluable.

The next suggestion was harnessing the power of the next generation of midwives via the country’s Midwifery Societies.  Are you a member of a MidSoc?  How can you collaborate with #MatExp?  Could you host a WhoseShoes event?  Do you have events coming up where #MatExp could be represented?  What is on your agenda for 2016?

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My aim for 2016 is to try to take #MatExp to those not on social media.  How do we engage with healthcare professionals (and parents) who are not on Twitter and Facebook?  Looks like we will have to resort to good old fashioned pen and paper!  Or at least keyboard and printer.  Who in your trust would you like to tell about #MatExp?  Get in touch and help me to spread the message further!

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The big thing we are all waiting for is the report from the National Maternity Review.  At the Birth Tank 2 event Baroness Cumberlege had hoped that it would be published on 31 December 2015, but unfortunately it is not yet available.  Once it is here we can get stuck in with implementing recommendations at a local level.

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And what else have people suggested?  #MatExp is about all voices, everyone getting stuck in doing what they can, when they can, where they can.  A few more ideas to get you inspired:

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Anyone wanting to order #MatExp stickers and other resources can do so here.

What’s your plan?  What is happening in your area?  What needs to be done?  What can be built upon?   Who needs to be involved?  What small things can you do?  What BIG things can you do?  Whatever you are up to remember to tell us on Twitter at hashtag #MatExp, join in on Facebook, comment on this blog post, send us a message by carrier pigeon, write it on the sky…..  The #MatExp train is steaming down the track.  All aboard for 2016!

 

Helen Calvert

@heartmummy

2016

 

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