Maternity Experience

Informed Choice

Time to Act for Continuity of Care

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

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

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

Continuity

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

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

The suggested actions from the discussion that followed were:

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

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

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

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

Campaign for Choice
Campaign for Choice

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

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

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

 

Helen Calvert

@heartmummy

2015

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#Matexp – Taking action on improving Tongue Tie services.

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

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

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

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

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

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

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

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

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

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

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

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

So what actions were suggested?

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

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

So what actions came forward regarding support?

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

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

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

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

Emma Jane Sasaru

@ESasaruNHS

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Time to Act on Infant Feeding

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

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

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

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

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

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

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

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

2015-07-12

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Remember this which Elizabeth Pantley shared on her Facebook page:

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

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

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

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

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

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

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

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

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

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

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

Lucy, Dorset

Woman-asleep-with-books-002

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

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

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

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

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

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

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

  7. Are we really under pressure

  8. The part that the formula companies have to play 

  9. Are we being unfair to formula feeding mums?  

  10. Supporting women to breastfeed when they need medications 

 

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

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

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

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

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

Reap benefits

Helen Calvert

@heartmummy

2015

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Time to Act on Breastfeeding and Medications

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

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

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

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

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

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

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

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

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

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

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

BfN meds

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

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

BfN

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

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

LactMed

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

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

2015.

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Emma Jane Sasaru

@ESasaruNHS

 

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

June is not going to be dull…! For me personally, this is a big week – I am looking forward to speaking at the NHS Confederation Annual Conference on Wednesday. The session I am involved in, chaired by Dr. Mark Newbold, is about urgent care of older people. The emphasis of my contribution is around prevention, holistic approaches and joined-up systems, ensuring that life is not over-medicalised – the simple things that make life worth living.
https://twitter.com/piponthecommons/status/603235181802221568
https://twitter.com/NHSConfed_RobW/status/603643530553204736
Mum, known on Twitter as @Gills_Mum, is extremely interested in my talk and threatening to write a blog of her own…

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

FlamingJuneToday starts the month with a bang.

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

For anyone who has been twiddling their thumbs and wondering what to do with themselves since the end of the #MatExp alphabet (yes, we know who you are!), you will be delighted to know that June is a month of action!
https://twitter.com/ClareHelm2/status/605069325662351361
https://twitter.com/leighakendall/status/604947389938606080
https://twitter.com/QuashieMichelle/status/605070391531466752
https://twitter.com/hallmum5/status/605071207201972224

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

https://twitter.com/helenbevan/status/605290170477367296

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

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

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

OUR GUEST BLOG FOR SHEENA BYROM IS REPRODUCED BELOW…

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

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

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

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

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

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

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

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

Queen’s Hospital session in action

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

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

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

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

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

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

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

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

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

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

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

Gill Phillips and Florence Wilcock

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

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My HELLP Syndrome Experience (Part 1)

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

“Heartburn,” I thought.

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

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

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

I was very emotional. Normal pregnancy hormones.

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

This went on for six days. Getting progressively worse.

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

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

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

How wrong I was.

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

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

It is early, far too early.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am completely, blissfully, away with the fairies.

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

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

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

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

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

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

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

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

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

I do not have time to be bored.

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

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

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

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

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

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

Hugo on the day he was born

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

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

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

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

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

In intensive care

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

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

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

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

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

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

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

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

Some of my beautiful bruises.

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

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

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

Cheeky Hugo, kicking away and grabbing his wires.

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

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

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

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

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

A cuddle with Mummy

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

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

Hugo, Martin and me

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

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

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

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

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

HELLP. What a crappy acronym.

There is nothing helpful about it.

It is a difficult thing to get your head around.

Proud Mummy alert: what a beautiful boy!

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Don’t call me high risk! #MyPositivePregnancy

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

Don’t call me high risk.

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

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

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

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

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

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

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

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

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

 

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What is a ‘Positive’ birth?

The experience of birth will stay with a woman her whole life time


Ask any women her birth story and she will recount it with easy, there is no experience that can compare to bringing a tiny baby into the arms of a loving family. The effects of a birth experience will stay with a woman her whole life , it can effect her subsequent births, her health, her relationships, sometimes for the rest of her life.

So what is a positive birth? What can we do to help women have a positive birth?

As with all things in life choice is very important and this is no different when it comes to birth. Choice is so important for women and should be the foundation of any birth. Women should be aware of their choices and what is available for them. Is there a midwife led unit she can use? Will she be able to have a home birth? What about free birthing? Can she elect to have a cesarean section? These are all things a woman may wish to consider when choosing how to have her baby. Consider how much thought may go into the purchase of a pram. I know couples that have spent months researching and looking at all the different prams available. Shouldn’t we be helping and making sure that just as much thought and research is going into the choices for birth?

What’s also important is accurate evidence based information that will enable a women to make an informed choice. How far from a hospital is she if she chooses a home birth? What are the risks of a cesarean section and the results for future pregnancies? What actually is free birthing? Why has it been recommended to have the baby in a hospital? By good communication and giving accurate information women can be helped to make a informed choice that is right for them and their baby.

So what makes a birth positive?

Think about a day or an event that you enjoyed lately that you view as positive. What made it positive? Maybe it was who was there, or the place you went or what you did. Does a positive event mean that it always goes to plan with everything prefect? No, sometimes even when things don’t go to plan they are still positive. Will everyone have the same view of what is positive and does everyone view the same experiences as positive? Chances are what you find positive someone else wont. So when it comes to birth it is very individual. Every woman has her own view of what a positive birth is.

Picture for a moment a woman, she was desperately looking forward to the birth of her baby, however something went wrong and her beautiful baby was born sleeping. Now she is pregnant again, she is racked with fear, anxiety fills every day as she worries about the safety of her baby. She desires control, needs reassurance of medical staff and the technology they process. For this woman her choice for her birth is a cesarean, her baby delivered, well and alive in a controlled way, at her choosing. As her baby is lifted from her body and she hears the cry of her newborn baby relief, joy and hope fills her heart. This is her positive birth.

Now picture a woman whose previous birth was traumatic an emergency cesarean with much medical interventions. Her recovery was long and feeding was difficult. But this time she wishes to stay at home as long as she can. She wants to trust her body to birth her baby and believe that she can safely bring her little one into the world. She wants calmness and solitude and as little intervention as possible. So she hires a doula that supports her at home till the journey to hospital.  Once there in a room thats dark and quiet, with time and the support of her partner she births her baby on all fours into her own hands and she feels at peace. This is her positive birth.

Then there’s the woman that is terrified of birth, of hospitals and doctors. Abused as a child she has trouble trusting people. Yet tears are streaming down her face as she holds her newborn baby, with her is a midwife she trusts and she feels safe in the beautiful room of her local midwife lead unit. Around her are her things that bring her comfort and peace. Her favourite song is playing as the warm waters of birth pool lap around her soothing her tired body. This is her positive birth.

A positive birth will be different for every woman, what matters is what birth means to her. It’s important that a woman’s choice is supported and her wishes understood and as far as possible she is able to have the birth she wishes.

Of course sometimes things don’t go as planned and the birth a woman wants and has planned may not happen. However we can still make sure that it is positive. How?

Firstly communication. Always should a woman know what is happening and why. Explaining what is happening gives the woman confidence and builds trust with those who are caring for her. Understanding the things happening too her will easy anxiety and lessen fear. Don’t forget communication means listening too!

Secondly choice. No matter what is happening the woman still should be given choices. Allowing a woman to have choice even in difficult situations means we give control back to her and her birth.

Thirdly, dignity, respect and compassion feed positivity. Always should a woman feel that she has been treated with dignity by everyone around her. Small things like asking before doing checks and saying please and thank you go a long way. A woman should never be judged or labeled. Respect should be shown her and her choices and her concerns and fears. It maybe that her choices are difficult for us to understand but still they are hers and we must respect them. Never should a woman be spoken to unkindly or her needs ignored.

What about Compassion?

Compassion is the emotion that one feels in response to the suffering of others that motivates a desire to help. Compassion is really the act of going out of your way to help physical, spiritual, or emotional hurts or pains of another’

Compassion should move those who support a woman in birth to go out of their way to help her.  She is someone’s wife, sister, daughter, she has her own story, feelings, needs, fears, concerns. Care should be individual for each woman taking into account her personality, her background, her current situation. This may sound like an impossible task but is it? Ask yourself if it was you what would you want? More importantly as we said at the outset if the way a woman births stays with her her whole life time then we must do everything we can to make her birth positive. so that she looks back on it and remembers that those around her did everything they could to make her feel loved. images (15)

Emma Jane Sasaru

@ESasaruNHS

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The many faces of birth

Natural-Childbirth-tips-for-Pregnant-Women

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

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

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

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

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

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

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

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

I feel like a failure

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

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

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

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

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

No one wants anything to go wrong

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

Which leads onto another face of birth.

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

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

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

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

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

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

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

Emma Jane Sasaru

@ESasaruNHS

 

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