Gratitude

I am reminded again of Mark Harris‘ assertion that we are meaning making beings.  Leigh Kendall posted yesterday in advance of her son Hugo’s second birthday, asking us what we are grateful for?  Hugo was born on 20 February 2014 and lived for just 35 days.  Leigh has been doing incredible work raising awareness of HELLP syndrome, premature babies, parental bereavement and more under the hashtag #HugosLegacy.  She joined the #MatExp team as “Language” champion for NHS Change Day in 2015.

Day 153

David on ICU following his Glenn procedure

What striking little parallels.  On 19 February 2014 my youngest son David had his second open heart surgery at Alder Hey Children’s Hospital, so we were in Alder Hey at the same time as Leigh was giving birth to and meeting Hugo.  David turned 5 months old on the day that Hugo was born.  My experiences in Alder Hey at the time of that second op, and the experiences of others on the ward, led me to start my Hospital Breastfeeding campaign (#hospitalbreastfeeding) to highlight the need for improved breastfeeding support on children’s wards.  Discussing these issues brought me onto Twitter and led me to Florence Wilcock, Gill Phillips and the #MatExp campaign.  I joined the team as one of two breastfeeding champions for NHS Change Day in 2015.

Leigh and I have worked together on #MatExp for some time now and I am in awe of her strength and the raw honesty of how she takes us all into her world via her blog and public speaking.  Yet I had not fully appreciated the crossover of our experiences until I read her post yesterday.  I was reading it whilst taking a break from writing my presentation on Hospital Breastfeeding for a BfN Study Day, and had been writing out what led me to start my campaign.  It was so striking to realise that it all started at the same time as #HugosLegacy.

So Leigh is asking for what am I grateful?  Well firstly I am grateful that this is the story that I am able to tell.  David came home to us after that second operation, and is now a thriving 2 1/2 year old.  Hugo should be celebrating his second birthday tomorrow with his Mummy and Daddy, but he is not.  All parents feel a sense of gratitude for their children, I feel very privileged to be Mummy to my eldest son Edward, but when your child has stared death in the face that gratitude is all the more present.  Every milestone for David is a moment of reflection.  I know that Leigh wishes for all of us to appreciate every second we have with our children, however challenging that can sometimes be, and I truly truly am.

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Chilly Saturday in St James’ Park.  All together.

I have much about which to be grateful, I live a life of Western privilege, good health, good fortune, love and happiness.  I am mindful of that every day.  Most of the people I have met through #MatExp share some of that good fortune with me, but many have been through unbearable heartache.  Not only do their stories throw my own good fortune into relief, but by telling those stories these incredible women help others to find healing, peace and a voice for their own struggles.  Catherine MacLennan, Founder of the Pinks N Blues CIC, Emma Jane Sasaru, founder of Unfold Your Wings and the Perinatal Mental Health Network, Susanne Remic of Ghostwritermummy – three examples from a much bigger group of people who are using their voice to improve maternity experiences for others, so that future families have more about which to be grateful, and less heartache to remember and relive.

C S Lewis

One of the #MatExp Focus topics for this week is Why Your Voice Matters.  It matters because it is important to say thank you for that for which you are grateful.  Rachel Gardner’s wonderful Showing Thanks page is the perfect place for that.  It matters because it is important to tell your story so that others realise they are not alone in their struggles.  It matters because speaking up can help you to make connections that support you in your experiences, and that help you to make the changes you desperately want to see.  And it matters because what others have experienced helps us to find our own gratitude for the things we, so fortunately, have not had to endure.

Thank you Leigh.  And Happy Birthday to Hugo.  H.xx

#hospitalbreastfeeding When Mum Goes Into Hospital

So if like me you are steeped in the world of infant feeding you will know that there has been more discussion than usual on support and evidence in the last week or so.  The Lancet series on breastfeeding sparked a series of opinion pieces, media stories and this fantastic Open Letter signed by a long list of key organisations.  I have thrown my own pen’orth into the ring via a blog post about the strength we need to fight for infant health.  Lots of momentum and a desire for change.

BF Med

As you can imagine, I have been looking at all of this from the perspective of my Hospital Breastfeeding campaign.  In discussing my blog post on the Association of Breastfeeding Mothers’ Facebook page, I commented that we don’t need to pressurise mothers into breastfeeding in order to improve the breastfeeding rates in the UK.  We simply need to adequately support those who already want to feed their babies that way!  Nowhere is this more true than on paediatric wards and in children’s hospitals.  If we can’t provide adequate support for mothers who want to breastfeed their sick children, when these children are some of the ones who need breastmilk the most, then what hope is there of families being supported when they are away from a healthcare setting?

Yet this isn’t my focus for today.  Today I want to talk about what happens when a breastfeeding mother has to go into hospital for treatment herself.

The support available for breastfeeding mums who are inpatients on adult wards was never meant to be the focus of my campaign.  But since supporting Gina last year (read the full story here) I have been contacted by other mothers who have struggled to maintain breastfeeding due to needing to be inpatients themselves.  The circumstances they have faced and my desire to address the situation have led me to add a new member to the Hospital Breastfeeding team.  Breastfeeding Peer Supporter Asha Crocker has kindly agreed to join the campaign in order to focus on the issue of support on adult wards.  I will introduce Asha to you fully at the end of this post.

Looking at the stories that we have heard from women so far, Asha has identified the main areas of concern when a mother tries to maintain breastfeeding throughout her hospital stay.  These are as follows:

Medications compatible with Breastfeeding

BfN meds

Luisa Lyons has written an excellent blog post for the #MatExp campaign on what needs to be done with regards to medications and breastfeeding.  Even maternity staff and GPs are often unaware of the service offered by the Breastfeeding Network’s Drugs in Breastmilk service, so it is not surprising that clinicians on adult wards are not familiar with Wendy Jones and her fantastic work.  This does, however, urgently need to change.  There are other good resources as well – Lactmed for example.  What needs to be understood is that the standard NHS guidance for medications and breastfeeding is not as up to date or as useful as these resources.  This is a key message.  If you are treating a lactating woman you need to be using the right resources when considering her medications.

Sadly, the current situation is very variable.  And even in situations where the mother is happy to take advice from the BfN and the doctor is not willing to accept that, the result depends on the hospital.  If one mother is able to sign a disclaimer to say she is taking guidance from the BfN against her doctor’s wishes (as has happened) why is this option not open to all mothers?  We understand that it takes time for hospital’s guidelines to catch up with the evidence, but in the meantime women need to be offered the ability to exercise informed choice.

What is currently happening is that mothers are being asked to choose between continuing to breastfeed and being given adequate pain relief.  This is totally unacceptable.

UNICEF Baby Friendly / World Health Organisation Code considerations

BABY FRIENDLY INITIATIVE

Again, it is not surprising that these recommendations are not routinely considered on adult wards, but this does need to be addressed.  Mothers and babies are separated for long periods of time, and separated overnight.  We know of a case where a mother has been advised to introduce solid foods to her baby, and stop breastfeeding her baby, even though the child is under 6 months old.  Just so this mother can undergo surgery.  Not only are Baby Friendly recommendations not being considered, but many healthcare professionals seem to think it acceptable to pass on their own opinions of infant feeding to their patients, with no reference to facts or evidence.  This then forms their recommendations about their patient’s treatment options, when these options should be being considered in the light of what is best for both mother and baby.

This quotation from page 10 of the World Health Organisation’s Global Strategy for Infant and Young Child Feeding (2003) is crucial in this regard:

“Mothers and babies form an inseparable biological and social unit; the health and nutrition of one group cannot be divorced from the health and nutrition of the other.”

Support for Maintenance of Milk Supply & Avoidance of Infection

breast pump

Where a Mother has to be separated from her breastfeeding child, it is important for her to be able to express breastmilk in order to maintain her supply, to avoid engorgement and pain and to stave off mastitis.  Even in a situation where a clinician cannot be persuaded to care about the health of the child, one would hope that the health of their own patient would be of interest.  Sadly, again this is not what we have seen.  Access to breastpumps on adult wards is extremely limited.  We have also seen mothers being told they cannot use their own pumps on the ward because the noise disturbs the other patients.  We have had mothers in extreme pain being told to mobilise themselves and make their way to private rooms in order to express.  Bearing in mind that to express to maintain milk supply requires 3 hourly sessions.

To require a lactating woman to simply stop removing milk from her breasts because she is in hospital poses a huge risk to her physical health as well as putting her through unacceptable levels of discomfort.

Emotional Support

baby crying

The above points focus on the ‘bare bones’ of what is happening, but the emotional impact is really the most striking point.  Not all babies are content to drink from a bottle or to be separated from their mothers, nor should they be expected to be.  Not all mothers are content to be separated from their babies.  Healthcare professionals seem to imagine that a baby sent home with Daddy will take a bottle and fall asleep with no problem to anyone, but the reality is that we have had babies screaming all night for their mothers, only to fall asleep exhausted on the breast when allowed in for visiting hours.  The distress this causes to all parties is not to be underestimated.

Our hospital facilities can clearly not always accommodate breastfeeding infants.  And some mothers will genuinely need to pause their breastfeeding or even cease altogether, even with the best information and support.  In these cases, we would hope to see compassion and understanding from the medical teams, as the mother (their patient) will be distressed.  As Emma Pickett IBCLC says in her wonderful blog post to GPs, mothers “want to continue breastfeeding and treat their other conditions. They don’t want to stop breastfeeding for even a day. That’s like asking them not to be a mother when breastfeeding really matters to them.

So what would we like to see change?  If you work on an adult ward, if you commission adult services, if you oversee adult services in a hospital, which of these issues could you begin to address?

  • Acceptance of the BfN Drugs in Breastmilk Service and/or Lactmed as appropriate information on medications for breastfeeding mothers
  • Access to breast pumps for lactating women, the ability to use their own pumps on the ward, and assistance for them to pump when they are in too much pain and discomfort to manage alone
  • Provision for breastfeeding mothers to feed their babies on the ward, either by having their babies stay with them or allowing them more access to their children than normal visiting hours would provide
  • Appropriate communication as to treatment options that are compatible with breastfeeding, and compassionate care and support for mothers who do have to pause in breastfeeding or cease altogether

From the stories we have seen to date, healthcare professionals on adult wards seem to focus on breastmilk as a source of nutrition, with little understanding as to how breastmilk and breastfeeding differ from alternative feeding options.  Formula and bottle feeding are seen as an appropriate and simple alternative for all babies, when we know that this is not the case.

Breastfeeding is often seen by staff to be a “lifestyle choice” rather than the biologically normal way for a child to feed.  The WHO recommendations that a child breastfeed exclusively for 6 months and then in conjunction with solid foods for a minimum of 2 years, are disregarded as idealistic by many hospital staff.  Yet as The Lancet series and numerous other studies have confirmed, these recommendations are key to the health of women and children.

Hospital departments do not work together or share equipment, so even in hospitals that have maternity units access to breast pumps on adult wards can be near impossible.  Even in hospitals that have Baby Friendly accreditation, this is often focused on maternity and neonatal units rather than being a culture across the hospital.  We would like to see hospitals put in place policies and guidelines for the treatment of lactating women across all departments, with an understanding that this is far from “just” a maternity issue.

Many adult wards are cramped, so cannot provide a cot next to mother’s bed; private rooms are a rarity. Plus health and safety issues must be addressed if a baby is mobile, as well as the infection risks to other patients of having babies and children on adult wards (and the risks to the children themselves).  We understand that perfect solutions cannot always be found.  But what we do ask is that staff are willing to be creative.  That hospitals are willing to consider accommodations that CAN be made.  And that everyone involved in the treatment of lactating women has an understanding of their emotional and physical needs.

For if breastfeeding women are not respected and accommodated by healthcare professionals within our nation’s hospitals, how can we expect the rest of society to take on board the culture shift needed in order to make breastfeeding an easier choice for UK families?

Helen Calvert and Asha Crocker

2016

Please follow our campaign on Facebook

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Asha Crocker is a 33 year old first time mum.  She says of herself “as a former Sociology teacher I love a good cause! I knew I wanted to breastfeed and assumed that it would be easy. I knew that is was the best thing for my son. However, despite the ‘breast is best’ rhetoric, there’s little support in helping mums to actually breastfeed and many obstacles put in the way to continue breastfeeding. I’ve had quite a traumatic experience breastfeeding my son. If it wasn’t for the help and support from the breastfeeding support groups around me, I don’t think we would have lasted even 2 weeks. He had a severe posterior tongue tie. At every turn, we were told by healthcare professionals that his latch was great. It was the breastfeeding support groups, the ladies that give their time up (for free) to support women like me who were struggling, that got us referred to the right people to have his ties released.

It is these women that got me into breastfeeding support and lit the fire for my passion. They helped me so much, so this is my way of ‘paying it forward’ and giving thanks for all of their time.

So I am a Breastfeeding Peer Suppor volunteer at both of my local Children’s Centres, which also means going to antenatal groups, ‘Bumps and Walkers’ groups etc to promote the breastfeeding support group. I intend to embark on my Association of Breastfeeding Mothers breastfeeding counsellor course this year, which means I will be able to support more women.

 

 

Are You Strong Enough To Change The World?

A couple of days ago, international breastfeeding expert Dr Jack Newman posted this on his Facebook page:

“On January 29 2016, the Lancet held a symposium on breastfeeding and its importance. Some big name speakers were there, including Dr Nigel Rollins, who is with the World Health Organization Department of Maternal, Newborn, Child and Adolescent Health. Dr Rollins spoke passionately about the importance of breastfeeding. Here are three quotes from his address:

Quote 1: “We have a growing body of evidence to support breastfeeding and as part of our review we came to be aware that women who want to breastfeed do not have the support that they often need. Gaps in knowledge and skills among health care providers often leave women without access to accurate information and support … investments to support breastfeeding are marginal and far from adequate.”

Quote 2: “Breastfeeding practices are highly responsive to intervention delivered in health systems, homes and communities. The large effect of these changes is achieved when these interventions are delivered in combination.”

Quote 3: “This is not about individual mothers either succeeding or failing. This is not about one lobby group winning over another; it´s not about our individual comfort zone or fashion; it´s about the survival and health of women and children today and in future generations.””

 

The Lancet series on breastfeeding has attracted a huge amount of media attention, and all of the major organisations with an interest in infant feeding have tried to stress what Dr Newman picked out in his quotes above.  Support is lacking.  Healthcare providers lack knowledge.  There is not enough investment.  Individual mothers are not to blame.  This is about health.  Sue Ashmore of UNICEF wrote this blog post in response to the series.  There has been excitement about the fact that this type of in depth research could finally grab the attention of the politicians and commissioners who have so far been uninterested in improving support and health outcomes for families.

And then of course the media got hold of the story.  And decided that the best thing to do would be to highlight not the lack of support or investment, not the call for combined efforts to deliver joined up services to improve the health of the next generation; no the media decided to put on the spin that this country is “the worst”.

World's Worst

This was of course the article that the majority of people saw because it was in the mainstream.  Not a lot of people read UNICEF blogs or articles from The Lancet every day.  So the first thing women saw was the idea that we are ALL one great big failure.  You know that narrative that the media loves about some women feeling “pressured” and some women feeling like they have “failed”, and you know how we all buy into that because we’re mothers and guilt is our constant companion?  Well that is the same old narrative they went with this time.  Wonderful.

This was the cover of The Lancet:

Lancet cover

Why wasn’t that the headline?

But now the arguments had started.  The same old arguments.  “This is about third world, low income countries, not the UK”.  Not it isn’t, it’s about the whole world.  The Lancet specifies “Our systematic reviews emphasise how important breastfeeding is for all women and children, irrespective of where they live and of whether they are rich or poor.”  But it was too late.  Everyone had run off to their usual corners, their starting positions, and the fight was on.  “I feel pressured” “I couldn’t do it” “My kids turned out fine” “You’re shaming me” “It doesn’t matter how they’re fed” “Stop blaming me!”

And so do you know what has happened now?  There is a moment here where the people with the influence to do so could be persuaded to finally take this issue seriously.  There is a moment where a major health issue, for the whole world, could be tackled.  But the big organisations who were so intent on making this happen are hesitating.  Do you know why?

In case they hurt our feelings.

The health of successive generations of children is being put to one side in favour of keeping us happy.  You and me.  How we feel about the feeding choices we made is so noisy, so full of anger, so upsetting for people to deal with, that people who are dedicating their lives to infant health are backing away.  They are wondering whether they should push this.  They are thinking maybe they will leave it for another day.

Are we really that weak?

Okay, so I stopped breastfeeding because I was exhausted.  Okay, so I was struggling with my mental health and chose to sleep and put my baby on formula.  Okay so you and you and you and you all have a story to tell. It was much worse for you.  It was much harder for you.  You have been through some terrible things and the guilt is always with you.  I know, I’ve heard your story.  And yours.  And yours.   Some of the stories have made me cry.  Some have left me furious at the lack of support you received.  Many have left me fully in agreement with you that breastfeeding wasn’t for you.

Is all this really a reason to avoid looking at ways that we can improve the health of our children and grandchildren?  Breastfeeding protects the health of mothers as well as babies so our daughters could benefit from breastfeeding their own children.  Our grandchildren could certainly benefit.  But policymakers are wary of trying to help them in case they upset us.

So I am asking you today – are we strong enough?

Are we strong enough to support our friends who make a different feeding choice from us?  Are we strong enough to accept the evidence despite not having breastfed ourselves? Are we strong enough to call for action when it means looking full in the face the fact that we were not able to do what we are calling for other women to be supported to do?

Are we strong enough to try to gently change the world, one public breastfeed at a time, instead of getting angry and causing division when we are challenged?  Are we strong enough to promote responsive bottle feeding instead of questioning a woman’s choice to use formula?  Are we strong enough to put aside the “breast is best” that makes us feel so smug and instead shout from the rooftops that “choice and health are best”?

Because that’s what we need to do.  We all need to take a look at our behaviour.  At the language we use.  At how quick we are to feel offended.  At how quick we are to imagine that the person speaking/writing/tweeting is talking about us, is attacking US.  At how we approach and support other mothers.  At how we respond to information.  We need to take a look at the part WE are playing.  Yes we need support.  Yes we need understanding.  No we should not be made to feel as though we are doing something wrong because we have chosen something that suits us, that suits our children, that suits our family.  But we are also adults.  We are women.  We are not weak and pitiful and incapable of owning our decisions.  We are strong and intelligent and capable of putting aside our differences to call for ACTION that will, without doubt, improve the health of our children and their children and our neighbours and our friends.

I know that we can do it.  Who is with me?

strong-women