Stand Up and Be Counted

Over the last four days I have attended two political events, a whole new world for me.  On Saturday I was at the first party conference of the Women’s Equality Party, and today I attended a Health & Social Care event for Andy Burnham’s campaign to become Mayor of Greater Manchester.

I had been hoping to attend the WEP conference, but it was expensive and I wasn’t sure I could justify it.  Then Donald Trump was elected President of the United States, and suddenly it felt like there was nothing more important than lending my support to a party dedicated to women’s equality.

I could only be there for the Saturday, but what a brilliant day it was.  I had the privilege of hearing Sophie Walker’s leadership speech, which received a standing ovation and was one of the best political speeches I have heard in a long time.  Passionate, sincere, spoken without notes or an auto-cue, the only other public figure to have spoken like this in recent times is Michelle Obama.  I urge you to watch the full speech here:

My first breakout session of the day was led by Sue Tibballs, talking about the What Women Want 2.0 project.  Please lend your voice to this if you have not already done so.  The interim findings, according to the project’s website, “show that women are feeling angry and let down by the lack of progress towards gender equality and alarmed by increased and intense objectification of their bodies and those of their daughters.”

There were so many other sessions that I would have liked to attend, but I chose to spend the afternoon in the Open Space facilitated by Stella Duffy, discussing what the party had missed in terms of the policy areas it was already looking at.  This was very much the place for me, as my areas of interest – maternity, infant feeding, family and the early years – did not feel a part of the WEP proposition.

Stella explained the way that Open Space works: anyone could call a “session” about whatever was their passion, and others could join sessions/discussions as they chose.  She said that she would ring a bell and then the floor would be open for people to call sessions, but not to worry if no one stood up to begin with as often it takes time for people to pluck up the courage.  Well she rang the bell and about 5 of us jumped up like we were out of the starting gates!  I called a session on “Growing Families and Women’s Equality – can WE include maternity and the early years?” and the lovely Esther Malvern whom I had the privilege of meeting on the day called one on supporting women’s feeding choices.  I wasn’t alone in my quest to bring motherhood to the conference!

Esther’s session was in the first time slot, and we had a fantastic discussion about all of the things that come into infant feeding, and what we would want the WEP to take on board when thinking about party policies on this issue.

Then came my session, and I tried to include as much as I could from the #MatExp community and Growing Families.  I was ably assisted by Clare Hobro with whom I had some very useful discussions.

Notes from all of the sessions were then to be typed up by Stella herself and fed back to the party leadership.  Genuine crowd-sourcing of ideas and listening to all voices.  There was so much enthusiasm at the end of the afternoon, people felt they had really been heard and that space had been provided for them to express their concerns and passions without fear of judgement or disdain.

You can catch up with the whole conference on Twitter by checking out the hashtag #WE2016

Today’s Health and Social Care event at Clarendon Sixth Form College in Tameside had echoes of Saturday’s conference.  There was a genuine desire to hear the voices of the people in Greater Manchester and to have them contribute to Andy Burnham’s manifesto and proposals for the area.  The hashtag for the afternoon was #OurManifesto.  It was great to see some of the college students there taking part in the day, as well as members of the public from the area.  I had to take David along with me so there was even a 3 year old contributing his opinions (which were mainly along the lines of “why do I have to be quiet?” and “can I have more chocolate?”).

I chose to attend the event today because I have so far been impressed with Andy Burnham as a political figure.  My late friend Jane Hanley was a constituent of his, and always spoke highly of him, and I have yet to find anyone who has met him or worked with him who goes against her opinion.  In a fit of post-Trump gloom I emailed him expressing despair at current politics and a fervent hope that he could address some of my areas of interest for Greater Manchester.

Not only did Andy respond with alacrity but he answered my queries, and did what he said he would do, namely popping in to Alison Thewliss’ APPG on Infant Feeding.  In fact, he went one better and attending the launch of the UK’s first World Breastfeeding Trends Initiative report in Parliament that day.

A politician who says the right things and does what he says he will?  Something of a unicorn I thought…..

Having listened to the speeches outlining the current thinking of the Burnham for Mayor campaign this afternoon, I joined the breakout session on public health.  It wasn’t facilitated with Stella Duffy’s ease and warmth, but it was still an opportunity for everyone to have their say, and all were encouraged to do so.  I was able to talk about the need for breastfeeding support, protection for health visiting services and school nursing, and the need for better support for new parents across the board, as crucial public health interventions for this generation and the next.

Unfortunately at the end of that session David had had enough of politics (he had been so good bless him) so we made our exit.  Not before bumping into Andy Burnham on the stairs though, and having a quick chat about the stats from the WBTiUK report that had concerned him.  He was gracious enough to ask me if I would like to meet up properly in the future to further discuss infant feeding and the early years, so fingers crossed we can find a time in his no doubt manic schedule.

What have I learned from these two events?  I have learned that at least two political parties/campaigns are genuinely crowd-sourcing information and are open to hearing all voices.  Your voice and my voice.  That nobody else in the room has more right to a voice or an opinion than you or I, and that most of the people having their say are no more “expert” than we are.  There are priorities being set and issues being considered based on the voices of the people who show up, so please make sure you show up.

Stand up and be counted.

Blue Sky Thinking

For those of you who think I have zero commercial awareness (and I know there are a few), this will probably strike you as my most naive suggestion yet.  But if we don’t put forward our crazy ideas in these times of trouble, then what’s the point?  Anyone with a more perfect solution, please step forward.

So you may have seen the new page on my website, entitled “get moving“, which is about things we as individuals can all actually DO to try to mitigate the effects of this dreadful year.  One of the things I have shared is the Stop Funding Hate campaign’s video about this year’s Christmas adverts from some of the big retailers.  The campaign’s argument is that, whilst these adverts play on a spirit of goodwill and togetherness, the retailers themselves have big advertising contracts with the tabloid newspapers that are spreading hatred and division in this country.

It struck me this morning that this ties in with another area of concern that I have: the advertising of formula milks and breastmilk substitutes in the journals of our midwives and health visitors.

So here is my suggestion:

Please could John Lewis and Marks & Spencer cancel their contracts with obnoxious tabloids.  With the enormous amount of money they will save, they can take out advertising with CommPrac, the Journal of Health Visiting, the British Journal of Midwifery and others.  These publications will be a lot cheaper in which to advertise, and incidentally are mainly read by the key demographics for John Lewis and Marks & Spencer: working women in their thirties, forties, fifties and sixties.

This will enable these journals to break their ties with odious companies which seek to spread misinformation about both formula milk and breastfeeding, to the benefit of the families that midwives and health visitors support.

The substantial resources of these retailers could also enable our health service journals to run advertisements for the charities and voluntary organisations who actually seek to help formula and breastfeeding families, such as First Steps Nutrition Trust, the Local Infant Feeding Information Board and the Drugs in Breastmilk Information Service, to name but a few.

How about it everyone? Crazier things have happened this year…….

Helen Calvert
November 2016

www.heartmummy.co.uk

Breastfeeding and Upper Lip Tie – one Mother’s story

My thanks to this mother (who wishes to remain anonymous) for sharing her story with me, and asking me to share it with you all.

I have a daughter born 25th January this year, and my son in January 2014. I struggled to breastfeed my son – I was producing 50oz of milk a day, his latch ‘looked’ perfect despite being agony, but he was colicky, constantly screamed and obviously couldn’t get what he needed. The latch was so painful I couldn’t even bring myself to have him latch after the foot prick test (and was made to feel dreadful for that by the HV who thought I just wasn’t trying hard enough). We lasted three weeks in total, despite my crying out for bf support (useless and pressured, no actual support or advice offered), I became obsessed with pumping and lack of support plus my failure to breastfeed successfully triggered PND. I was told that I hadn’t persevered enough, it can hurt and that I had given up too early, it was my own fault for supplementing and basically felt like crap.

I had been doing my own research in the meantime, and suspected top lip tie. I asked my HV, GP and bf support – all said he had no tongue or lip tie. I asked about the top lip, was given an odd look and they confirmed his mouth was fine.

Fast forward to a year later, different area and different health team and it was correctly identified by an HV, and my GP, and eventually a specialist. All said it would have at the very least hindered my breastfeeding latch and could have contributed to colic (bad latch would mean more air inhaled). By this time I was pregnant with my daughter, and desperate to avoid the same situation.

My midwife was an absolute angel, took detailed notes and plastered everywhere in my birth notes for a full mouth check to be completed at my daughters c-section. We discussed bf support, advice, and how to make this attempt more successful. She was wonderful, supportive and caring and I was determined to bf exclusively for at least 6 months – and she reassured me that it was possible. She was marvellous.

So. My daughter’s birth was perfect, beautiful and the team wonderful. I asked if they’d completed the mouth check, and they reassured me all was fine. I successfully breastfed in theatre, and I can’t describe how much that meant.

We managed two more feeds successfully. But then the night was awful – she screamed for five hours, couldn’t latch, jerked her head off my nipple and was desperate to feed. I knew. I checked her mouth, and she had a more severe top lip tie than my son. Now she had fully woken up from the section, she couldn’t successfully get milk. I rang for help, asked them to check her mouth – did you know that the top lip isn’t checked routinely for a tie? I didn’t. But apparently so. I explained, but no one knew what to look for. They checked my latch and said it was perfect (it wasn’t, but looks that way due to tie) and that breastfeeding was very hard etc etc learning curve. I rang twice more for help. Same again. Eventually, I rang and a student nurse came, and offered to stay with me to see if she could work out the problem. She was brilliant. She agreed that there was something wrong, as Cerys had been at my breast, frantic, for 30 minutes and was no more satisfied. She offered formula, I refused. She took Cerys to an older MW for a second opinion, and it was agreed that top lip tie was possible, and affecting feeding. I was booked into the breastfeeding expert the next morning, with the plan being that it would be resolved then (i.e. cut) and we would just get through the night. I again refused formula, so the student midwife spent three hours massaging my breasts to express milk into a syringe. Thanks to her, my daughter got 50ml of colostrum, and I am very grateful for that.

The morning came – I had been up for 26 hours by this point, but I was so hopeful. A few nurses came and asked to see Cerys’ mouth, as they had heard of the problem but never seen it before. The expert arrived, listened, checked Cerys mouth and simply said ‘I can’t help you.’ Literally her opening sentence. Apparently, despite my being assured repeatedly that it could be cut easily, top lip ties are not treated the same as a simple tongue tie. If I wanted it cutting, I had to wait for a six week NHS referral. Or travel to London for a private consultation (post c-section, with my toddler too). I asked to pump but was asked doubtfully if there was much point…? I was almost hysterical at this point, to be honest. I was devastated, genuinely gutted that not only was my breastfeeding journey going dreadfully already, but that it was also worse than with my son. I’d failed again.

I tried with the hospital colostrum pump (with no offer to help or support me to use it). It didn’t work for my already engorged breasts. I was told I couldn’t bring my own pump in, until my milk came in. Despite trying all manner of positions to breastfeed, it wasn’t working. I couldn’t concentrate to hand express into a syringe on my own while Cerys screeched at the top of her lungs. In the end, after my lovely midwife visited and she did her best to help, we agreed to formula feed (she was concerned about my PND/pumping previously, and to be honest I was probably acting a bit unhinged at this point). She held me while I cried and told me I needed to be well, I could love and be a brilliant mum regardless of how I fed. She was an angel, again. And I think (although it pains me) she was right – I would have started the obsessive pumping cycle and made myself ill again. For that, I can look at this decision with more peace in my heart.

An older midwife also checked Cerys’ mouth more in depth as she had heard what had happened, and confirmed top lip tie, and also said she has a tilted palate and low sucking action. Basically, she couldn’t suck enough for my nipple to fit correctly in her mouth either. Again, this brought me peace as I was reassured I hadn’t done it wrong – it was genuine.

What I would like is more people to be made aware of what a top lip tie is, what it looks like and how it affects breastfeeding. I would like it to be included as part of the routine full mouth check. I would like health care staff to be aware of how it is corrected, the procedure etc. There was so little knowledge that I was having to explain what it was to them, show them what it looked like. And this disaster happened despite the team being fully informed (via my notes) and my wonderful midwife’s efforts. I’d like more support for pumping/syringe feeding if mothers are still determined to feed breastmilk exclusively – it can be done; and those women should be empowered by the choice. At no point was donor milk seriously talked about, though I did ask – I was made to feel even more like a crazy person obsessed with breastfeeding!!

The whole thing was so disappointing, and I felt like I wasn’t taken seriously or listened to. I was talked over, down to and yet I knew I had more knowledge on this subject, as they didn’t even know what I was on about. It felt awful. Truly awful. They were extremely short-staffed, and I understand that, but I’d also hate to think this lack of awareness and sensitivity could be happening elsewhere. Given that I’ve identified at least four of my friends’ children with a top lip tie (despite their HV etc saying all is fine, no problem, and only checking bottom lip and tongue) I suspect it is.

Post-script from heartmummy: I asked this Mother if she had provided feedback to the hospital and she told me that this is the first time she has shared her story.  She said:

“I honestly didn’t want to feel like I was troubling the hospital I stayed at, I don’t get the feeling they would look at it as an experience to learn from, rather that I was being difficult. I overheard the head of the ward describing me as such, though she was beyond pleasant when she realised I could have heard her comments….”

For more information on upper lip tie, please see
http://www.analyticalarmadillo.co.uk/2015/01/upper-lip-tie-fall-guy

** Edited to add this statement from the Association of Tongue-Tie Practitioners: http://www.tongue-tie.org.uk/lip-tie.html **

 

Helen Calvert
November 2016