#hospitalbreastfeeding Part 1

On Thursday 7 May I am hosting a #WeNurses Twitter chat on Breastfeeding Support on Children’s Wards.  In advance of that, I would like to outline in a couple of blogs what is the #hospitalbreastfeeding campaign, and how it came about.

Followers of my blog will know that my younger son, David, was born with the congenital heart defect Hypoplastic Left Heart Syndrome.  This meant that he was transferred to Alder Hey Children’s Hospital at a day old, and despite having had a c-section I requested I be discharged from St Mary’s the same day so that I could be with him.  Alder Hey was therefore, to all intents and purposes, my maternity hospital or postnatal ward.  David was there until he was just over 3 weeks old, and I have written about our experiences surrounding his birth, and my breastfeeding journey with him.  He had my milk from the day of his birth (via NG tube) and I continued to express for him until he latched on to me at 4 weeks old and has been breastfed ever since.

At 5 months old David had to have a second open heart surgery, again at Alder Hey, and he was in hospital for just under a week.  I was concerned about how I was going to be able to breastfeed him post-op, as he would be fully tubed up again, including a couple of heavy duty chest drains.  In the event, I drop fed him over the cot – leaving him lying down whilst I leant over him and popped my nipple into his mouth.  Once his drains came out I was then comfortable snuggling him again and normal feeding resumed.

Alder Hey

On both of the occasions that David was an inpatient at Alder Hey it was apparent to me that there was huge variation in breastfeeding knowledge amongst the nurses, and also a huge variation in their interest in the subject.  The SALT that we saw was a lovely lady but was clearly not trained in breastfeeding support, and neither was the dietitian, who confidently told me that we would be able to move David onto a four hour routine soon enough.  As I said then, “a 4 hour routine? For a breastfed baby?!”  Or any baby for that matter.  The overall impression I got was that breastfeeding was seen as a lifestyle choice, which some nurses supported and others did not, but it was certainly not seen as an important part of paediatric care.

The day after David was discharged following his second operation, I wrote to Jonathan Stephens, Finance & Business Development Director at the hospital:

Letter of 27 Feb 2014

Extract from letter of 27 Feb 2014

Since writing that letter I have had many discussions with nurses who are very keen to provide top notch breastfeeding support and information, so I am no longer certain that the nurses should be absolved of this responsibility.  But I stand by my assertion that I have no complaint against the nursing staff at Alder Hey.

Ever aware of the controversies surrounding infant feeding choices, I was keen to make clear in my letter that “Of course not every mother will want to breastfeed. Of course the hospital should support individual’s feeding choices, especially when parents are already under pressure due to a child’s illness. But at the moment it is the mothers who desperately want to breastfeed who are being let down. And by extension their children are being let down.”  I went on to outline the benefits of breast milk and included a link to the Baby Friendly report “Preventing Disease and Saving Resources“.

I also explained “I have no professional interest in breastfeeding promotion, but I do run an online support group for mothers (membership currently 600+) so have a daily insight into the challenges and emotional impact of the breastfeeding journey. Our membership includes mothers who were not supported to continue breastfeeding when their children were hospitalised and many of them deeply regret this. Bottle feeding is not the “easy” option.”

Jonathan was prompt with his response and promised to look into the issues I raised.  Within a month, I received a letter from Liz Grady, Health Promotions at Alder Hey who, it turns out, is responsible for breastfeeding support.  I had been a breastfeeding mother in the hospital on two occasions but I had never heard of Liz let alone met with her.  Her letter was detailed in its response to my points, and she ended it by suggesting that we meet up to further discuss, should I be interested in doing so.  So meet up we did!

Since that initial meeting, I have had the privilege of working with Liz on updating the breastfeeding policies for the hospital, and we now meet every few months to catch up on the progress of the work Liz is doing to support breastfeeding mums.  It turns out that she is a knowledgeable and dedicated lady, doing her very best to support breastfeeding as part of her Health Promotions remit, which also includes numerous other areas.  She is helped in this by the Bosum Buddy Champions, most of whom are Healthcare Assistants, who work on the hospitals wards.  My supposition that no one in the hospital had a professional interest in breastfeeding had been proven wrong, although my belief that far more breastfeeding support staff are required remains.

On being asked to review and contribute to the updated breastfeeding policies for Alder Hey, I decided to take to Twitter to find out what IBCLCs and breastfeeding supporters would want to see in a hospital breastfeeding policy.  This turned into a far larger Twitter conversation than I had anticipated, and came to the attention of the lovely Kath Evans, Children’s Nurse and Head of Patient Experience at NHS England.  Kath was very encouraging of the discussions I was having, and it was her backing that led me to launch the hashtag #hospitalbreastfeeding and start what was to become a Twitter campaign.

hospitalbreastfeeding

Those initial conversations under #hospitalbreastfeeding linked me up with paediatricians, nurses, breastfeeding support workers, anaesthetists and others who all had an interest in the importance of breastmilk for sick children, and in the best ways to support families who wished to breastfeed on the wards.  I typed up the early discussions into two transcripts of around 20-30 pages, and will share some extracts here (my comments are in red):

transcript 1

transcript 2

transcript 3

A lively discussion as you can see!  I was also keen to point out and combat the perception that breastfeeding is “tiring” for sick children.  From Dr Jack Newman’s ‘The Ultimate Book of Breastfeeding Answers’ p231

Marino BL, O’Brien P, LoRe H Oxygen sats during breast & bottle feeding in infants with CHD J Pediatr Nurs 1995;10:360-4 - that's the original study as confirmed by Dr Newman

Marino BL, O’Brien P, LoRe H Oxygen sats during breast & bottle feeding in infants with CHD J Pediatr Nurs 1995;10:360-4 – the original study as confirmed by Dr Newman

transcript 4

Whilst the #hospitalbreastfeeding discussions were taking off, Liz Grady finalised the new Breastfeeding Policy and Expressed Breast Milk Standard Operating Procedure for Alder Hey.  I am honoured to have had a small hand in these, and particularly like these extracts:

Extract from Alder Hey Breastfeeding Policy

Extract from Alder Hey Breastfeeding Policy

Extract from Alder Hey Expressed Breast Milk Standard Operating Procedure

Extract from Alder Hey Expressed Breast Milk Standard Operating Procedure

Extract from Alder Hey Expressed Breast Milk Standard Operating Procedure

Extract from Alder Hey Expressed Breast Milk Standard Operating Procedure

Extract from Alder Hey Expressed Breast Milk Standard Operating Procedure

Extract from Alder Hey Expressed Breast Milk Standard Operating Procedure

Liz has also got breastfeeding procedures and tracking included onto the computer system for the new hospital which is opening in September of this year.  She is currently finalising a booklet of breastfeeding information, based on the new policies, that can be given to all breastfeeding families on their admission to Alder Hey.

In order to further spread the message of #hospitalbreastfeeding, I decided that I wanted to produce information targeted at HCPs, explaining why families might be so desperate to breastfeed their sick child, and how breastfeeding can actually compliment other areas of paediatric care.  In November 2014 I launched http://resources.heartmummy.co.uk/which has posters to download for free, explaining the benefits of breastfeeding to those caring for a sick child.  It also has links to the evidence on which the posters are based, and other useful breastfeeding information.

Nurses poster from www.heartmummy.co.uk

Nurses poster from http://www.heartmummy.co.uk

I was delighted at the response to the website, particularly when the UNICEF Baby Friendly Initiative chose to publicise it in their January mailing:

BFI January mailing

BFI January mailing

It amazes me that this is where it all got to in fewer than twelve months.  I have to thank Kath Evans for encouraging me, and Liz Grady for allowing me to get involved with what is happening at Alder Hey.  The first months of 2015 have seen further developments, but for that you will have to wait for Part 2.

Follow the campaign on Twitter #hospitalbreastfeeding 

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14 thoughts on “#hospitalbreastfeeding Part 1

  1. Such an interesting post Helen and sounds like you have been doing amazing work at helping challenge and improve things for mothers who want to breastfeed. Your words about challenging the perception that breastfeeding was “tiring” for sick children particularly struck a chord and I remember making the decision to give formula top-ups because I thought Jessica was getting tired too quickly when breastfeeding. As it turned out, I did manage to breastfeed long-term with Jessica despite two bouts of chylothorax but it was more down to stubbornness on my part than having adequate support. Thank you for all you do to help support other mums in this situation.

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    • Thanks Louise. “The breastfeeding is more tiring” idea is the myth that refuses to die. If a baby is able to feed orally, that baby can breastfeed. The only circumstances under which bottle feeding is less tiring is if the contents of the bottle are literally tipped down the baby’s throat without the need for baby to suck. Which sounds like an aspiration risk to me.

      If baby can suck, baby can breastfeed. H x

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  2. It was really interesting to come across this post today as I was looking for an image for Alder Hey.
    My heart boy was born in April 15, as you wrote this post. We were transferred to Alder Hey before he was 12hours old.

    I really wanted to breastfeed him. But I received virtually no support, with staff clearly preferring him to have a ng tube for the 6days before his first heart surgery. Although they provided the materials to be able to express I was left feeling very awkward when I did, and therefore probably did not pump enough. I kept trying when nobody was around and eventually he latched on the night before his operation, this was the only time I fed him.
    When he finally came off the ventilator 4 weeks later I was advised to continue expressing rather try the breast again and to top up with formula so that the amount he drank could be measured each day.

    I am really glad someone is fighting the corner to breast feed even on picu. On behalf of future heart mums in my situation I thank you.

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    • Thank you for reading Kate, and for your comment. I hope your little boy is doing well. I am so sorry that you were not supported to reach your breastfeeding goals. If you would like to tell your story in full on my website please contact me at enbris@gmail.com xxx

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  3. colette palin says:

    Hi Helen, had my first chance to read nearly everything on heartmummy, what amazing work you have done/are doing.
    I am wondering whether I can share you powerpoint slide readmissions during our BFI training next week, the themes identified are consistent with my experience. Many thanks Colette

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