Anthea Tennant-Eyles, Research Lead and Breastfeeding Peer Supporter
New research published here by Cardiff University and The Breastfeeding Network highlights inequity of access to breastfeeding support for families across England and Wales, a pattern of decreased funding since 2015 across England and loss of funded peer support training across Wales. One peer supporter describes changes to local support as ‘a skeleton with all the flesh removed’.
This research looks at data from local authorities, CCGs, health boards, infant feeding leads, peer supporters and service-users on breastfeeding support services. The need to value breastfeeding support (including peer support) at all levels has been a key finding.
Good practice of this has been reported. One Infant Feeding Lead describes a maintained level of funding, with BFI accreditation, a staff team to support the infant lead role and a peer support service that is ‘fully integrated and offers comprehensive very high level support across all areas of maternity and health visiting services.’
High-level investments are needed across England and Wales to ensure that there is equity of access to breastfeeding support.
One peer supporter noted, “it was different in every local authority or health board … it was a post code lottery … until after you had your baby, you didn’t really realise how much that mattered in terms of what support you would get”.
So why is academic research on breastfeeding so important? To inform policy makers on the importance of providing dedicated breastfeeding support services to local families and that services are protected for the well-being of future generations.
This time last year, we published a joint statement with a number of other organisations, expressing our concern at the fragility of infant feeding support in the UK, exposed by the Covid-19 pandemic. Unfortunately, not a lot of progress has been made towards remedying this situation in the past year, and this new report only serves to highlight the continuing need for change. We stand by our statement and are still calling on the UK government to work towards reducing health inequalities and improving provision of adequate breastfeeding support for all. You can read our original statement here: https://www.breastfeedingnetwork.org.uk/2020statement/
Do you see people who look like you on our website or in our social media posts?
As a charity, we are constantly striving to be as inclusive and diverse as possible in our content, as part of our commitment to offer support to all families, regardless of their age, disability, gender, race, religion or belief, sex or sexual orientation. But we are painfully aware of how homogenous images of breastfeeding can be. In the top 20 results of a Google image search for “breastfeeding”, there was just one image that did not appear to depict a White family; just one that showed a same-sex couple; none at all that appeared to show families with a disability (though of course we appreciate that characteristics such as disability, gender and sexuality are not always visible).
We want to change this. We want to support every family, and we know that we are much more likely to achieve this if we reflect as many of you as possible in the imagery we use. So as part of our ongoing work to make our charity more diverse, we’re appealing to all of our followers to help us build a bank of authentic and truly inclusive breastfeeding images for use in our communications.
We want to see what breastfeeding looks like for you, in your everyday life, so we can better reflect the wonderful diversity that we know exists among breastfeeding families.
We would welcome a variety of image styles – for example:
While it would be lovely to see your face, if you’d rather remain anonymous and be cropped out, that’s fine too.
There’s no need to show a bare breast or nipple if you don’t want to, in fact it can be great to show how discreet breastfeeding can be!
We’re not looking for clinical “textbook” images, in fact quite the opposite. So don’t worry about turning your photo into a demonstration, we’d much rather see the human, everyday side of breastfeeding.
Your photo does not need to be perfectly styled or staged – it would be great to see real life, so if there are toys strewn around or washing drying in the background, so be it.
It can be helpful to show that breastfeeding doesn’t always have to take place in a comfy chair – so photos of breastfeeding out and about or in interesting or unusual locations would also be great!
We would particularly welcome images of:
Black, Asian, Minority Ethnic or interracial families
Breastfeeding with a disability (whether this is a parent or child)
Parents in same-sex relationships
Breastfeeding older children, or tandem feeding
Breastfeeding alongside those people who have supported you to breastfeed – for example your partner, a grandparent, a friend, or a peer supporter.
How to contribute
If you’d like to contribute, here’s what you need to do:
Email your photo as an attachment to firstname.lastname@example.org. You’ll also receive an automated email to remind you, if it’s easier just to reply to that. Please do not send your images without completing the consent form first.
You’ll also have the chance to enter our prize draw to win one of five lovely BfN coffee cups – full competition rules available below. If you’d like to enter, just tick the box when you fill in the consent form. The winner will be announced at the end of the appeal.
Once collected, we will share all of the images in an album on our Facebook page, and then they will be featured on an ongoing basis in our social media posts, on our website and in some printed communications. More details on how photos may be used can be found on the consent form linked above.
We’d also be grateful if you’d share this appeal with any other breastfeeding families you know. Thank you!
Prize Draw Rules
No purchase necessary. Any purchases made do not increase your chance of winning.
Completing the consent form stating that you’d like to enter the draw, then emailing your photo, is the only way to enter. Likes or shares on social media posts relating to this competition are not a condition of entry.
Competition opens on 02/07/2021 and closes at midnight on 31/08/2021. Entries received after this time will not be entered into the competition.
The winner will be chosen at random after the closing date.
This competition is being run exclusively by the Breastfeeding Network (BfN), and is not endorsed, sponsored or administered by Facebook, nor is Facebook associated with this competition.
Five winners will each receive one BfN-branded reusable coffee cup. There is no alternative prize.
The Breastfeeding Network (BfN) reserves the right to publish your image(s) as part of our online or social media promotion of this competition or others in future, or for other marketing purposes as stated on the image consent form.
This competition is void where prohibited.
The Breastfeeding Network (BfN) is committed to protecting any personal information that we collect. Your personal information will be collected for the purpose of this competition only. You can read our Privacy Notice here.
BfN’s plans to support Wendy Jones’s retirement came to fruition last weekend when our new team of trained volunteer pharmacists took up the baton of responding to enquiries to the BfN Drugs in Breastmilk Service Facebook page.
Shereen Fisher, Chief Executive for the BfN said, ‘In 2019 we asked evaluators at Swansea University to set out the key recommendations for taking our Drugs in Breastmilk service forward – I am pleased to say the number one recommendation was to train more supporters and ensure longer term stability, and last Saturday showed the progress we are making.’
The new team of volunteer pharmacists, who are all trained BfN breastfeeding support helpers, have shared in our vision as we look to the future, supporting breastfeeding parents and healthcare professionals with queries about drugs in breastmilk.
We are so fortunate to be able to bring a huge amount of expertise and energy to the service, with our new group of 11 pharmacists, many of whom already work in women’s health and have experience supporting breastfeeding families via social media, both voluntarily and professionally.
As BfN continues to work with the new Safer Medicines in Pregnancy and Breastfeeding Consortium led by the Medicines in Health Regulatory Authority, this new team is supporting an enormously valuable and valued service to provide information, empathy and understanding to the thousands of enquirers who contact the service each year.
The volunteer team have got off to a great start with the guidance and support from supervisors and Wendy remains on hand throughout the summer while the service transitions. BfN are making plans for a proper celebration to mark Wendy’s unwavering commitment and contribution to supporting breastfeeding families over the last two decades.
Wendy Jones says “I am delighted to leave the BfN Drugs in Breastmilk service in safe hands. My dream over the past 26 years has been that all women are empowered to make evidence based decisions on medication whilst continuing to feed their babies and that all healthcare professionals feel fully informed when prescribing to them. My passion for this subject continues. I feel very proud that another 11 pharmacists share my feelings. I’m looking forward to more time with my family, my animals and my garden, but yet another book might be needed before I put away my computer!’
It’s been an unforgettable year for the Breastfeeding Network, with record breaking numbers of mothers and parents supported on the National Breastfeeding Helpline and by our peer supporters across England, Wales and Scotland, who have adapted to supporting new parents and families online. The way the charity has responded under pressure and to the challenges has been truly amazing. So I am thrilled to be sharing yet another success on top of this….
Under the guidance of the BfN Board, we started the journey of reviewing our governance practice many years ago. But we only felt able to formalise a process for seeking external review for BfN in late 2019, when Ann Kerr (BfN Chair) spotted details on the Good Governance Award at a training event for charities in Scotland. Good governance is fundamental to a charity’s success. It enables and supports a charity’s compliance with the law and relevant regulations. It also promotes a culture in which everything works towards fulfilling the charity’s vision.
The Good Governance Award is the Quality Standard for Scottish charities, recommended by OSCR. The Award supports and celebrates governance best practice, recognising the importance of good management to the efficacy and efficiency of Scottish Charities. Dundee Voluntary Action developed the Award, and Chief Executive Shereen Fisher said, “We know that BfN is well thought of for its breastfeeding information and support by Mothers, Parents and Families, but we can also now show parents and families and the wider public that we are well-run and well-governed – this will bring a new layer of trust and confidence”.
What was the process?
The Board of Trustees and the Central team have spent the last eighteen months following a clear, structured approach to assessing and improving the charity’s policies and procedures. The charity has looked closely at the following areas to compile an eportfolio which evidences competency and best practice in:
Planning, Delivering, & Monitoring
Managing Staff & Volunteers
Marketing & Communications
Completion of the award provides proof that BfN is actively engaging in excellent governance through our Award Certification. It adds value and enables us to build a sustainable, better future for all of the families that we support. BfN have been awarded three years of Good Governance Award status and will be involved in a forum to support re-assessment.
BfN peer supporter and Camden Baby Feeding Team member Zamzam Elmi talks about her experience breastfeeding 4 children through Ramadan, and the decision she made each time. She also explores how we can best support Muslim mums to breastfeed during Ramadan, whether they decide to fast or not.
Ramadan Karim! May we all have a fulfilling and blessed month.
Firstly, I would like to say that Allah is aware of what you can bear or manage and will not expect beyond that.
Deciding on whether to fast or not is a tough and spiritually challenging decision to make especially knowing how blessed/special the month is, but we are fortunate that we have been given concessions by his mercy.
Remember that breastfeeding is a form of worship if done with right intention, and taking advantage of the concession is God given right to protect us and our babies.
Listen to your body and keep an eye on your baby if you do decide to fast, speak to a health professional if you have any concerns or worries. Also take your prenatal vitamin as levels of nutrients such magnesium, potassium and zinc may be affected.
Every drop of breast milk is reward gained and you can still gain more spiritually by reading the Quran and doing your dhikr whilst breastfeeding or bottle feeding. This is a lovely time to bond with your baby as well as lifting you spiritually and emotionally.
With all my children I did different things depending on the situation.
My first child was premature and I was expressing, so during his first few week of life I fasted some days and not others.
With my second child, I could not fast at all as she feed frequently. I made up the fast later once she was weaned.
As for my 3rd child, also exclusively breast fed, I managed to fast the full month with good preparation and knowing how to take care of myself whilst fasting.
With my 4th, I also fasted most days, and I gave fidya [feeding the poor for each day missed].
Supporting Breastfeeding During Ramadan
As peer supporters, we have great duty in supporting mums to feel empowered to achieve their goals by giving information so their decisions are informed. Supporting mothers during Ramadan is no different to helping mums reduce factors that may have a negative impact on their breast feeding or supply.
Things to consider are:
If a mum is fasting during the summer months (this usually an 18hr fast with 5/6hrs window to eat) she will need to drink little and often and during the times she is allowed to eat and drink.
Mums will need to eat high nutrient dense food such as date, fruits and nuts to help replace the magnesium, zinc and potassium levels that may reduce during fasting.
Avoid drinking too many caffeinated drinks and replace with water, fresh fruits juice, herbal teas and green smoothies.
If a mum is fasting during the winter months which can fall between 10/12hrs of fasting, this is much easier as the sunset is much earlier and they have a longer period to eat and drinking during dawn. So really its like having a very late lunch.
If a mum is exclusively breastfeeding and has a baby of 0-6months, its highly not recommended she fast at all, this is because of the increased nutritional demand. As I have done on many occasions, mums can make up the fast later or feed someone poor as a compensation but to also feel the spirit of Ramadan.
Some of the questions mums may have during Ramadan will be around supply and how best to protect it. Also, just as a reminder feeding support will not differ as the same information will apply when it comes to protecting supply and breastfeeding. Success in having enough to feed the baby depends on staying well hydrated, reducing stress and keeping breastfeeding as close/normal to when they are not fasting. If a mum is mix feeding, it’s important to give the usual information on how bottle feeds can impact the breastfeeding, as well as the fact that she maybe more likely to increase the bottle feeds to help cope with demand. It’s important she has the facts so she is aware of the possible risks.
We must remember to keep giving mum a safe space where they feel they have permission to come and talk through their decisions without judgment or fear of being misunderstood. This will help you protect the well-being of both mum and baby. Another question might be how do I know if I or baby are dehydrated? When should I seek help? It’s important to make sure a mum feels safe to come for support if her decision to fast has had an adverse effect on their health.
Muslim mums know they may be able to fast if theirs or their baby’s health is not adversely affected during that period of fasting. It’s good to remember they are well experienced in fasting and they come from a place of having knowledge of what its like.
For peer supporters who are not Muslim or who may not know much about Ramadan, it is imperative to keep in mind that choice should always be at the forefront of any breastfeeding journey and the support we provide will very much be based on an individual case by case basis. It’s also okay to say I’m not sure and signpost/refer mums to other sources for more information.
As part of World Autism Awareness Week, BfN and National Breastfeeding Helpline Helper Katrona draws on her own experiences to share some information about breastfeeding when you are on the autistic spectrum.
The term autistic will be used here instead of a person with autism because many people with autism (including the author) see it as part of who they are and not just something they have and therefore is their preferred term.
Thanks to the media, when people think of autism, they often think of stereotypical autism – male, non-verbal, rocking back and forth or stimming (repetitive movement) or being a savant (having special skills, like Dustin Hoffman in the film Rain Man).
Autism is not an illness, it just means that your brain works in a different way from the general population. It can mean that you have difficulty with social interactions and communication – it is said that up to 93% of communication is through body language, so it can be hard when you are depending on the 7% verbal component to understand what people are meaning when they speak. Sensory issues – your senses are too high or dulled meaning you experience touch, sight, sound too intensely or have trouble recognising and feeling changes in them. Autistic people often like order and certainty in life, have black and white thinking and can find comfort when the world follows logical rules.
Like myself, many females who are diagnosed with autism are diagnosed at a later stage of life instead of childhood, usually after they have had their own children.
So what has this to do with breastfeeding?
Well first of all females can be autistic, have children and breastfeed. Due to diagnosis criteria and the fact that from an early age girls learn to mask (changing your behaviour to fit in to what society deem socially acceptable) instead of a diagnosis of autism they are misdiagnosed with anxiety or depression. This may mean any challenges faced when breastfeeding are not addressed
The challenges faced by autistic breastfeeding mothers vary and can include:
Feeling “touched out” and “touch overload” being misinterpreted as a feeding aversion.
Interpreting touch as pain or having less sensation of pain and not realising damage is being done to the nipples.
Phrases like “you are looking for three dirty nappies a day and five wet nappies” – does this mean if my baby is peeing ten times a day or pooping after every feed is it a problem? Vague terms like “some mums may find” and “heavy nappies” can be confusing and cause over worry and anxiety.
Trouble taking in large amounts of instructions at one time or focusing on breastfeeding and reading detailed studies and both cause confusion.
There is a lot of uncertainly with babies, they don’t do what the books say they will, they change their routines and when your life is easier if there is an order to it and predictability, dealing with a new born can be very overwhelming. The lack of sleep and uncertainty can disrupt coping methods and exasperate the effects that autism can have on your life.
These can all be negative when breastfeeding with autism but there are plenty of positives as well. Breastfeeding can cut down on anxiety and worry – there is no need to measure formula out, make sure bottles are properly sterilised. Can help with mother/baby bonding by bringing a sense of normality to the mother, being able to do what neurotypical mothers do, and not feeling so different. Cuts down on sensory overload – the easiest way to settle a crying baby is to stick it on your breast, stops crying instantly, no need to wait for a bottle to be prepared.
Most of the challenges can be overcome or lessened by good communication with health care providers and supporters, thinking about the individual problems and finding new strategies and coping methods to address them. Many autistic women can be very determined, some may say stubborn but they know how much they can deal with and put up with. Understanding this and remembering if goals need to change, like the introduction of formula top ups, can be really upsetting to autistic mums but having research which they can read and study further can really help.
Some simple things like checking communication is going both ways, and finding strategies for coping, no matter how unusual they are can make a big difference to an autistic person’s breastfeeding journey.
Breastfeeding a baby with Down syndrome can sometimes present challenges, but with the right information and support, many can breastfeed successfully. As part of World Down Syndrome Day, here we present two pieces from mothers of children with Down syndrome. First, Sarah gives her tips on successfully breastfeeding a baby with Down syndrome. Then Alice gives some pointers to those supporting families of children with Down syndrome.
Sarah is a BfN peer supporter and mother to Zephaniah. Here she gives her ten top tips for breastfeeding a baby with Down syndrome. You can read more of Sarah and Zephaniah’s story on Sarah’s blog, Chromosomes and Curls.
So you have decided you would like to breastfeed your baby. There are so many benefits in breastfeeding and these can apply even more so to babies with Down Syndrome. Breast milk can boost your babies immune system and provide protection against numerous auto-immune disorders such as celiac disease, allergies and asthma to name a few. The act of breastfeeding itself will strengthen your babies tongue, lips and face which helps with future speech development.
Sadly there is a myth that babies with Down Syndrome cannot breastfeed and I’ve heard many stories of mums not being supported or being told their baby won’t breastfeed so not to bother trying by various healthcare professionals.
Whilst it’s absolutely possible for many babies with Down Syndrome to breastfeed efficiently and successfully, there are some factors that may arise which can impact on establishing feeding. Medical complexities, low muscle tone and lack of suck, swallow, breathe co-ordination are some of the additional challenges facing babies with Down Syndrome. As a result some mums will breastfeed with expressed breastmilk from a bottle/tube and others will move onto formula milk.
I have been a breastfeeding helper with the BFN (the Breastfeeding Network) for around 5 years and Zephaniah, my baby with Down syndrome, is my second breastfed baby. I had a pre natal diagnosis and one of my major fears and concerns was whether I would be able to breastfeed. Thankfully I was surrounded by wonderfully supportive people who reassured me that it would be hopefully be possible! We had a slightly rocky start and I had to express almost exclusively for the first 3 weeks whilst bottle feeding and using an ng tube whilst we were in the special care unit and in the first week or so at home. Zephaniah is now four years old and breastfed until he was 2.5.
Here are my top tips! I would love for any other breastfeeding mums (or dads) to share any of their top tips in the comments.
1. Find your support during pregnancy This is so important when pregnant with any baby. It’s something I learnt in hindsight after I had my first baby. The immediate post partum period can leave a woman feeling vulnerable, emotional, hormonal, physically in pain and sometimes the thought of trying to seek out where you can get support from can feel overwhelming. During pregnancy pop along to your local breastfeeding support group or La Leche League meeting and have a chat. Ask what support is available in hospital in the immediate post natal period. Have the breastfeeding helpline numbers to hand.
2. Colostrum Harvesting Speak to your midwife about harvesting some colostrum in the last few weeks of pregnancy. This is expressing and collecting colostrum. They can show you a correct technique and provide you with syringes to collect the drops in. This will be beneficial in the early hours/days if your baby struggles to latch straight away or needs expressed milk/supplementation.
3. Donor Milk Policies Talk to your hospital about their policies and availability of donor milk/milk bank if this is something you would prefer your baby to have over formula should you be required to supplement your baby with milk. Hospitals have different guideline that they follow so if you have something in place with them it will make things easier when the time comes.
4. Be prepared to pump There are many reasons you may need to express breastmilk for your baby. It could be that your baby is struggling to latch or it could be due to a nicu/scbu stay, or baby being too sleepy to feed. If you baby has a heart condition or other medical issues going on then they might tire easily. Whilst you are in hospital you should be able to access a good hospital grade double pump. There are some companies that hire out hospital grade pumps at home or you can use a high street brand electric or manual pump. Some babies with Down Syndrome will breastfeed with no problems from the beginning, others, like any baby, may take longer to establish effective, successful feeding. Some mums will decide to pump exclusively for their babies for whatever timeframe they choose to. I pumped for around 3 weeks with Zephaniah before he was effectively feeding at the breast. I know a mum who pumped for 5 months before getting her son to feed directly at the breast.
5. Be wary of the phrase ‘It’s a Down Syndrome issue’ Don’t assume or allow anyone to dismiss problems you are facing as being ‘a Down Syndrome issue’. As a breastfeeding helper I have seen many women with typical babies facing all sorts of difficulties when establishing breastfeeding. Position and attachment, tongue tie, sleepy babies, being pushed into formula top ups, and mis information and awareness of typical newborn behaviour patterns are common reasons for struggling and all of these same things can apply to you and your baby with Down Syndrome as well as some additional challenges your babies may face. The main additional challenges your baby may face is difficulty latching and feeding due to low muscle tone, taking longer to establish a breathe, suck, swallow routine, being more sleepy or tiring easily. If your baby has complex medical issues such as a heart defect or anything else requiring surgery then there may be pressure for your baby to gain a certain amount of weight in a specific timeframe and sometimes this can make establishing breastfeeding a challenge.
6. Comfort and support Low muscle tone in a baby can often make the baby feel heavier or floppy and more of a challenge to hold whilst breastfeeding. It’s important for your comfort, and your baby’s, that you are both well supported with good position and attachment. A suitable chair, a supportive breastfeeding pillow or your own cushions can help with this. Babies with low muscle tone will often brace their feet against something such as the arm of the chair to stabilise themselves and this can lead to arching which can impact on the positioning of the feeding. You may also want to give additional support to the babies head whilst making sure you aren’t restricting their movement.
7. Dancer Hand Position. This is a technique that can assist when a baby has low muscle tone. You start by holding the breast in the C-hold (thumb on top and 4 fingers underneath) but support the breast with only 3 fingers leaving your index finger and thumb free to hold the baby’s cheek on either side, forming a U shape with the baby’s chin in the bottom of the U. This keeps the weight of the breast off the baby’s chin and helps keep the head steady. This can really help your baby to maintain a good latch. In the early days of feeding Zephaniah he really struggled to maintain a latch and without adequate chin support he would slip off the latch frequently. I would always have to feed him with a muslin cloth underneath as he leaked so much milk out of his mouth. As he got bigger and stronger so did his latch.
8. Skin to skin. Make lots of time for skin to skin contact with your baby. This will help establish your milk supply and raise oxytocin levels. Whether you have a prenatal or post natal diagnosis, the immediate time after birth can often be traumatic and confusing. Your baby may be in the nicu or scbu where it can sometimes be more of a challenge to easily have skin to skin with your baby so it will need to be intentional. You may be feeling a variety of emotions and some mums may struggle to initially bond with their baby after having a surprise diagnosis. It’s normal to go through a range of emotions from sadness,to grief, to guilt, to anger and everything else in between. It’s also normal to not feel any negative emotions and have no issues with bonding, everyone is different and all feelings are normal.
9. Weight chart and red book. In the UK all babies are issued with a red book at the hospital which contains medical information and growth charts/developmental information. Make sure you are given the green Down Syndrome insert which contains specific weight/growth charts as babies with Down syndrome can grow at a different/slower rate to typical children. Your baby may seem to be on a lower centile on the typical graph which can lead to some health care professionals recommending top ups of either expressed breast milk or formula when it’s unnecessary.
10. Go easy on yourself and enjoy your baby Having a baby is a major event in anyone’s life and having a baby with additional needs adds an entirely different dimension on to that. Do what is best for you and your baby. Make informed choices. If you want to breastfeed and are struggling, try and find the right support and be patient as it can take time to establish.
If you are a mum who desperately wanted to breastfeed and have been unable to, know that you did your absolute best for your baby and you are amazing for giving it a go!
Alice works for the Portsmouth Down Syndrome Association, and is mother to Teddy. Here she writes about their experience, and gives some information on how best to sensitively support the families of children with Down syndrome on their breastfeeding journey.
I feel it’s important to start by explaining that I am not an expert in breastfeeding! I am a Social Worker and had chosen to specialise my career in working with people with Learning Disabilities. It wasn’t until my second son, Teddy was born, and then diagnosed with Down syndrome that I realised just how important and powerful language and knowledge is for everyone involved in supporting a family. I reached out to my local support group Portsmouth Down Syndrome Association (PDSA) when Teddy was diagnosed, and they supported my family from his diagnosis and throughout our journey to the cheeky 4-year-old he is now. I started to volunteer with PDSA and now provide education and training for Health and Social Care practitioners on all aspects of Down syndrome. It is important that families of people with Down syndrome have access to the support that they need and that this is delivered holistically.
Teddy was born by an elective c-section due to being breech. We had a blissful hour of skin to skin and Teddy was great at feeding, he latched straight away and ‘just got it’. After 24 hours in hospital recovering, both Teddy and I were discharged home (his diagnosis was missed) and we were eager to start life as a family of four. Teddy was brilliant at feeding and on day 3, we were rewarded with the fantastic news that he had gained 40g! However, Teddy’s subsequent weight gains were ‘static’, and he only gained 20g a day. Due to extended jaundice at 2-weeks-old we were seen in hospital by a doctor and consultant who suggested some screening and tests. I was grateful as had some feelings that all was not as expected with Teddy. One of these tests diagnosed Teddy as having polycythaemia (a high concentration of red blood cells in your blood). We were admitted to hospital the next day for ‘failure to thrive’. There was a suggestion that Teddy may be having difficulties getting milk, and that he may not manage with a bottle so would need a Nasogastric tube (NG). I was clear with the team that I wanted to continue breastfeeding, and so would express the ‘bottle top ups’ that they felt Teddy needed. As I had fed Teddy’s older brother successfully, I was quite confident in my ability to provide milk for him. I didn’t know what a NG tube was – but they weren’t doing that to my baby if we could avoid it!! We started the gruelling 3-hour cycle of alarms, feeding, expressing, and topping up. One nursery nurse was incredibly supportive. She sat next to me on the bed late in the evening and told me to ‘stand by my guns, and that if I wanted to feed, that I could and should’.
Slowly but surely, Teddy continued to gain weight, and so we were discharged 4 days later. At 3 weeks old, Teddy’s genetic bloodwork came back, and he was diagnosed with Down syndrome.
A few days later at a baby weigh clinic, I asked for support from a breastfeeding volunteer, I wanted to see if there was anything more I could do to help Teddy. I remember the volunteer asking my husband and I ‘how she could help’. It was the first time, that I had to tell anybody outside of our family, and health professionals that Teddy had Down syndrome. I was so very aware of the other mothers feeding their babies close by and found it difficult to speak. The volunteer was lovely and tried to support me but referred to Teddy as a ‘Downs baby’. I didn’t know how to tell her that Teddy’s diagnosis was only part of him – it didn’t define him. He was (and is) so much more than his diagnosis.
At home, we continued to ‘top’ Teddy up with expressed bottles of milk, but Teddy gained weight rapidly and so we limited these. Teddy was able to switch effortlessly between breastfeeding and bottle feeding – he wasn’t particularly bothered where his milk came from – as long as he had milk!
Breastfeeding was especially important to me. It gave Teddy and I a ‘closeness’, it helped me feel that despite a world of unfamiliar health appointments, invaded by complex health professionals and new medical language that I was doing something ‘important and normal’. Breastfeeding helped remind me that first and foremost, Teddy just needed love and milk- like all babies.
My tips to anyone supporting a family of a child with Down syndrome:
See the child first. Use positive, person first language, Teddy has Down syndrome rather than Down syndrome baby/child.
Congratulate that family on their newborn, as you would any baby – all babies deserve a warm welcome!
Signpost a family to resources like Julia’s way and their local Down syndrome support group for more guidance.
Encourage a family to advocate for how they wish to feed their child.
Many mothers of children with Down syndrome who had early issues report that their baby was breastfeeding successfully by 3-4 months of age.
Be aware that health conditions, a child’s tone or coordination may impact on their feeding, but different feeding positions may support baby better. For babies which may tire easily, it may help if milk let down happens before the baby latches. Ensure liaison with SLT if there are any concerns regarding aspiration.
Ensure that the family have a PCHR insert in their red book and so the baby is being plotted on a graph for children with Down syndrome.
In June 2020, against the backdrop of the worldwide protests advocating for an end to racial inequality on a mass scale, the Breastfeeding Network shared a statement on Black Lives Matter in solidarity against racism. It felt especially relevant for BfN to do this given our work with all mothers and our knowledge of the deep inequalities that exist for Black and Asian women in our maternity services highlighted in the MBRRACE report.
Here is that statement again:
Black breastfeeding matters
We stand alongside all Black mothers and families, and are willing to do anything we can to ensure mothers and babies get real change for the better.
At the heart of BfN’s values is empowerment of women, and none of us can feel empowered if we are raising our children with threat from racism.
As a charity we have always believed in social justice for mothers and babies, but often we have felt limited in what to do, in part due to our own ignorance – which is our responsibility to correct.
We hear our fellow Black mothers and families and we are committed to doing more – using our core values of empowerment, empathy and actively listening.
We are committed to learning and educating ourselves.
We will share and amplify Black women’s voices. We are here for you.
Since we made that statement, what have we done?
We have made the commitment publicly to push for anti-racism within infant feeding and across maternity and the early years agenda. We have done this through becoming a more visible ally to the people and organisations who give voice to anti-racism, including providing monetary support for Black Breastfeeding Week and promotion and awareness raising of the FIVEXMORE campaign in our communications.
Across the charity we have questioned ourselves and heard from others to understand our responsibilities to drive up equality and eliminate racist behaviour. While we, like many other breastfeeding support organisations, don’t consider ourselves to be racist, by virtue of the UK’s shocking inequalities we recognise that by remaining passive on these issues we perpetuate the same behaviours that allow racism to flourish. We all need to do more and given what we know about the inequalities that persist within breastfeeding we in particular actually need to do more than most to help correct this. We aim to drive up racial equality in breastfeeding by further committing to supporting ALL families to feel comfortable accessing our support, training, volunteering and working for us. This is at the heart of our work and we know that we can only truly achieve it by becoming a more representative and diverse charity.
So, informed by early work undertaken by volunteers on a working group in 2018/19, we have been asking ourselves …
What are the changes that we need to make?
Last summer we heard from many of our peer supporters out in communities who knew more than we did to understand how we can implement a lasting inclusion and diversity action plan for the charity.
Where we are now and, and what actions must we take?
Guided by the insights from the volunteer working group, Black, Asian and Ethnic Minority peer supporters from BfN, and colleagues from BRAP, we have mapped the areas and actions that we want to work on. Our Board-approved Inclusion and Diversity Action Plan will document change in the following areas:-
People we support
We have always recognised that some women face higher barriers to breastfeeding support. This is why we have and will continue to keep our training for mothers free. We have also always targeted our work in areas where breastfeeding rates are at their lowest. We routinely collect ethnicity data on our helplines and across our commissioned services but we don’t have a complete picture for our volunteers across the charity. We believe that increasing access to our training is key to building a more diverse charity. However, we recognise that even the act of volunteering is problematic for individuals and communities who are not able to afford to volunteer.
We provide a universal service meeting mothers on-wards, and we know that our home visits reach a diverse community, but many services are based at our community groups and attendance at groups is not representative. Through our action plan we are seeking partnerships with others to help us build representation across our community groups and drop-ins. We recognise that with a few exceptions the majority of the people we support across our helplines and in our commissioned services are white and we want to change this through encouraging wider access to our training. The charity has a tradition of offering minority language lines. We proactively maintain specific helpline support for Welsh, Polish, Bengali/Syheti women and families – and are able also to offer helpline support in various other languages, because of the diversity and strength in languages that our networks possess. While we see this as a strength it can also be a practical weakness as language lines rely on volunteers. We will proactively report on the take-up of our language lines and develop less volunteer-reliant ways of supporting families who require support in a different language.
While progress had been made to engage younger mothers with lived experience of breastfeeding on the Board as Directors there has been a clear lack of diverse ethnic representation on our Board of Directors for some time. In November 2020 we were pleased to welcome two new board members and there is an ongoing commitment to ensure strong representation on the Board to support effective decision-making.
Workforce and volunteers
BfN attracts a diverse range of candidates for jobs but we need to do more work to see if the people who get offered jobs are also representative and diverse. We commit to doing an employee survey in 2021 and benchmarking with other appropriate organisations.
We will also explicitly recruit staff from diverse backgrounds for a range of specialist and skilled roles across the organisation.
Training and Supervision
We are working with a partner to undertake a review of our Helper training and resources to ensure equality, diversity, inclusion and accessibility. This will be complete by February 2021 and then we will look to extend the review across the rest of our training resources over the course of the year.
Our commissioned work in Cheshire and Merseyside, where some trainees were recruited through the Black Mum Magic Project, will provide invaluable ongoing learning for our training. As the vast majority of our trainees are white, attracting, training and retaining women from more diverse ethnic backgrounds is a key focus of our work in many communities. We intend to offer targeted training to these communities independently or in collaboration with a partner.
We recognise that we have not done enough to help our workforce adopt and implement inclusive and diverse practices and to build knowledge and cultural sensitivity. In early 2021 we are training our tutors and supervisors in inclusion and diversity, we are doing this with two external providers – BRAP, an equality charity, and Vanisha Virgo, Mama and Me, who has trained with BfN. We will extend training on inclusion and diversity to all staff by the end of 2021.
We have reviewed our mandatory training requirements to cover training that is important to our volunteers and staff and this now includes inclusion and diversity training.
We are committed to diversity and inclusion being on all agendas – wherever we meet we will actively discuss and invite feedback and learning on diversity and inclusion. This includes our Board, manager meetings and meetings of our project leads, tutors and supervisors.
We are collecting and updating resources, policies and documents on inclusion and diversity and we will make these available for all staff and volunteers as part of the induction process.
The working group in 2019 guided us on changes that have largely been implemented but we want to do more. Our website requires an overhaul both in design, images and content and this is a goal to achieve in 2021/22.
Marketing and Communications
Our communications team do and will continue to ensure that our values around diversity and inclusivity are publicly demonstrated. This covers our newsletters, all social media channels, blogs, campaigns and printed materials.
Next Steps …
We are committed to taking lasting and ongoing action and progressing our plans publicly. We will share progress. We have dedicated resources within our team and a commitment from the charity to implement real change. We will work with partners and agencies to help guide us as we bring on these changes to ensure that the impact of the changes we make is evaluated and prove to be effective.
We are grateful to the many peer supporters in BfN from Black, Asian and other Minority Ethnic backgrounds who took the time to talk with us about their lived experience of our support, training and volunteering. BfN at its heart is a listening organisation and we believe that it is really only through listening that we can fully understand the needs of the women and families whom we serve. However, it is through action that we can really build trust and confidence. We welcome any other feedback, especially where you think we could do better. Please contact us email@example.com
Although this Christmas is likely to be a little different, it’s still worth taking into account how you can maintain your feeding “routine” (even if it changes every day!) in among the celebrations. Mastitis is a potentially serious condition resulting from blocked ducts when milk isn’t effectively removed from the breast(s). Here, IBCLC Lucy Webber explains how changes in routine can affect your feeding rhythm – and makes some suggestions on how to avoid “Christmastitis.”
Did you know that rates of mastitis go up around holiday periods? Why? Well, loads of reasons to be honest. Let’s picture it shall we?
It’s your first christmas with your baby. You’re mega excited and so is everyone else to have this gorgeous bundle in their lives. Christmas is going to be AWESOME.
Lots of travelling around in the car visiting friends and family, making the most of maternity leave to see everyone and proudly show off this little person, taking up offers to go over and be cooked for! And that is genuinely fabulous.
But all that travelling leads to lots of time in the car seat, and for most babies the car seat sends them to sleep. And long sleeps mean long gaps between feeds, which leads to full breasts with potential for blockages…
Then the parties, the gatherings, celebrations! Lovely right?! Yes! Except everyone wants a hold of little baby Rupert and once again he has longer stretches between feeds. And when he does come back to you he’s over stimulated and over tired and only takes two minutes on the breast before he falls asleep leaving you with, you guessed it, full breasts….
Or the guests seem to think they know better than you do about baby Josie’s feeding cues and tell you she doesn’t need feeding, they can settle her for you. They talk about how ‘when they had babies you only fed every four hours and it didn’t do them any harm’. You’re then stuck between a rock and a hard place, because you would like to feed your baby, but you don’t want to upset family or the way they did things, and maybe they’re right?
Feeds are often cut short around celebrations, because you have lots of people offering to help and hold the baby so your dinner doesn’t go cold, or guests arrive, or you’re due somewhere, or you’re upstairs feeding and want to get back down to the party…the list goes on. So your breasts don’t get ’emptied’ like usual and can you guess what happens next? Yep….
Maybe you don’t feel comfortable feeding around Auntie Ethel and Uncle Bernard, so you don’t quite expose your breast as much as you might normally, and your clothes/bra are digging in a little and restricting milk flow and cause a blockage…
Maybe you’re sleeping somewhere different, the bed is different, you can’t quite get the angle of the feed right on this squishy mattress and the latch goes a bit dodgy, but you put up with it because you don’t want the baby to cry and wake everyone. Dodgy latch leads to breast not emptying efficiently…and you know the rest.
Christmas is lovely, but for a huge amount of people it’s also very stressful. Stress hormones can impact on oxytocin, which is the hormone needed to let your milk flow. So stress can temporarily inhibit milk flow leading to those full/blocked breasts again.
I might be coming across as a bit Bah, Humbug! but I’ve been around enough mothers with mastitis to know its REALLY not what you want to be dealing with at any point. It is not to be messed with, it is a serious condition and you can potentially end up very poorly.
What I’m saying is, take it EASY. Plan ahead now to make sure this holiday season is one where you can feed whenever and wherever you need to. Be led by your baby. Don’t stretch out or cut short feeds.
Listen to your body, not Auntie Denise.
You can find out more about mastitis, what to look out for and how to avoid it, in our factsheet here.
This post was originally published on Lucy Webber’s social media feeds and is reproduced here with her permission. You can find her on Facebook and Instagram.
Helen Ball has been researching the sleep of infants and their parents for 25 years. She conducts research in hospitals, the community, and her lab, and she contributes to national and international policy and practice guidelines on infant care. She is a Board Member of ISPID (the International Society for the Study and Prevention of Infant Deaths), Chair of the Scientific Committee for the Lullaby Trust, and Assessment Board member for Unicef UK Baby Friendly Initiative. In 2018 Durham University received the Queen’s Anniversary Prize for Further and Higher Education for Helen’s research and outreach work.
In her talk at this year’s BfN Conference, Helen will provide an overview of her latest project to develop and trial a support intervention for parents who may be struggling with infant-related sleep disruption or post-partum fatigue. Here is a brief abstract of the project to whet your appetite!
Disrupted parental sleep, presenting as post-partum fatigue and perceived as problematic infant sleep, is related to increased symptoms of depression and anxiety among new mothers and fathers. Previous research indicates that UK parents would value an approach that facilitates meeting their infants’ needs while supporting their own sleep-related well-being throughout their infant’s first year.
Six initial stakeholder meetings were held with 15 practitioners and 6 parents with an interest in supporting parent-infant sleep needs, to explore existing service provision and identify gaps. The Possums Sleep Program, developed and delivered in Brisbane, Australia in a GP clinic setting, was chosen as an appropriate approach.
Working collaboratively with a stakeholder group, we translated the Possums Sleep Program into an intervention that could be universally delivered in the UK via NHS antenatal and postnatal practitioners. Parent and practitioner views of the initial materials were obtained via feedback questionnaires and the tool was revised. The intervention was then field-tested by 164 practitioners who delivered it to at least 535 new parents and babies over 5 UK locations, to capture anonymous parent and practitioner views of the intervention concept, the materials, and their experiences with both.
The intervention helps parents recalibrate their expectations of infant sleep development, encourages responsive parenting and experimentation to meet their infant’s needs, offers parents strategies for supporting the development of their babies’ biological sleep regulators and promote their own well-being, and teaches parents to manage negative thinking and anxiety that can impede sleep using the principles of Acceptance and Commitment Therapy. The ‘Sleep, Baby & You’ discussion tool, a 14 page illustrated booklet for parents, was field-tested and evaluated by practitioners and parents who offered enthusiastic feedback.
Practitioners reported the ‘Sleep, Baby & You’ materials were easy for them to explain and for parents to understand, and were a good fit with the responsive parenting approaches they employed in other areas of their work. Parents who received the intervention postnatally understood the material and found the suggestions easy to follow. All parents who provided feedback had implemented one or more of the suggested changes, with the majority of changes (70%) being sustained for at least two weeks. Practitioners recommended development of digital and antenatal versions and offered feedback on circumstances that might challenge effective uptake of the intervention.
‘Sleep, Baby & You’ is a promising tool for promoting parental attitude and behaviour-change, that aims to adjust parental expectations and reduce negative thinking around infant sleep, promote responsive infant care in the face of infant-related sleep disruption and fatigue, and support parental well-being during the first year of parenthood. Initial field-testing provided insights useful for further development and subsequent testing via a randomised trial. Support exists for incorporating ‘Sleep, Baby & You’ into an anticipatory, universal intervention to support parents who may experience post-partum fatigue and infant sleep disruption.
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