The BfN Central Evaluation is conducted every year. Its purpose is to help us to understand what we are doing well, where we can improve and also give us the evidence we need to secure future funding.
The 2021 evaluation survey was launched on 1st March 2020 and we received 318 responses in total (due to the pandemic, we received significantly less responses, which we expected)
2021 BfN Results Summary:
88% of the responses came from breast-feeding parents, 6% from Health Professionals and 6% from family, partners or others.
26% of respondents were supported by the BfN Drugs in Breastmilk Service, social media chat support gave us 24% of the responses and our National Breastfeeding Helpline 6.5%.
Other BfN Project areas also had a high response rate – as expected – and the Project Managers will receive and localised project evaluation report to share with their commissioners, staff, volunteers and local families.
When asked about their first contact with BfN, 8% of respondents said they had support from BfN before their baby was born. The highest ‘first contact’ bracket was the 3-6 week age bracket (18%) then the 7 week – 3 month age bracket (14.5%), and 12% in at 3-6 months. 10% of first contacts were when their baby was 2-4 days old. These timings reflect the usual periods when breastfeeding parents need specific support.
For the last two years, 64% of this year of people contacted BfN because they were experiencing breastfeeding problems. This year the figure rose to 72.5% – reflecting the need for support during lockdown when other avenues of care were reduced.
When asked the ways they had contact with BfN (ticking all that applied) 40% reported they had used our website for information and 31% spoke to a Supporter on the telephone. 30% had support from our social media chat team and 31% requested information from the drugs in breastmilk service. Home visits rates dropped from 27% last year to 8% which is understandable, but our new virtual/video breastfeeding groups were attended by 26.5% of responders. 14% had a 1-2-1 video call with a peer supporter.
Our virtual/video groups and calls have proved so successful we are planning to keep some going even when face to face groups can begin again: 28% of participants said they would be keen to attend both virtual and real groups and intend to continue with video support calls.
What respondents told us about accessing virtual support:
“Liked the video support. Really convenient because I didn’t have to try and leave the house with a baby!”
“Now and then I have missed the interaction but the support received especially thorough zoom has been amazing”
“Very useful to have at least the video calls if can’t in person. I would have felt so lost and alone without this”
Once again – the most popular topic of discussion with BfN Peer Supporters was positioning and attachment for feeding at 57% with 45.5% of people struggling with painful breasts and nipples. 33.5% of parents asked for information about medication/medical intervention and impact on breast milk/ breastfeeding.
The next common topics were baby’s weight gain and expressing milk – exactly the same topics as last year and the year before. 20% of people talked about their mental wellbeing or mood.
We hope we were able to ensure all these parents were able to continue feeding their babies if they wished to. A new topic this year was Covid with 19% of parents reporting that they asked about the safety of breastfeeding with covid or when being vaccinated.
As in previous years, we asked a variety of ‘before/after’ questions and were delighted with the answers, which proved the value of peer support:
60% agreed they had the information needed to make decisions about feeding their baby before contact with BfN, rising to 90% after support from BfN.
40% of breastfeeding parents could breastfeed without pain before contacting BfN, increasing to 75% after peer support.
Some other highlights from these ‘Before & After’ statements include:
Before BfN support
After BfN support
I felt confident about making choices regarding breastfeeding
I had people who could give me support with breastfeeding
I felt part of a group / network / community that supported me with breastfeeding
I felt able to continue to breastfeed for as long as I chose
I had information on what support was available for breastfeeding in my local area
I felt lonely and isolated on my breastfeeding journey
Nearly than half of respondents claimed that BfN supported them to breastfeed for longer than they otherwise would have done. Reasons given for this included evidence based information about medication, information about attachment and finding a pain free position, expressing milk, managing blocked ducts and mastitis, knowing what is ‘normal’ new born behaviour and that it is possible and beneficial for older babies and toddler to breastfeed.
There were also lots of comments about general support, practical suggestions, building confidence and encouragement, feeling listened to.
90% of parents said they felt listened to, that their choices were respected, the support/information they received was specific to them and they did not feel pressured to do any particular thing.
96% of families were satisfied with the support they received from BfN and 95% would recommend us to family or friends.
Comments from respondents:
“I have just qualified as a Peer Supporter. Inspired by the support I received after the birth of my first child.”
“Positive support and made me feel more confident with my decision to breastfeed.”
“I find your medication fact sheets extremely helpful and regularly use them to inform discussions around breastfeeding and medications with my patients.”
“Thank you for your help at a tough time last year!”
“Made me feel confident to go forward on my breastfeeding journey.”
“The most valuable service in my opinion. Please pass on my thanks.”
“They were more understanding and had time for me”
“Felt like a friend talking to me”
“Time, and gentle manner”
“It was also reassuring to know that someone else had experienced the same problems as me.”
“No judgment or pressure”
“Easy to access at any time of day”
“They knew what they were talking about using a hands off demonstration approach”
“They listened to me. They listened to what happened during my birth, to how I wanted to feed my baby and to my concerns at the time. They offered kind and practical support and gave me all the time I needed to talk”
This week our Community Champions Cleo and Ash have really stepped up their Move in May efforts. Despite the rain, both families have continued to be an inspiration to us all. Today they are shared more about their efforts as we near the final week of Move in May.
It’s been a funny old May. So different to last year (mainly the weather) but we are as committed as ever to our family Move in May challenge. We’ve mainly been walking this year (in the rain!) with me chasing the children on their bikes. I’d love to put some more minutes in on my own exercise bike, but all that running is certainly boosting my fitness level.
This year the children are older, so we’ve managed some lovely long afternoon walks without them complaining to be carried, or go home. Victory! Public transport is now an option for us too, so we’ve had outings to new green spaces which has been a huge boost to mental well-being.
The kids really are an inspiration. They just love running and jumping about whether in the back garden, park or making “sand angels” in the local sandpit. We’ve been really happy to see the sports clubs reopen too, meaning that has helped, Zara and Joshua have been colouring in the Miss Milk for cricket and gymnastics after school clubs this year.
The children are loving the Milk Family again this year. I read them all the new characters’ details once at the start of the month and I’m impressed how they still remember each name. They keep reminding me who likes yoga, running around, and which are the milk twins!
Sadly, the wet weather has meant fewer options, but one rainy Saturday morning I found myself dancing with Zara to Channel 5’s Bop Box Boogie. I have to admit it was satisfying learning the routine! Hopefully next week will bring us some sunshine. We can only live in hope.
This week’s Move in May has seen sunshine, rain, and hail! Our walks have revolved around puddle jumping. One afternoon, my toddler jumped in so many puddles that by the time we got home, his socks were soaked and toes wrinkly! We’ve also enjoyed avoiding or walking on pavement cracks, and taking the longer route to destinations when time allows.
Even though my children are now 3 and 4 years old, I’ve joined an affordable postnatal exercise class run by a physiotherapist. The classes are super fun, and helping to keep my pelvic floor and abdominal muscles in check. Each class is only half an hour long, but by the end I’m as wet from sweat as my toddler was from jumping in all those puddles!
Looking back to the start of this challenge, I’m definitely noticing small differences in how my body and mind are feeling: I’m sleeping better, I’m eating and drinking more, and my jeans are fitting a little better around thighs that are growing stronger. I can’t believe we’re soon entering the final week of Move in May!
Move in May is underway! In our household, May is a busy time of year and this month is no exception. I’m currently in the middle of exam and essay season at university, my partner’s clinic is full, and our youngest child joined our eldest at nursery. Without the Breastfeeding Network’s challenge to keep our bodies moving, I would definitely be ending each day, every day, slumped in a heap on our bean bag!
My most significant change since starting Move in May has been switching driving for walking wherever I can… Even if it’s raining. So not only am I getting my blood pumping, I’m also helping the environment and saving money. I picked up a second-hand hopscotch for us to play indoors, which went down a treat one rainy afternoon.
During online lectures where we’re just required to listen and learn, I’ve taken to stretching on my yoga mat, instead of sitting at my desk for hours on end. And my biggest achievement? I tackled some cardio for the first time in months!
Sailing has not always been plain though and one day a strong headache knocked me off my feet. Whereas I would normally hide under a duvet in the dark until the pain had passed, I attempted some “Yoga for Headache Release” in my pyjamas (thanks YouTube!). My partner took our little people out for a long walk, so I even had a few hours of recovery in the peace and quiet too.
I hope you’re enjoying the Move in May challenge. Let me know how you’re getting on and what you’re trying!
I’m Cleo and I live in Islington, North London with my husband and two children Zara and Joshua.
We are Move in May Community Champions. Our role is to help spread the word about BfN’s Move in May campaign and to share our experiences to encourage other families to get involved. We’re excited to be involved again this year because we know just how important the work of BfN is to families getting the support if/when they need it along their breastfeeding journey.
We have fond memories of Move in May 2020 and that’s why we jumped at the chance to take part again this year. Last year we had just gone into lockdown, we had a lot on our plates at home with work and childcare, we were missing friends and family and just needed to inject some positivity. Taking part in Move in May really helped us physically and mentally during that time of uncertainty.
We really enjoyed the experience of completing Move in May 2020 and the children can’t wait to find out what the Milk Family have to offer this year. It will of course be different in 2021 now that restrictions are lifting, but we still plan to take part and do something every day.
For us, success was in the simplest things last year. Often we would go for a walk or ride to a park, or do a kids yoga session if it was raining. Other days we would do something active like shuttle runs. We tried to mix things up to stay motivated – and it worked.
My childrenparticularly enjoyed using the printable daily activitytracker and colouring it in after they achieved their goals each day. At the end of the month I surprised them by putting a puzzle, game and a book in an old delivery box along with their completion certificates. The children were convinced that it had all been sent by Miss Milk herself to congratulate them!
We look forward to sharing more about our Move in May journey with you again this year.
My name is Ash, I’m a parent of two youngsters, and I’m taking part in this year’s Move in May campaign!
Deciding to get involved and get moving with The Breastfeeding Network was an easy call to make. Last spring, my partnerand I were unwell, and the Move in May campaign was just the incentive we needed to get back on our feet.
We started small. Jumping in puddles. Pottering to the park next door for a round of Pooh sticks. Gently stretching before bed. By the end of the month, all four of us (plus our dog!) were chasing each other round a field with a rugby ball!
The winter lockdown took its toll on our family, and we know we’re not alone. Those months were tough.For us, a combination of working in clinical practice, preparing our firecrackers for pre-school, and moving housemeant that exercise was just, well… completely forgotten.
When I saw an advert on Instagram for this year’s Move in May campaign, I realised just how long it had been since I’d been active outside of dashing around a hospital ward.
This year, our family will have lots of options for activities as lockdown restrictions continue to ease. When the doors re-open to our local farm park, I’ll be first in line for their Giant Jumping pillow! (Sorry, kids!) I want to get outside and for my children to play tag with my friends’ children. I want to teach them how to ride a bicycle. I want to shed the guilt I feel when I do prioritise the exercise that I know my body needs. And I want to feel healthier, stronger, and ready for whatever the rest of the year may bring.
The Breastfeeding Network have lots of ideas for daily activities you can try and they don’t cost a penny. If you sign up to take part, you’ll receive weekly motivational e-mails packed with more ideas and tools to keep you motivated.
If you want to connect and spur each other on, come find me on Instagram: @oh_anotherstudentmidwife. Let me know how you’re getting on!
NCT and the Breastfeeding Network, in collaboration with an alliance of supporting organisations and in consultation with Public Health England, have today released a new guide to re-starting support services for expectant and new parents during Covid-19.
The guide provides a set of principles and considerations for organisations to work through so that they can restart their face-to-face support services safely and with confidence.Covid-19 and the prolonged period of social restrictions have had a huge impact on the lives of pregnant women, their partners and families with new babies.
Reduced access to pre and postnatal community support, restrictions in access to maternity care for partners, limited face-to-face support with breastfeeding, fewer possibilities for practical and emotional support from friends and family, financial insecurity – combined with high levels of misinformation about the virus and vaccine programme – have left many families struggling to cope. Some groups have been disproportionately affected, widening inequalities that already exist.
The role of third sector organisations, charities and academics supporting early parenting has been crucial in adapting and strengthening support in a socially distanced time alongside building up evidence. The sector is also fulfilling a powerful role in providing a ‘voice’ for parental experience to ensure attention on these issues and that critical resources are applied in the short and longer term.
As restrictions ease, our sector has the commitment and capability to ensure community support thrives. Collaboration and shared learning will be more important than ever, and we are grateful to all of the individuals and organisations who have contributed to the principles set out in this guide.
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
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