Message from a breastfeeding "support" group

[Sultanawana]

Back in September, I commented on a post on a breastfeeding support group. The mother was asking if anyone for advice for a jaundiced baby not gaining weight and mentioned using formula top-ups to help. I commented that I had given very small formula top-ups to my own baby who was not gaining weight at the time and in hospital for severe jaundice. This was advice given by a medical professional. After posting, I was then met by an indirect reponse from admin stating that they would not advocate the use of formula and directed anyone who did to read their conditions, even though the mother seemed to be wanting support with deciding to give a little formula.
I replied that this was wrong and that the mother in question was feeling huge pressure and couldbe looking for someone to say "yes we gave a bit of formula and it worked out ok." Which it did for us as I breastfeed solely at 5 months. It actually saved my baby's health and our breast Feeding journey.
Not only did I received the following response but I was banned from the group for a period of time. I was gobsmacked. Censorship of this nature just seems absurd to me. Surely, "support" of this militarian nature is counter productive? The "support group" was "can i breastfeed in it support group" on facebook. Here is the response I received:

Dear sultanawana

You’re a very passionate breastfeeding mother and you’re committed to helping and supporting other mothers in their breastfeeding journey. You had a difficult start and had to top up with formula with the advice from healthcare professionals.

Unfortunately, CIBII BS group is a “peer support” group. As trained breastfeeding peer supporters, we can not advocate the use of formula for a breastfeeding problem, but have to explore all other avenues first; this would be outside our remit and can only be suggested by a HCP or an IBCLC and closely monitored. We would be breaking WHO code and the guidelines we adhere to which would then contravene and invalidate our insurance to be able to offer free support to our members.

If a mother was still experiencing difficulties, we would have a duty of care to refer them to an IBCLC/BfC for more in-depth support, which mum may be encouraged to top up with expressed breast milk, possibly donor milk and/or formula to help with weight gain whilst the causes were being investigated.

We appreciate your generosity of your time in responding to the OP and thank you for your understanding in helping us keep the group running smoothly according to our ethos and rules.

Kindest regards,

I was then banned from commented on the group! What are your thoughts?

Bloody Hell

That's shocking

Now that's what you call Breastapo

@brookshelley I sadly have seen this with another baby admitted to the high depending ward of special care when DD was there. Both laid there silent, floppy and 'asleep'. Staff asked for my husband's consent for a load of different things as they worked on her and of course he said yes, do what you have to do to save our baby. As I made my way down in a wheelchair the nurses were panicking and talking to the doctor because the mother of the other baby had refused consent to give formula. They didn't know what to do as he was newborn and she hadn't been able to express. Now I'm not saying it's common but it is something I witnessed and I was shocked by that stance. If your baby is healthy then of course do what you want to get them feeding but if your baby is poorly the formula is poison stance can be devastating. I don't know what was wrong with the baby but DD was discharged and he was still in high dependency. It does happen.

“the mother in question was feeling huge pressure and couldbe looking for someone to say "yes we gave a bit of formula and it worked out ok”

This is the key bit - breastfeeding supporters of any kind shouldn’t be giving any guarantees that anything “will be ok”, nor should they be giving mothers “permission” for anything. That’s probably what made them wary, though I think banning you was very extreme. Mothers need all the facts with which to make their own decisions and in the case of a medical condition, that’s especially important. Parents need to feel they can make their own decision about how to proceed.

We just don’t know from a discussion on the internet whether a bit of formula is ok for every individual baby (loss of breastmilk supply, dairy allergies, a home where bottles are not prepared correctly) but of course we know it’s ok for most babies. Therefore the language used on these groups has to tread a fine line.

blackcat86 that's a sad situation but without knowing the mother, her baby's condition, and her reasons for refusing formula, I don't think you can say she thought "formula is poison" or was influenced by some extreme breastfeeding groups. We have no idea. And we also have no idea if the child is completely healthy now or was damaged by her decision. So it's a very incomplete anecdote that you've used to jump so some massive conclusions - unfairly in my opinion.

The number of "extreme BF militants" is very small in my experience. And I attended LLL regularly throughout my maternity leaves.

This is the key bit - breastfeeding supporters of any kind shouldn’t be giving any guarantees that anything “will be ok”, nor should they be giving mothers “permission” for anything. That’s probably what made them wary, though I think banning you was very extreme. Mothers need all the facts with which to make their own decisions and in the case of a medical condition, that’s especially important. Parents need to feel they can make their own decision about how to proceed.

I strongly agree with this. I'm in one mum's group and someone has been advocating supplementing infants under 1 with a plant milk, because her GP recommended it. Turns out the child has some specific health issues and so in that individual case, that might be the right choice. But it isn't for other babies. And now a lot of the people in the group all want to switch to plant milk. In a better moderated group this topic would be shut down.

I think advocating the use of something is different to saying, 'this is my story, this is what we did....' which is what a lot of mums seem to be asking for from other mums. Stories of what they did. And this is all I did, relay my own story.

I responded that I thought their 'guidelines' were very dangerous. Of course breast is best and the most natural thing in the world, but in nature, nature can fail easily... we see this in other animals. I think too recover from a bad start through the use of formula and then continue with nature's milk is a great outcome.

I too think that the group should be named 'breastfeeding' only. Support comes in many forms, but it seems only one form is acceptable in this group. They need to be very careful in the advice being given... a mother could feel anxious about receiving donor milk or contacting anyone else for support. Advice on With-holding formula for a poorly baby who wont feed in a mum who is anxious to seek practical help could be so so dangerous.

As a peer to peer supporter discussion of formula is tricky. To stay within WHO guidelines I can’t discuss formula in a group situation(eg Facebook) but I can give support and guidance in a one to one setting. There are lots of reasons for this but primarily it’s to ensure formula is used safely. I regularly support mums who are breastfeeding and use formula, I’ve more than once supported a mother to stop breastfeeding and move to exclusively formula feeding.

What we can do as peer supporter ( which WHO classify at health workers) sufferers depending on the situation.

Differs not suffers stupid autocorrect

My newborn was in hospital just a couple of weeks ago at 4 days old after a 14% weight loss and severe jaundice. The hospital advised formula. It was BEST for her. My supply was so lacking despite expressing 10 times a day, giving expressed top ups and feeding constantly (I also struggled with supply with my first two).

It is MADNESS that any group would risk a babies life like that. Out of interest, what were the other suggestions being made?

I have a friend who is a qualified breatfeeding peer supporter. She's been helping me since dd came out of hospital. I've followed every step of her advice and here I am still not able to provide enough milk and needing to supplement mainly with formula. Sorry but breast might be best but it's not always going to be suitable.

@Sultanawana they should probably change their name, but I still don't understand why you are holding a Facebook group to the standards of advice from a health care provider.

If someone's baby is poorly or not gaining weight, it is MADNESS to look to Facebook for the solution - let alone only one Facebook group at that.

I’m a nurse and see a lot of newborn babies admitted with weight loss due to breast feeding difficulties. The doctor’s response is to throw formula at them and it really grates on me because sometimes it’s necessary but more often than not, it isn’t.

On the flip side, I belong to a Facebook group for breast fed babies with dairy intolerance (as my baby is CMPA) and the vast majority are very anti-formula. I have seen women post photos of their babies who are 6/7 months of age who are practically skeletal but the mum is adamant that it’s fine because “mumma’s milk” is best as opposed to dairy-free formula. I have honestly looked at some photos of these babies and thought it bordered on neglect/abuse.

Formula definitely has its place but it shouldn’t always be the go-to when it comes to addressing breast feeding difficulties.

QueenofmyPrinces I was in that situation and was moved onto formula by the doctors. Out of interest, in an ideal world (with adequate funding, staffing etc) what would be alternative steps rather than introducing formula at that stage?

I had lots of access to support but it was all contradictory and confusing and for whatever reason, breastfeeding just wasn’t working for us. I remember being in the postnatal ward and buzzing for help with feeding but the support worker that came just told me off because my baby was asleep and to stop wasting her time. I tried to tell her that she had woken and had gone back to sleep without being able to feed and had gone hours and hours without anything but I was ignored. I called my husband in tears as I knew something wasn’t right and he came back to the hospital at 3am. The doctors then put us on a 21/2 hour feeding regime of breast feed, express and top up with formula/expressed milk as they were concerned about her lack of feeding. I tried that for 2 weeks (with daily visits for support/weighing) but you could see that she wasn’t feeding well and it was really distressing to see her move from angry to listless. Once she had the formula she was fine but it took a lot of effort to wake her to get her to feed because she exhausted herself trying and failing to breastfeed. She was a different child once we moved fully to formula.

I still wonder whether I’d have been able to carry on giving her breast milk for longer if there had been more specific support around mixed feeding/expressing.

I’m a nurse and see a lot of newborn babies admitted with weight loss due to breast feeding difficulties.

Can you define "a lot?" 1 baby a month? 10 a month?

I just have no idea how common this is but I hear it mentioned so often as if a large portion of BF babies are malnourished.

User147
A couple of things could help in similar situations. Continuity of care for breastfeeding including access to IBCLC. Access to donor milk. Better education for doctors and midwives around breastfeeding. Glucose supplements/IV as first line rather than formula.

Going against the tide here, but I felt the message that the OP pasted from the group admin was measured and fair. They aren’t medically qualified and so don’t know when formula is medically indicated. So they don’t allow discussion, as it might be poor or even unsafe advice given to vulnerable mothers and babies (not to suggest OP’s advice was unsafe, but others’ might be).

A ban seems harsh, but the admin’s message was reasoned and polite, and I can understand her need to make sure no babies are harmed by crowd-sourced advice on medical issues.

brookshelley - as an average I would say our department probably sees about 100 babies a month who are sent in by midwives and about 75% of them will be admitted.

user147 - sadly in terms of getting the right support it really is pot luck. The outcome of the situation ending in breast feeding or bottle feeding is hugely dependent on the specific staff member you have looking after you.

Some staff are inherently better st providing correct breast feeding support in order to avoid formula, whereas other staff don’t have the correct knowledge and see formula as a quick fix which usually ends up in the babies being fully formula fed at some point.

It’s a huge disservice to women and one that upsets me really. A woman’s desire to breast feed and the ability to do so shouldn’t be dependent on which staff are working that day.

Going against the tide here, but I felt the message that the OP pasted from the group admin was measured and fair.

So do I - I think the rules of the group are unreasonable (though if it is a WHO requirement of breastfeeding support then what choice do they have?), but OP did break the rules, and they explained politely why that was. The ban seems disproportionate, though.

I think it's actually better that those groups remain entirely single purpose, as long as they direct people elsewhere as they said they do. It drives me a bit mad when my local LLL group has discussions of general parenting issues as they get dominated by quite extreme attachment people - which is absolutely fine for them, of course, but it can make breastfeeding seem like it's only for those kinds of mothers, like it's a cult not a way of feeding a child! I actually think my local sling library has the same problem - just let me rent a sling without telling me that my child must cosleep until 3 or I'm damaging their brain!

as an average I would say our department probably sees about 100 babies a month who are sent in by midwives and about 75% of them will be admitted.

And these are all breastfed babies who are losing weight or failing to thrive?

I think it's actually better that those groups remain entirely single purpose, as long as they direct people elsewhere as they said they do. It drives me a bit mad when my local LLL group has discussions of general parenting issues as they get dominated by quite extreme attachment people - which is absolutely fine for them, of course, but it can make breastfeeding seem like it's only for those kinds of mothers, like it's a cult not a way of feeding a child! I actually think my local sling library has the same problem - just let me rent a sling without telling me that my child must cosleep until 3 or I'm damaging their brain!

100% to this. I have exclusively breastfed but my children went into their own rooms, I hate cosleeping, and I weaned before "natural term weaning" which seems to keep rising from 2 to 3 to 5 to 7 each time I attend LLL. I hate the way BF, attachment parenting, and baby-led weaning have been rolled into on package somehow.

brook - they are all breastfed babies who are admitted at about 5 days of age due to weight loss, jaundice and sometimes dehydration.

They usually present at 5 days old but we have some admitted who are as young as 2-3 days old.

As milk doesn't come in until day 3 usually - what do you think is the issue? Are the mothers not putting baby to breast often enough to stimulate production? Because you said that formula isn't always the answer. But if a baby is malnourished on day 5 that means mum doesn't even really have much colostrum or anything right?

I known the milk doesn’t come in until 5 days or later, but in successful breast feeding the colostrum is easily able to maintain weight as it’s so full of calories.

The reason we see them is down to numerous factors which all lead to unsuccessful breast feeding from the start:

Poor education prior to birth.

Too quick a discharge after birth.

Time restraints on the maternity wards that mean mothers aren’t taught how to breast feed properly.

Poor knowledge of what a good latch actually looks like and what it means.

Lack of knowledge about the symptoms of tongue tie.

General poor understanding of typical breast fed babies feeding behaviours in the early days.

When they come to our ward I am frankly horrified at the tales they tell me about the ‘support’ they received on the Maternity wards.

Unless a baby is severely hypoglycaemic or jaundiced to the point of needing phototherapy then I always assess the feeding, address the problem and continue to allow regular breast feeding (under close monitoring) as opposed to giving formula.

In terms of poor supply of colostrum, only regular feeding is going to improve that - giving formula has the potential to just make the problem worse.

‘The ‘WHO code’ was only direct at mothers feeding in developing countries where feeding formula can be dangerous because of unsanitary water supplies you dumb twat. You have based everything you do in a false premise.’ Is the correct response to that email.

QueenofmyPrinces that is really sad to hear. Glad there's someone like you to try and help although it comes far too late for some of these babies!