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?

Do you know what, breast is NOT best. Informed is best. Informed and educated, that means being given all the information there is about all the choices there are to make the decision that is best for you & baby in your circumstances.

Censorship like this is terrible and, imo, harmful.

Fair enough, they're a breastfeeding support group, but where's the support if they don't give a balanced answer?! They should rename it to "breastfeeding only group".

It really angers me.

I got warned for something similar on there, think it was about a baby with d&v and giving electrolytes, I left rather than waste any more time. But sounds like they've got more militant since then. I'm a very ardent bf supporter, fed my babies until over two etc etc, but I can see sometimes it is better to just refer straight to hcps. Bf is great, but it's not the be all to end all, and some advice is well meant but poor.

I'm on a breastfeeding Facebook page. It's explicitly their number one rule that they do not endorse formula, and that "fed is not best". Too extreme for me. DD is six months and ebf, but I think formula is wonderful stuff (and I bloody wish DD would agree!).

I think their response is OTT.

I had a similar experience to you - jaundiced baby given formula top ups under medical advice while in hospital, being treated for jaundice, before my milk had come in (so expressed breastmilk not an option initially). Once baby had recovered from the jaundice we moved onto exclusive breastfeeding, and continued well past 12 months.

I’ve posted about this before on a FB breastfeeding support group I’m on (a different group to yours!) usually in response to mums asking for experiences with jaundiced babies or mums worried that any formula top up will mean the end of any chance of breastfeeding.
Other women who’ve been in similar situations have also made similar comments.

The admins have never given me any bother for commenting about my experiences with formula top ups. Some of the admins have also agreed that formula top ups can be appropriate in certain circumstances.

So I don’t really see a problem with what you commented.

They’re barking mad bordering on dangerous, making desperate women feel like starving their babies is preferable to formula.

That doesn't sound like a support group to me sounds like a dangerous dictatorship!

You were right with your response, personally I would leave the group but not without messaging the mother to say do what is best for your baby, being jaundice is not good for any child.

I’m a member of this group and they are usually very supportive, but they do adhere to their policies very strictly on this and all the sister groups. I think their stance comes from the fact that a lot of mums are advised to give formula top ups without any investigation into why weight gain is slow (eg breastfeeding issues like poor latch, tongue tie etc). That said I don’t see how your comment warranted a “muting “, especially as you went on to EBF.

That's very disappointing to hear from someone who was a member of this group.

For the record, my local breastfeeding support group was very supportive of my giving formula to help my jaundiced baby who was not gaining weight. It's possible to be both a breastfeeding advocate and supportive of all parents' choices.

That's awful but not surprising. DD was a special care baby with a low birth weight so whilst I breast fed she wasn't in a position to wait whilst my supply increased and struggled to feed from me properly. I expressed and topped up with formula. This saved her life as she just didn't have the energy to suckle properly. In special care they always ask your consent to give baby formula if needed. When one mother said no they literally didn't know what to do as her milk hadn't come in and baby was gravely ill. I'm presuming in the situation most people take the stance that we did of dear god just please save our baby.

I continued to express when I returned home and looked at ways to increase my supply as DD was wanting bigger feeds so was having more formula. I found the pressure from MN and the national breastfeeding helpline to try her feeding from the breast quite heavy and there was a lack of understanding that this was a baby that had struggled to feed at all, this was a baby who has nearly died, this was a baby where I had spent long nights bathed in the blue of the photo therapy lamp just desperately trying every bottle teat and breast feeding position available. Eventually we found a teat that she found easier and went with it because my baby needed to feed. When I explained this I was poo pooed for suggesting that I wasn't prepared to put her back on the breast because I couldn't risk her getting used to the breast when I didn't have enough supply for her and her not then accepting a bottle. She just didn't have the body mass to wait for me to catch up. I wanted desperately to breast feed due to the benefits but not at all costs and unfortunately that does seem to be the stance even we are literally talking life and death. I expressed what I could for 2 months in the end.

If that's the stance of the 'support' group i would be distancing myself.

I had to double take at this as thought it was my baby you were posting about but she's only been born two weeks ago.

She was the same. Kept In For jaundice and weight loss and I was encouraged to top up with formula whilst in light therapy machine.

We got home one week ago, her weight dropped, midwife asked me to use formula to top up again. I called breastfeeding support people yesterday and arranged for one of them to come out. They then called me back and cancelled on the basis baby has had formula, no help available.

Let's just say it was the final kick to a very low new mum.

They then called me back and cancelled on the basis baby has had formula, no help available.

What absolute arseholes!

As someone who isn’t able to exclusively breastfeed (for medical reasons on my and both my kids part) I’ve faced that shitty attitude too.
It’s so all or nothing, once they’ve had any formula your baby’s fucked and no point in them helping.
Arggh!

I’m on my second ‘topup’ journey. It is possible to keep bf if that’s what you want to do. I bf and topped up for over a year with 1st DC and 4mo into the same with 2nd.

I would thoroughly recommend seeing a IBCLC though, the ones I’ve met don’t have that attitude to formula. It’s a literal lifesaver and they understand.
Take care x

homemadegin, that’s awful. So sorry they did that to you.

Attitudes like this are exactly what made me stop breastfeeding my eldest at two weeks. I’d topped up with formula because I was really struggling and when I mentioned it to a peer supporter on a helpline they reacted like I’d poisoned my baby, and I felt too ashamed to seek any further help so I just stopped.

I’m still breastfeeding my second child who is now two, and I’m very pro breastfeeding but I think being anti formula does more harm than good. When I went to support groups second time around there was a wonderful sensible older lady who helped me, but I found some of the younger supporters a bit too militant and evangelical about breast milk, I would hear them discussing how wonderful breastfed babies poo smells and that formula fed babies poo is just so disgusting. I thought it was awful when some women there had used formula, if I’d have heard that first time around I’d have been devastated and would not have gone back.

They sound like loons OP. Would they rather the baby got ill?

@homemadegin that's disgraceful! DS1 had a tongue tie and was completely unable to latch. I found a la leche league consultant who was very helpful and she encouraged me to keep going with the bottles until DS learned to latch. She was very sensible while encouraging breastfeeding and while I never worried about sending DH and DS out with a bottle of formula, I bf DS until he was over two so it was the best of both worlds for us. Congratulations on your little one

Thinking about this - I went to a BFing workshop in the hospital before DD was born. Bf rates are great at birth and plummet over the first week, the aim of the workshop was to prepare us for that first week so we could persevere through the cluster feeding, milk coming in difficult stage. It was given by a lactation consultant who obviously was very pro breastfeeding. The scenario in your OP was one she specifically referred to, stressed that it was fine to give a bit of formula and just to keep trying with the breast.

@blackcat86 - I had a very similar experience, my little girl had a very low birth weight. The staff at the hospital did not want to wait until my milk came in which took about 3 days as they did not want to lose much weight. She also had to have glucose foot prick tests to make sure her sugar levels were kept up.

I tried desperately to get her to feed off me, but although she would latch she did not have the strength to suckle, she would then detach and start screaming as she was hungry.

I’ve fed her a combination of expressed breast milk and formula since then! :-)

I get the impression that some breast feeding support groups make out that formula is awful but when it saves babies lives like that of yourself and the op it should not be dismissed x

I think if it's a privately run FB group they have the right to set their own rules. I'm in a BF group and it's very supportive but the admin doesn't allow any discussion of non-BF milks. So even questions about cow's vs goat's milk for a 12m+ baby who is other breastfed are deleted. I'm also in a pumping group and if you discuss non-pumping aspects of BF or life with a baby you will be removed.

There are plenty of other places to get information about formula from - I appreciate some curated spaces to discuss exclusive BF.

I was in a similar position . I did ask if there was an alternative. I was told they could put my Ds in a drip.
I would consider a drip far more invasive and less natural than formula.

Some groups are just extreme . I am on one I just read for pleasure if I ever commented I would be banned. I call it a cult

Tbf most very easily solvable problems in regards to bf are usually met with “give formula!” Which is probably why the bf rate in this country is so appalling.

However, the militant refusal to consider formula as a decent alternative to a bf problem, especially when it concerns weight loss and dehydration is dangerous. Peer support is grand if your latch is a bit off, or you have a fast let down, but when it comes to baby’s health you should always seek advice from a medical professional and base your decisions upon that.

However, the militant refusal to consider formula as a decent alternative to a bf problem, especially when it concerns weight loss and dehydration is dangerous. Peer support is grand if your latch is a bit off, or you have a fast let down, but when it comes to baby’s health you should always seek advice from a medical professional and base your decisions upon that.

Isn't this the main point though? Facebook groups are not sources of medical advice. So if one group doesn't discuss the full range of options, then that's because it's an interest-based social media group and not a reliable place to go if you or your baby are having health issues.

The totally non-scientifically-backed rubbish people confidently recommend to others in internet mum groups is quite astonishing.

It’s not got steroids in so fuck off with that bullshit. People like you and these groups are dangerous. Mumsnet will probably delete this but you lot need locking up. I’ve heard so many babies cry through hunger because their parents won’t top up with formula but it’s poison. What’s more scary than a baby who is crying is one who stops and just lies there. I’ve seen several babies come close to death. Groups like this need shutting down. Selfish at best, murderers at worst

I EBFed my two boys but at the same time always had some cartons of instant formula around - I figured the odd formula feed wasn't the end of the world if it meant baby was fed while I slept!

Seriously, most BF supporters really aren't like this - any amount of breast feeding is a bonus.

Things like this make me hate breastfeeding! Fed is best. What ever way you do it but don't rub it in everyone's faces either way!

@user1471462428 I’ve heard so many babies cry through hunger because their parents won’t top up with formula but it’s poison. What’s more scary than a baby who is crying is one who stops and just lies there. I’ve seen several babies come close to death.

Can you explain what you mean by this? Are you a healthcare professional?

I'm in a lot of breastfeeding groups and I've never met anyone who purposely withheld formula from a starving baby claiming it was poison. It may be the case that a mother didn't know she was lacking milk which is a different situation. Pretty bold charges you're making and I wonder what it's based on.

Wow just wow. Formula is not full of steroids. It's heavily regulated on every front particularly with regards to advertising and in no way suggesting it's better than breast feeding. Yes there are great benefits to breast feeding and I was supported to express into syringes until I could pump so that DD had the first milk. The breast feeding militant agenda is the one getting out of hand. I found my baby on a sugar drip and then given an NG tube for formula because special care staff are not allowed to suggest a bottle. I was vulnerable having just had a c section, having lost a lot of blood, been separated from my newborn (first baby) and not knowing if we'd leave with her or be arranging a funeral. We were overwhelmed and terrified. I needed guidance but this didn't happen until day 4 when I started to get more confidence and information and suggested I pump and bottle feed with topped up formula. This worked well but I was disgusted that staff are told to use NG tubes over bottles when this involved dragging up babies stomach contents to check she'd fed. I don't blame the staff who were incredible, I blame those who make them feel unable to offer useful medical advice for fear they may offend. Until you've been there, watching staff trying to save your newborn life you have no right to pass judgement because you just don't know. I would have gone and scored her crack if I thought it would have given her a chance let alone given her a nutritionally complete and safe feed of formula.