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?

The clues in the name “World” It’s also disingenuous to suggest poverty and food insecurity issues in developed countries wouldnt be supported by increased breastfeeding. For example formula feeding increases the risk of ear infections, repeated and untreated ear infections can lead to deafness, deafness left undiscovered or unsupported leads to poor education outcomes leading to poor career opportunities. I know several developed countries where this is an issue.

brook - you’re right, by the time they come to us they’re generally in a downward spiral to formula feeding.

I did an audit once that said of all the babies we admit about 45% of them will be discharged fully formula fed and about 35% of them will be discharged mixed feeding. I think it’s very sad that only 30% of the families we see are able to go home EBF. As I said it’s a complete disservice to women and it shows how badly the system lets them down.

‘The ‘WHO code’ was only direct at mothers feeding in developing countries where feeding formula can be dangerous because of unsanitary water supplies

That's not true at all. In all countries breastfeeding on a population level is beneficial for babies - not only developing ones. Studies have shown BF babies are less likely to get gastro infections and have lower rates of childhood obesity, and SIDS incidence is lower in BF babies than in formula fed babies.

The stakes are lower in developed countries (e.g. water is safe to drink) but that doesn't mean breastfeeding provides no benefit beyond that.

And again - I think this group is extreme for kicking out a member over mentioning formula but it's a Facebook group with its own rules, which were clear, and OP broke them. She can join a different group. This isn't a human rights violation here.

I found breastfeeding 'support' groups horrific when i needed help with DS. He was severely tongue tied - it was so bad that a bf consultant & my mw told me to stop trying after watching me try to feed him - i was in agony, he was frustrated as hell & he was bloody hungry. I wanted some advice on the best way to make sure my milk would come in & maintain enough so that once the tie was cut i could retry. Because DS was on formula & whatever colustrum I could squeeze out, i was vilified! I have never seen such horrific messages from women who brand themselves 'supporters'. The basic gist of it was i should push through the pain (that was making me cry every time i latched him on), perservere despite DS screaming in hunger & not even attempt to express because it would disrupt my supply.

DS tongue tie appt took too long to come through & we struggled to get back to breastfeeding sadly. From my experience with that particular group (which came highly recommended) i can understand why people say bf mums can be militant.

I do understand that they don't want to promote formula, but the fact is that before formula was invented, babies did die due to not being fed properly by breastmilk for whatever reason. Those babies would have been saved by being given formula. Babies in a similar position now need to be given formula.

I’m a peer supporter. As far as I’m aware our main aim is to ‘support’ not necessarily advise (obviously we do advise mums if they are looking for specific info but we are not trained to dish out medical advice or to replace trained lacto consultants) Most mums will come to us wanting to breastfeed and reduce formula use if they are using it, however if a mum is happy mixed feeding or feels happier using some top ups, say one ff at night, it is not our place to tell her not to. The main thing a peer supporter should do is listen. This is not a ‘support’ group. Its crap and it makes me sad to think some women might shy away from using RL peer support groups. I’m very anti formula (mainly the unethical marketing of it) but it’s no ones place to tell another mum it’s a bad choice is it’s an informed choice.

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

I really doubt this happened. Highly qualified NICU nurses "panicking" because they couldn't give a wee bit of formula?? Not knowing what else to do? Between all their years of training and experience they couldn't come up with the very, very common intervention of starting a drip??
Formula was probably the most convenient (and sensible) option here but refusal of consent wasn't quite the disaster that has been portrayed!

Thankfully I have never come across a mother refuse to allow us to gove formula but we do have to get their signed consent to give it.

@Avegemitesandwich I agree 100% with you. My almost 90 year old grandmother passed away four years ago and she thought formula was amazing stuff she wasn't some idiot brainwashed by formula companies as many anti formula feeders always try to suggest. She actually breastfed most of her babies but she remembers as a child seeing the effect lack of milk had on babies and also the effects of breastfeeding on mothers who were themselves very unwell after difficult births. All things being equal breast is best the most important thing is a healthy baby and mum.

you’re right, by the time they come to us they’re generally in a downward spiral to formula feeding.

Shame on you

have I missed something? Shame for what?

Shame on me for what?

My general experience is that as soon as formula starts being given to breast fed babies then it’s the start of the baby ending up mixed fed or fully formula fed.

The mothers we see want to breast feed, they don’t want to give formula, hence why I say it’s a downward spiral for them because chances are that establishing effective breast feeding is much less likely when supplementations are being given.

It isn’t what these mothers want and they deserve a better standard of care to ensure they can EBF.

If you go on a breastfeeding support group asking for or giving advice to formula feed then youre in the wrong place. Its a breastfeeding support group. The clue is in the name.
Jaundice can be treated while breastfeeding exclusively.
Im not against formula feeding , but we need groups that assist with breastfeeding issues without resorting to pushing formula at the first hurdle, as once you start giving it, it so often just means your milk supply dwindles more and more until before you know it youre exclusively formula feeding.

My sister massively struggled breast feeding and it turned out he had tongue tie missed by health visitors and in the end CMPA. The support group were banging on about no matter what you do you have to continue to breastfeed rather than actually helping her. I think some are so pro they won't accept any other option and I thought it sounded a bit like a cult.

Both my babies were tongue tie.

My second one (who also turned out to be CMPA) had a severe tongue tie and feeding him was unbearable. By day 5 my nipples were shredded and bleeding and feeding him was torture. I cried through every feed, it was unbearable.

I paid for him to be treated privately as they saw him within 24 hours of me calling them. There is absolutely no way on earth I would have been able to continue breast feeding him without him having it cut. The pain was like nothing I’d ever experienced.

Branleuse many people go on there looking for support to keep supply up whilst issues are being dealt with. I saw so many being belittled because of circumstances outside of their control. Going on & specifically asking about formula i could understand, but if someone is desperate for advice on how to maintain supply so they can bf once issues are rectified they shouldn't be jumped all over.

Jaundice can be treated while breastfeeding exclusively.

Depends how bad the jaundice is. Both my breastfed babies developed jaundice severe enough to need phototherapy before my breastmilk came in.
With both of them, they were starting a vicious circle where the jaundice made them too sleepy to try to feed properly, which meant they weren’t getting enough milk, which made the jaundice worse.

With DS2, by the time they started the phototherapy, because the jaundice has made him too sleepy to feed, his blood sugar had dropped to dangerously low levels. The midwife warned that there was a risk of DS2 getting brain damage if his blood sugar level wasn’t raised quickly. And as my milk hadn’t come in, that meant formula top ups. If I’d refused them permission to use formula, the only other option would have been drip feeding DS2, which would have been far more invasive, and more traumatic for DS2.
Things didn’t get quite as extreme for DS3, but I still consented to formula top ups for him because he was too sleepy to feed and I was concerned about his blood sugar dropping dangerously low if he didn’t get anything.

In both cases, the hospital knew I wanted to breastfeed, so they gave the formula top ups as cup feeds, provided a breast pump, and helped support attempts to get baby breastfeeding. Once my milk came in, they used expressed breastmilk for the top up feeds.

Both times, once baby was recovering from the jaundice and starting to be more alert, we managed to establish breastfeeding with support from the hospitals breastfeeding support workers.

DS2 and DS3 were both fully breastfed by the time we were discharged from hospital, continued to be fully breastfed until we started weaning, and they both continued breastfeeding well into toddlerhood.

But I doubt that either of them would have got over the jaundice unscathed if I’d insisted on breastfeeding as their only source of nourishment.

hope - I’m glad it worked out well for you, it makes me smile and feel more faithful in the system when I hear of outcomes like yours

I think the millitant approach can do more harm than good sometimes.

Neither of my babies would be here now if it weren't for formula. But both ended up breastfed. Dd1 till 15 months, Dd2 still bf at 20 months. Partly i was lucky with the support I got with each of them, but mostly it was sheer bloody mindedness on my part!
Formula is a lifesaver for some, we have to remember that babies used to die through lack of milk pre formula. Surely part of supporting mothers is to advocate the use of formula when needed, in addition to breastfeeding, if that's what the mother wants? was
Now DD1 is 4, no one cares how she was fed as a baby.

Ds1 needed phototherapy too. Nobody even mentioned formula. Its really common to get breastfed jaundice. Its not the same as liver failure jaundice.

He got a few days phototherapy and they wanted to make sure he was feeding and i was advised to give as much sunlight as possible, eg putting him next to a bright window.

Our stories are almost identical HopeGarden. My DD was also extremely poorly and was in the end, cupfed formula until my milk supply increased. We are still breastfeeding months down the line thanks to the help of formula.

What the admins of the group fail to realise is that by belittling the choices of others to give a small amount of formula (like I felt they did with me) they could be causing women to feel they made the wrong choice which could have further consequences for vulberable mothers. For all they know,I could be suffering PND and they were considerably insensitive to the choice I had made for my baby.

I had joined the group for support myself after the birth of my jaundiced baby who wouldn't feed who also suffered 2 tongue ties and by banning me, they refused to continue supporting me.

I think that is so wrong.

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.

So you’re a nurse but you know better than the doctor?

And the WHO is regulating mommy groups on Facebook now is it? What utter self-aggrandising bullshit

There are lots of very harmful frog ups on fb (see the recent death of a baby whose mum was cheered on by a Freebirthing group). Par for the course.

*groups not frog ups! Very odd typo 😂

fartniss - doctors aren’t the be all and end all of knowledge - ESPECIALLY when it comes to breast feeding.

I am asked to see mothers/babies very frequently by doctors because they admit they don’t know what to do when it comes to breast feeeding problems.

The care of breast fed babies with weight loss is predominately nurse led without having any input from the doctors at all really. They know that we know far more than them about establishing breast feeding and even formula should and shouldn’t be used and so they allow us to lead the care/treatment.

There is no shame in doctors not knowing everything and thankfully I’m fortunate enough to work with ones who aren’t arrogant enough to think they can dictate to us ‘mere nurses’ and that they respect the knowledge we have that they don’t.