Tuberous breasts - has anyone had any success BFing?

[SunflowerOwl]

I'm 22 weeks pregnant and my boobs haven't grown a millimetre. They've also not been tender or sore. I was told in my early 20s by a plastic surgeon that my breasts are mildly tuberous, and from researching online this seems true. They aren't small as such, but are spaced wide apart, are pointy rather than round and I have large, puffy nipples. To my dismay breasts like mine seem to be associated with an inability to breastfeed, which is something I really wanted to do.

Has anybody else got this condition and has managed to breastfeed? I'm happy to top up with formula if I need to but I'd love to be able to give my baby a few feeds myself at least for a little while.

TIA

[R3ALLY]

It’s not easy I’m afraid. I have insufficient glandular tissue, only diagnosed on my second pregnancy which meant a tiny supply. If you are googling try the American sites like Kellymom as it’s rare and not talked about much. The good news is even if you do lack tissue there will likely be some milk. I gave DS2 all my collustrum and and the equivalent of a feed of BM per day till he was 3 months . I also expressed prenatally which meant I had a supply of collustrum ready for him but be careful as that can stimulate Labour so only do it towards the end. Best of luck, much better to know in advance, my hospital didn’t have a clue

[SunflowerOwl]

Thank you for your reply

I'm sorry you suffer from this too - I'm reassured that you did manage to produce some milk, I hope that'll be the case for me too even though I know I'm unlikely to be able to exclusively BF.

I will have a look at Kelly mom too!

[addler]

I have this, and I won't lie it's been incredibly hard. I was worried during pregnancy that I would have trouble feeding due to tubular breasts and no breast growth, I saw the infant feeding team and she was able to express some colostrum so didn't think I would have any issues. I knew however from my own research that colostrum isn't indicative of a full milk supply.

In hospital they came to see a feed and said he was latching fine and position was great and we shouldn't have any issues. He ended up losing 12% of his birth weight by day 3 and my milk never came in properly, it just changed from colostrum to normal milk consistency and colour.

If you do have low supply, I've done a lot of independent research and this is my advice/what I wish I had done:

• express colostrum as much as you can from 36 weeks onwards. You might get nothing at the start but the more you can get the better, both for baby and for your supply
• contact your infant feeding team at your hospital if they have one and ask for a feeding plan you can implement from birth. It might have things like pumping after every feed immediately
• get a decent pump and make sure the flanges fit your breasts and nipples. A lot of the time when women don't get much milk from pumping it's because the flanges don't fit. Measure your nipples and if they're much bigger or smaller than the standard size that comes with your pump buy different sized ones. I have very small nipples so have inserts for the already smallest size I could find online
• get baby assesses for tongue and lip ties, by a tongue tie specialist. If your baby as poor milk transfer it will not help your supply
• get in touch with an IBCLC in your area who can work with you personally to get the most from your feeding journey
• read the book Making More Milk by Lisa Marasco
• if you have trouble with your supply you can join a private facebook group called Low Milk Supply/IGT. They won't take anyone before they've had issues though
• after birth ask for blood tests checking your thyroid, Vit D, iron, prolactin, and glucose levels. All of these can hinder an already supply

People will tell you that all you need to do is put baby to the breast and breastfeeding is just supply and demand. And for most women it is. But for women with IGT we lack the actual tissue that makes the milk and so no amount of demand is going to increase supply.

If you have vitamin deficiencies again normally it wouldn't be so much of an issue, and some women can have low amounts of tissue but it's very effective, but if you have a physical issue and also a vitamin/hormonal issue then you're fighting a losing battle so it's really helpful to rule out anything that can be making it harder.

I have a tiny tiny supply. DS is basically completely formula/donor milk fed with a very small amount of my own milk. He has all his feeds via an SNS, save for one bottle a day that DP gives him. The SNS is great, especially in the early days, because he was getting the supplement he needed to grow at the same time as giving extra stimulation to me, getting the small amount of milk I was making, all the other lovely things of breastfeeding and less time compared to traditional triple feeding (breastfeeding, pumping, then giving expressed milk or formula). He's nearly 5 months now and we still use the SNS. It's really saved breastfeeding for me. With IGT each pregnancy and breastfeeding journey increases the chance of tissue growing in subsequent pregnancies, so the longer I breast feed for I know there's a slightly higher chance I'll make more milk in future pregnancies.

With all of this, some women with tubular breasts don't have any issue feeding at all. But if you do, and you want to breastfeed, there are some things you can try. Good luck

[SunflowerOwl]

Wow thank you @addler for such an informative and helpful post.

I'm definitely up for trying everything and being as prepared as I possibly can. I'd not heard of an infant feeding team but I have a midwife appointment in 2 weeks time so I'll see if I can get some details.

[R3ALLY]

hospital they came to see a feed and said he was latching fine and position was great and we shouldn't have any issues. He ended up losing 12% of his birth weight by day 3 and my milk never came in properly, it just changed from colostrum to normal milk consistency and colour.



That’s exactly what happened to me! Never any sensation of ‘milk coming in’. The first hospital hadn’t a clue. I changed hospitals on 2nd baby and they were lovely but freely admitted I was educating them when I arrived with a bag of frozen collustrum ! If this is the case for you you are so much better off knowing in advance. I wasted so much time on DC1 trying to get a ‘normal’ bf relationship. On DC2 I knew the story and had my bottles and pumps ready. I ended to combo feeding him for 3 months, about one feed a day was BM. Expressing was very hard though so I was happy to let it go at 12 weeks knowing I had done my best. I second the Making More Milk book, I took so many supplements I rattled. The best I found was moringa. And my other advice would be to seek help from people who know what they are talking about , preferable a professional lactation consultant and not the usual bf groups. I found it very upsetting to be told ‘oh just lots of cuddles and skin to skin and you’ll be fine’. It was like I was being accused of not cuddling my baby! I needed a lot more than that.

[R3ALLY]

You’re a hero Adler ... I could never manage the SNS. Ended up spraying the room. So I expressed every 3 hours and collected enough for a bottle a day. That means my supply on full time expressing, with loads of supplements including domperidone was 4oz per day. When he started taking more than that I retired .

[addler]

Even with all the supplements and proper fitting pump the most I managed to make was 20mls in one day. That's with 7 pumps and one power pump, it really is abysmal. I've actually been thinking of trying to create and market my own SNS that combines all the good parts of the ones available on the market and doesn't have the bad parts, as some like the Medela I use is so expensive and the parts need replacing quite often. Then the cheaper ones like Haakaa has a too big tube etc.

Anyway, I digress! I do recommend getting something like Freemie cups as you can connect them to a lot of different pumps, and then you can collect easily while you're feeding on the other side to decrease the amount of time you're attached to a pump. You can wear them round the house too

I second the comments from other women can be really upsetting, especially when they're so adamant that you just need more skin to skin and keep offering the breast and not to ever top up with formula. If I did that my baby would have literally starved.

[R3ALLY]

Yes, and a bowl of porridge won’t fix me, thanks! that pump would have been amazing. I’m going back a decade and I rented a hospital grade pump which was great but loud and massive, you couldn’t even watch tv with it. It would be great to have more help out there but it’s so rare. I doubt there are accurate figures though because you have to persevere and really research to get a diagnosis at all. I think there is more knowledge in the us because talking to plastic surgeons is more common too.

[addler]

There's actually a research project just underway by Imperial College, I was part of their focus group before the study went live. So I'm really glad that it's finally being looked into, and hopefully will increase awareness amongst HCPs and the wider public. I even had midwives and maternity assistants telling me I just needed to pump more and it was so hard to not have that support. It was only because I had researched so much myself while pregnant that I was at least partly prepared. And I still found it incredibly upsetting and hard, and it's nothing against formula. Formula is wonderful. But I never had that choice, I wanted to do something so badly and my body failed me. It still upsets me that I have to use donor milk, so it's not that I'm against FF over BF. And it will hopefully help stop people saying 'some people just can't breastfeed and that's that' when actually there's a reason that person can't breastfeed and why shouldn't it be looked in to?

[OakleyStreetisnotinChelsea]

I would ask if you can speak to the infant feeding midwife before your baby is born for advice and to help you make a plan to maximise your breast milk. Antenatal colostrum harvesting will give you a head start and help you learn the skill of hand expressing before birth. Lots of skin to skin, regular feeding and expressing after feeds will really help to maximise your lactation.

You don't know what you will produce and may well have to top up but in the early days watch your baby, does he settle after feeds? Is he doing wet and dirty nappies? Is he giving you at least 2 yellow poos by day 5? Stepping in too soon with top ups could reduce your supply but equally if your baby shows signs of not getting enough milk you may need to supplement. Your midwife can help you understand what to look for and do regular checks.

The wonderful thing is that it doesn't have to be one or the other. Even if your baby needs formula for nutrition he will still get lots of comfort and immune factors etc from your breast milk.

[R3ALLY]

@addler id love to read that study, I’ll look out for it. Sorry to monopolise the thread OP! Hopefully, even if you do have an issue, it’s on the mild side. What really kept me going was the thought that every BF helps. Even just giving the baby collustrum is a big help. Every day after that is a bonus. It’s hard to discuss this sometimes because someone will always say ‘oh just give formula don’t beat yourself up’. But I wanted to BF, my decision, my choice and it was important to me.

[scaredsadandstuck]

If you can afford it I'd recommend finding an IBCLC qualified lactation consultant and talking to them. Some will offer a package that include support before and after birth. In my experience they are worth every penny - good luck!

lcgb.org/find-an-ibclc/

[addler]

@R3ALLY is right, there have been studies that show that even a teaspoon of breast milk provides your baby with nutrients and antibodies from the mother. So every tiny bit is still beneficial to your baby!

[Babdoc]

OP, it’s great that you are aware of this in advance, and able to be philosophical about the likelihood of needing to formula feed.
So many mothers over invest emotionally in the importance of breast feeding, and berate themselves as failures when it doesn’t work, becoming stressed and depressed.
I had the same problem as you - breast hypoplasia - no development during pregnancy, and the maximum quantity of milk I could produce for a feed was barely an ounce, despite expressing, pumping, etc.
Both my babies had to be formula fed, and I was bitterly disappointed. Particularly as I was a doctor, and very aware of the claimed benefits of breast milk.
However, that was over 30 years ago, and both my DDs are now healthy intelligent graduates in good jobs. One has an 1Q of 160, the other tackles marathons and bags Munros. I don’t see that formula harmed either of them, any more than it did me and my (largely bottle fed) generation, who are the longest lived and healthiest in history!
Give your baby any colostrum or milk you do produce, but be relaxed about the bulk of their nutrition coming from formula. They’ll be starting solids before you know it - the milk stage is a tiny part of their childhood, and not worth fretting over!

[FontyMcFontface]

When I did breastfeeding peer support training, the lactation consultant running the training did say that the vast majority of women are able to breastfeed... but that those with breast tissue insufficiency are usually in the minority who physically can’t, unfortunately. I’m sorry, OP.

I would suggest speaking to the infant feeding coordinator or a ibclc consultant to prepare you in advance, make a plan, and monitor you to see if your milk can be sufficient.

[RidingMyBike]

This is similar to what happened to me. Breasts never got bigger during pregnancy. I also have PCOS and had gestational diabetes (all of which also affect milk supply. I was put under huge amounts of pressure to breastfeed, including at the obstetric diabetes clinic . Nobody warned me and I had no idea low supply even existed.

I was encouraged to EBF which was an absolute disaster. It was also a difficult birth with haemorrhage (this delays milk coming in). My baby ended up seriously ill with dehydration by day 5, by which point she'd lost more than 13% of her weight. My milk didn't come in properly until 8 weeks and I never got above 50% supply, but did end up breastfeeding for more than 3 years.

So, go in prepared. Check your hospital's policies about providing formula (mine didn't except for a 'medical reason' but then denied these exist). If you breastfeed often, but also offer formula top ups you'll stimulate supply whilst ensuring your baby is being fed.

And see how you feel about it. Some women really love breastfeeding but I must admit I found bottle feeding much more enjoyable and a great bonding experience whereas breastfeeding was never something I enjoyed.

Good luck!

[SunflowerOwl]

Thank you for all the new comments and advice it is really appreciated

Please dont apologise @R3ALLY, its actually nice to see it discussed honestly rather than the usual 'all women can breastfeed' that I've seen elsewhere.

Feeling like a failure post partum really concerns me, even though I'm trying to be rational and philosophical now I think a small part of me still hopes I will be one of the lucky women with this condition who can produce enough milk, so the practical side of my brain knows its likely to hit hard when my baby is here and its confirmed that I won't able to. At the moment there is still the glimmer of hope.

@addler you are right, formula is wonderful and I'm grateful to have that option. But there is just something lovely about being able to nourish your baby from your own body, isn't there? I keep thinking about not being able to do that and bursting into tears, then reassuring myself it doesn't matter, then crumbling again. It's really hard and the baby isn't even here yet

[YetAnotherHastyNameChange]

I have tuberous breasts and managed to breast feed both my dc, although did have to supplement with bottle feeds. I ended up doing about 2 breastfeeds for every 1 bottle feed.

My breasts also didn’t change shape throughout my pregnancy until the week before I gave birth. I don’t know how common it is but my breasts themselves didn’t change shape but areolas grew very swollen and they’ve stayed much larger than they were pre pregnancy which I absolutely hate.

[NellWilsonsWhiteHair]

Hi OP. So I think I have tuberous breasts - definitely the description matches their appearance - I didn’t actually know this wasn’t a thing until I saw a post on here about a year ago (re: upset teenage daughter, not breastfeeding).

They didn’t change in size or shape during pregnancy, but my milk still came in with big rock hard breasts on day 3. DC1 was ebf, born on the 25th and leapt to 91st centile by 6 weeks, where he stayed until he was on the move and slimmed down to the 50th. He was tongue tied and bf was not straightforward/pain-free as a result, but my supply was fine and we bf for nearly 4 years until he self weaned.

DC2, zero problems feeding, similar weight gain trajectory. She’s still going strong at 3.