Help. Tuberous breasts: what do I do?

[StiffyByng]

I'm quite upset. DD went to the tongue tie clinic today to be snipped, and she's been gaining weight very slowly. She only regained her birth weight today, at six weeks. While we were there, the lactation consultant checked my breasts and told me they were tuberous, meaning I lack breast tissue and therefore will have low milk supply. She was very pessimistic about my chances of continuing to feed only breast milk. Her colleague was less so, and we've agreed I'll spend a week pumping, and letting DD use her new tongue skills, to see if that gets supply up. It does make sense; my breasts haven't changed size, nor did my milk 'come in'. I've already been taking domperidone for five days.

Coming home and googling, I see that around a third of women with this condition do manage EBF - not the picture she painted at all - and that some women do not have milk ducts. I do, and have sustained a tongue tied baby for six weeks, without expressing, although obviously not enough. She is very happy and alert, and developmentally strong, but feeds very often. Weighing before and after the feed today showed she got about 30ml, and that took 40 minutes.

Does anyone have any advice or experience of this condition. I'm feeling quite shattered and demoralised to be honest. In a week, if she's not gaining enough, they will insist on formula top ups, and I can't make my baby suffer if I can't feed her myself.

I don't know much about this specific problem, but had to give DD top-ups for the first 6 weeks of her life after a SCBU start. We didn't use formula after the first 2 weeks, just EBM.

If you start pumping regularly, you can see if you can up your supply. If you can improve the weight gain with EBM top-ups then it is proof you can make enough milk and then you can work on improving bfing so that LO can take it straight from you.

Pumping is a learnt art and requires relaxing and effort that bfing doesn't. So don't panic if you can't get anything out at first. I get less than 1oz in a session usually now (as I don't express regularly) and DD has been EBF for 5 months with her weight climbing the charts!

There's an excellent book that I would highly recommend - "The Breastfeeding Mother's Guide to Making More Milk". There a website - www.makingmoremilk.com although TBH it's a bit pants (whereas the book is excellent). It's available on the Kindle if you have one so you could get it immediately, or otherwise it's easily available on Amazon.

It discusses this issue specifically, and will give you some good ideas and a good understanding of the condition.

I'm very impressed that you've got this far with TT as well. Great news that the TT has been snipped. You may find that with that done you are fine, but the more you find out, the better your chances of getting a full milk supply.

Not an expert, but my breasts have low milk storage and both dc's had tongue ties which were divided.

I had a really tough time with breastfeeding first time round and ended up bottle feeding, but this time round it's going really well at four months. The difference this time was I just fed and fed, up to 16 hours a day for the first few weeks.

So, if DD is happy to feed constantly and seems bright and hydrated, and you can bear it, then you should be able to make enough milk for her. DS still often feeds 2 hourly, night and day, both sides. Crucially this time I learnt to feed lying down so I can sleep and feed at the same time. Makes a huge difference at night time.

Avoid formula top ups if you possibly can, don't worry too much about expressing.

Try and relax as much as possible and don't try to do anything except feed your baby for the next week!

Good luck, I know how hard it is when you feel you can't feed your own baby. Take each day at a time.

Oh and the feed you did in front of the lactation consultant was probably not typical if you were stressed and not in your usual enviroment.

Unfortunately, if you do indeed have tuberous breasts and are keen to BF your dd (congratulations, btw ), you have no choice but to feed, feed, feed (and express if you want, just bearing in mind that what you express has very little to do with how much the baby is actually getting) and see how it goes.

As you have found out 'tuberous breasts' is not one condition, but its effects on lactation and effective milk transfer vary enormously from woman to woman.

You clearly have already done well to have got this far with a TT baby. Hopefully with this having been treated your DD will become more and more efficient in extracting as much milk as possible from you.

Feed frequently.
Offer lots of skin to skin contact.
Express on one side while feeding on the other (if you can manage....)
Domperidone can help, but don't put all your hope in that alone.
Offer at least both sides at every feed, or 3, 4, 5 'sides' IYKWIM

Lots of good advice on increasing milksupply on kellymom and Dr Jack Newman (google them both).

I think as long as your DD is happy, weeing, pooing, not losing weight, then there is scope to persevere a bit longer.

You may or may not be able to exclusively BF, but either way the more BM she gets, the better.
FWIW, I have always found successful BFing a challenge and it has usually taken to 3 months or beyond before I'd find it 'easy' with all 4 of mine. Disclaimer: I do not have tuberous breasts myself, but have dealt with women who have in my professional life (GP).
Just out of interest: prior to having your DD, did you ever think that your breast were different from others or had any concerns about their shape?? I am just wondering how this diagnosis of TB was made

Thanks, all. Some great ideas for me to look through.

Yes, my breasts look weird to me, but I had no idea there was a condition. The lactation consultant took one look to diagnose. I had been asking my midwives if it was normal for my breasts not to have changed size at all but they said it was nothing to worry about -presumably they hadn't come across it to ring bells. They checked that I had milk (I did) and that she latched OK (she did) and didn't go any further.

You might find this helpful particularly the photos?

Thanks. My breasts are recognisably tuberous. I know I make some milk but the lactation consultant wasn't optimistic about increasing the supply. It seems to me though worth a shot at finding out given that up to now my baby hasn't been able to provide proper stimulation. But her attitude was that it was all pretty hopeless anyway.

Hi SiffyByng. :) I have this too, but didn't know it until we had already started topping up with formula after dd was admitted for dehydration at 6 days old. Like you, I had no breast changes in pregnancy and no sensation of milk coming in after my daughter was born, though I did have colostrum and some milk. It sounds like your supply is much better than mine was, because there is no way we could have gotten to 6 weeks with dd being "healthy and alert, and developmentally strong" as you describe your daughter. When we brought her back in to hospital, she was lethargic and visibly dehydrated (cracked lips, flaky skin etc). Maybe that's an indication that you're more likely than I was to be in the 33% for whom ebf works out?

Even with my very poor supply, we went on to combo feed to six months. I do wonder whether my supply could have been built even a little bit more if my condition had been recognised before the point where dd was sick from lack of milk. By the time that happened, I was just grateful for the formula and relieved to finally be getting some dirty nappies and know that she wasn't starving. When we brought her home from neonatal, we were reliant on the top-ups and my supply never picked up despite endless skin-to-skin, suckling, pumping, fenugreek and domperidone. I did, however, manage to retain a reliable-if-meagre supply until about six months, when she started solids and grew increasingly impatient and frustrated at the breast.

I just wanted to say that given the very real obstacles in your and dd's way, you are doing an absolutely fantastic job to still be ebf at 6 weeks. It is hard work and it's physically and emotionally exhausting (and we didn't have a tongue-tie!). For me, no matter how much I rationally knew that it wasn't my fault that I couldn't provide enough milk, that was a very difficult thing to internalise and let myself off the hook about. If I'm honest, I still haven't, entirely. I'm not surprised that you feel shattered and demoralised, and the conflicting "expert" advice can be maddening.

I do see now that the lactation consultants, midwives, nurses, hvs and gps couldn't win: if they told me there was still hope and I should keep trying, I felt that they didn't really believe that the problem was something I just couldn't fix, and I would therefore be 'failing' if I accepted that it wasn't going to happen. If they told me it wasn't going to happen and formula would do just fine, I felt that they didn't respect how important breastfeeding was to me and that they were devaluing something I'd worked so hard to maintain.

It's a tough in-between position to be in, and it's made tougher by the fact that so few people have even heard of tubular hypoplastic breasts. I felt very alone in those early weeks (despite the ever-supportive presence of my lovely dh) so I just wanted to share a bit of my experience to let you know there are others around who have dealt with similar situations.

I wish you all the luck in the world. Combo feeding worked out great for us and is by no means the end of the world, but given how (relatively) well things have gone for you in the first six weeks, I really hope that the tongue snip makes all the difference and you land firmly in the 33% club :)

hi, i also have this. i had huge problems feeding ds1, tongue tie, and i didn't really feed frequently enough as i thought 3hourly was enough! he dropped down the weight charts and i ended up mix feeding after paed referral (no real help given to get more BM into him and certainly HTB not looked for) and after 2 weeks he refused to bf and we switched to ff (at about 4 months).

With ds2 I fed almost constantly it felt, and did manage to EBF, I weaned him just before 3 yrs. With ds3 I felt my supply was a bit better helped by tandem feeding and he is still BF at 13months.

Can you do a babymoon? I think it is good you have a diagnosis (I was pg with ds3 before i worked it out!) and domperidone and a lactation consultant to help. In hindsight I think I could have salvaged bf with ds1 had i had skilled advice to feed and feed and feed - baby moon great. Also co-sleeping and sling helped me. And if you do end up mix feeding, ask the LC for help to prolong the bf as much as possible - my ds1 quickly liked the faster flow of a bottle. And it might be better/easier with any subsequent dc. With ds3 i went to bed for 2 weeks after his birth for a long babymoon. Good luck x

Hi Cloudy and Weasle. Thank you so much for sharing your stories. I've since found earlier threads on here about this, and was grateful to find there are nicer names. It seems a real kicker than not only will I have huge problems feeding my child, but I have a condition which pathologises and lists all the features of my unattractive breasts and gives it all a horrible name. I haven't been able to post as I've been on my phone with an unreliable connection.

At the moment, I'm spending quite a lot of time in tears. The lactation consultant at the clinic more or less told me I'm starving my daughter. I fee very stupid as until this happened, I hadn't realised just how slow her growth has been. She was, when weighed at 6 weeks, only about 80g above birth weight. I feel absolutely awful for her.

I've spoken to the more supportive and sympathetic LC at my local cafe on the phone and she said I was right to try pumping. I think we all seem
to feel domperidone has failed for me. DH bought me a lactalogue tincture yesterday, and I'm ordering fenugreek and goat's rue too, but I have to own up to a lack of faith in them.

The Medela Symphony arrived yesterday and I've done a lot of py
pumping. I get between 10-40 mls each time, depending on time of day and how long the feed beforehand was, which is obviously pretty poor. DD has seemed far more settled since the TT op on Wednesday and is sleeping more, but I am now tortured with guilt that I'm making her ill for my own ends.

And I find that I'm hating my stupid breasts and feeling like a freak of a woman. It is so good to read others' stories on here, otherwise I think I would be even more devastated. I've always wanted to breastfeed. I used to breastfeed my dolls. I know all the reasons why it's best for my child. (The Medela helpfully came with a booklet to reinforce it. Apparently breastfed children are less likely to be injured by boiling water.) I've been told over and over during pregnancy that all woman can breastfeed. What kind of woman am I that I can't.

I can hear DD crying with her grandmother while I write and I assume she's hungry. The LC told me she is 'always hungry'.

Stiffy, you are doing the best thing for your daughter - she is getting your milk.
If she needs extra calories from formula milk, it doesn't negate all the goodness/closeness she gets from you.

You are doing everything you can do. If she puts weight on a bit faster, you may find her energy levels increase and she becomes an even more efficient feeder.
Be kind to yourself, you're a fabulous mummy.

It sounds like you are doing a great job against lots of problems and it must be very frustrating to not know how it will pan out for you.

You've had some great advice on this thread, I second 'The Breast feeding mother's guide to making more milk' it is very good. All I wanted to add really was that if you do find that you cannot provide a full supply of milk you might find a Supplemental Nursing System useful.

It basically is a bag that contains the 'top up' milk, which goes through a tube you attach to your nipple so your baby gets all of the closeness of breastfeeding and the extra milk they need too.

Also, you might be interested in Human milk for human babies which is a milk sharing organisation.

Hi Stiffy - so sorry you're having such a tough time :(

Your last post resonated so much with me. I remember feeling like "a freak of a woman" and feeling that I hated my body, and everywhere I turned for support seemed to reinforce those feelings by telling me, as you say, that "all women can breastfeed" or at least virtually all. When dd was tiny, I felt all the feelings you describe. Guilt, failure, guilt, sadness, guilt, anger, and guilt. It's awful, and there's no point telling you not to feel it because it is what you feel. If you could choose not to feel it, you already would have!

But you don't deserve it. You are doing a fantastic job and you sound like a wonderful mum. Your body has already done the most amazing thing a human body can do! It has grown and nurtured and delivered a new life to the world. It is six weeks later, and now you're thinking "what kind of woman am I" and hating your body. You do not deserve that.

Of course you're not "making your dd ill for your own ends". Firstly, she isn't ill. You have been a caring and responsible parent in ensuring that she is seen by health professionals and that you get advice on her feeding and growth. If she was ill from lack of breastmilk, she would be in hospital or you would have been told in no uncertain terms that you absolutely have to top up with formula. And none of this is for your own ends: everything you're doing, you're doing because you love her and want the best for her and are willing to do whatever it takes to give her what's best.

"What's best" for her means whatever you - the person who loves her most in the world - decides that she needs. The thing that you choose (whether that's to persevere with ebf or to give formula as well) will be the right thing because you know your body better than anyone, you know your daughter better than anyone, and you care more about her than any formula marketing department or any lactation consultant does.

On another note, I completely agree with you about the awful name for our physiological breast issue. Talk about insult to injury! FWIW my once-starving-but-now-healthy-thriving-bright-and-wonderful-2-year-old dd seems to have no opinion on bf/ff. She much prefers tomatoes, avocadoes, and salmon to milk, and she would eat her weight in bananas if we let her. The days when which kind of milk she drank was the most important thing in my life seem like a distant memory. And dd certainly has no problem with my 'tubular' breasts when she snuggles into them for a hug - it's my cuddles she likes best of all :)

The LC told me she is 'always hungry'.

I'm not wishing to belittle what you are going through, not having had the same problems myself, but what the LC said could be applied to ALL six week old babies, it seems to me. They just are. They feed and feed and you feel like it will never stop and they still want more. Having a baby who is (slowly) gaining weight with the problems you've had seems to me like a huge WIN. I think with pumping and the improved feeding she could manage now the tongue tie is sorted, you have a good chance of making BM her primary source of nutrition. You have already got further than most people who start off BF manage. With your determination, I think you can carry on (partly or fully) for much longer if you want to. Also, I take my hat off to you. You sound like a very brave and resolute woman.

But don't feel bad if a bit of formula is what it takes. You are one of the few people who genuinely does have a supply issue (how serious it remains to be seen) and there is no shame at all in helping yourself out a bit if you need to. Nor would there be any shame in switching entirely to formula if the pumping etc is impacting on your happiness and ability to enjoy your lovely baby.

Halogen, there is a difference though between a 6 week old whose mum doesn't have Stiffy's problems.

I think LC saying that she's 'always hungry' was an attempt to ensure that Stiffy's baby gets what she needs.

An LC who has seen her and Stiffy has recommended top ups and tried (perhaps not gently enough ) to prepare Stiffy for the fact that she may not make a full supply.

Whatever bm she makes is of course precious and worthwhile.

Can I say thank you for all the kind comments and wise advice on here? I'm afraid I couldn't face posting for a bit.

DD fed more and more, culminating in seven hour feeding marathons. I pumped like mad. When she was weighed, she had only put on 70g in a week, despite getting the tongue tie fixed. (Although that was on different scales-the next day at the surgery it was 140g, but I was told this was immaterial.) My health visitor said she needed top ups. My husband was getting worried about both of us. The health visitor was quite annoying but by this point I was so stressed about her I couldn't take much more.

I started her on top ups on Tuesday and she is a new baby. She us content, I can put her down, and her nappies are much wetter and dirtier. I still feel awful at not being able to EBF but we're more relaxed which counts for a lot.

We've had a review appointment at the TT clinic, with the lactation consultant who diagnosed. She remained pretty insensitive, this time telling me I could ask my GP for an NHS boob job. I then had a session at home with another lactation consultant, who was wonderful
and confirmed I was doing all I could.

So the plan is to feed, give top up, then pump. I'm taking domperidone, fenugreek and waiting for goat's rue to be delivered. Also breast compressions, co-sleeping and sling wearing.

I've just been reading stories on here of people with slow gaining babies who continue to EBF and wondering if I shouldn't have given in. I manage to express between 10-30mls at most pumping (in total, not each breast) which isn't great. I'd love to get back to EBF but even the nice LC felt that wouldn't be possible.