Tubular Hypoplastic Breasts - Support for those desperate to breastfeed.....

[FruitynNutty]

I hope you don't mind kat, but I've started this new thread as I'm not sure how clear it is from the title and I think we all really need the support - I know I do! I'm sure there are loads of other women with this problem so I think it would be nice if we can all share our experiences.

Other thread with links to interesting websites

I just wanted to say how grateful I am to you, kat, for bringing this up btw!

I thought I just had strange shaped boobs - just assumed, as we all have different shapes and sizes, I was just one of the unlucky ones. I'd never seen anyone with boobs like mine but I sort of excepted it after years of desperately wanting an augmentation.
Ever since I failed at breastfeeding my 1st DS, I've been told "Every woman can bf, you always supply enough on demand". This has made me miserable ever since and it always brought a tear to my eye as I know I tried so hard (if only for 5 weeks).
I now have a 5 week old DS2 and spent my entire pregnancy desperately hoping to be able to feed him exclusively, I wasn't going to give up as easily as I did with DS1 as, after all, every woman can BF and it's supply on demand right?
Now I know it's a medical condition which is beyond my control. This new revelation helps a little but still leaves me feeling angry and upset. Angry that it wasn't picked up on ages ago and upset that it's happened to me.

What interested me the most was the fact that it is connected to PCOS which I have got. Just another kick in the stomach from the evil condition which makes it extremely hard work to conceive and costs me a small fortune in waxing bills. I'm just waiting for the next thing for it to throw at me

It would be lovely to hear from women who have successfully breastfed with this condition. Also wondering how effective domperidone is? I'm seeing my GP on Weds for my 6 week check so will be asking for some......

If there are any BFing councellors out there who have come across this condition I would love to read about your experiences

Hiya
I believe I have this also- I had never even heard of the condition before I began attempting to breastfeed and couldn't- read the La Leache book 'making more milk' and it's detailed in thre along with photos, and I thought, wow! That's me! Like you, just thought I had odd shaped boobs, accentuated by the fact that I lost a lot of weight in my early twenties. I however did have a breast reduction/ uplift and I regret that more than anything, now I'm finding it so hard to breastfeed.

My DD is also 5 weeks and I'm still trying. Pumping, constant feeding, fenugreek, domperidone etc. And although my supply is undoubtedly biger than it was 4 weeks ago, (when we found out poor DD had lost 21% BW due to no milk ) it's still nowhere near enough, and am almost fully topping up with formula. FWIW domperidone has helped me quite a bit (though I found it very hard to get it prescribed despite being a neonatal nurse and knowing all about it), I also found that taking an iron supplement boosted my supply.

The worst thing is not knowing what caused my supply problems- the reduction (when I had it surgeon assured me it wouldn't affect my ability to breastfeed) or this underlying problem. So I have guilt on all levels

Will keep going- have come to the conclusion that any breastmilk is better than none, and besides all that, I feel strongly that the psychological benefits of breastfeeding for me and DD are just as important as the nutritional value, so even if my supply dwindles to nothing I will continue to comfort her with the breast. Still unbelievably gutting to not be able to feed exclusively though. I would give anthing.

Hi firstontheway
It really is heartbreaking isn't it I would also give anything to exclusively bf.

Don't feel guilty, you were led to believe you would still be able to do it. It most definitely is not your fault although I completely understand that you want to blame yourself. I also feel the guilt even though it's completely out of my hands.

I get so unbelievably jealous of women who can bf successfully. I have a friend who can express bottle fulls in about 10 minutes and the same time as feeding he baby girl. She just makes it sound so easy

I hate having to prepare bottles all the time, I should be able to just put him on me and away we go!
I'm beginning to wonder if we can get formula on prescription as it's a huge expense we shouldn't need to have. It's not like we have a choice is it? I might ask the GP on Weds.

It's comforting to know domperidone helped you. Also interesting about the iron supplement. I hope I don't have trouble getting it prescribed.

Argh I just wrote a really long reply and lost it!!

Have just read the original thread that started this one off

Can totally empathise with the jealousy of women who breastfeed without problems. I have two friends who've given birth in the same month as me, both exclusively breastfeeding withoout a problem- which is great for them, but it's so hard to be happy that things are going well for them to the point that I now avoid seeing them. I just can't bear to watch them feeding, it destroys me. I feed her for an hour and then get out this gigantic formula bottle and it makes it all seem pointless tbh.

I really hope you get the domperidone prescribed too- it made a big difference for me. But it was very hardto get, I had to see four different doctors and even now I'm prescribed a small dose and have to buy motilum at hideous expense to increase it to the reccomended dose! Hope you're lucky first time. Just make sure you go in there well clued up and prepared to argue, as many doctors don't even KNOW that it increases milk supply and are extremely wary of prescribing high amounts! I took this research with me;

one
two
three
four

and this book. Which I would thoroughly recommend anyway, I borrowed a copy from a breastfeeding cafe and have now bought my own it's so good. This is where I first heard about tubular hypoplastic breasts and realised I had them from the diagrams and descriptions. It also has an excellent section in the back about comping to terms with not making enough milk. I read it and jsut thought yes, that makes so much sense! About anger, jealousy, inadequacy, resentment of other mothers etc (I'm making myself sound like a lovely person aren't I!)

I've never heard of formula being prescribed though, unless it's a special hypoallergenic one, not plain formula. The expense is crippling though, isn't it. I had a big temper tantrum outburst yesterday and added up all this cost and it's ridiculous. I've bought 1 electric and one manual pump, hired a hospital grade pump at £65 a month, spending £2 a day increasing my domperidone dose to what it needs to buy, bought about 5 of the hideously expensive adiri bottles (about £12 each and keep splitting!!) as we had problems initially with her latching on after bottles, books about milk supply and breast reduction PLUS the adittional cost of formula, a steriliser, milton tablets etc etc, have already spent hundreds

Also DD is going through a growth spurt at the moment and feeds are quite unpredictable and twice yesterday I had to listen to her screaming her little heart out while I made up her bottle, unable to do anything as she was so hungry sje wouldn't even take the breast

Sorry to stumble in to your thread ladies but I was intrigued by the title and will be looking at your links with interest. I just wanted to express my admiration for your determination and think your point about bf being about more than food (comfort, closeness etc) is so important, firstontheway.

Wow, thanks firstontheway
Damn, my printer is playing up, I will hopefully be able to print out the those pages later. What a lot of money you've spent! There's no way I can spend any more cash.

I'm sorry your DD wouldn't take the breast I suppose I can still cling on to the fact that DS is happy to latch on. However he does a lot of pulling and moaning especially on the smaller right boob. It's frustrating for him and for me. Poor thing doesn't understand and I just want to be able to give him what almost everyone else can give their babies

I'm trying to count myself lucky. I have two healthy DS's. We tried so hard to conceive them. I should be happy they're here. Still hurts that I can barely perform a basic human function though Especially after all the heartache of conception, then having 2 c-sections (again! See, I can't even manage to give birth naturally!)

Hi MamacitaGordita - You're very welcome, I think the more people who understand it the better. If more people knew about it then I would've known when I had DS1

Thanks fruity - I think this is a very good idea. I wish it was not such a secret Please, please don't feel guilty about this, anyone. I would have taken an augmentation in a heartbeat a few years ago, and in fact still would, if it was free and not too painful
It's about 66% sure that your augmentation had nothing to do with the problems - only 33% of women with this condition can BF exclusively. You always hear 'only 1% of women physically can't BF' - I had no idea that 1% included me (Although I had some milk, so I guess it didn't)
I just wish one single MW or HV had recognised it. Do they really not know about this? It's pretty bloody obvious when you look at me. Just please try not to feel too let down by your breasts, you know, you could have a uterus that doesn't work, or legs, or eyes...all of those would be much worse. At least our babies have access to perfectly 'good enough' formula milk and with our love and care they will thrive perfectly well. And at least we have babies

I agree, it seems very odd that so few HPs know about this condition really. Obviously now I've had the surgery you can't tell, but I can't tell you the amnount of doctors/ surgeons who examined me before I was put on the NHS waiting list for surgery. Obviously had very odd shaped boobs and no-one identified them?

FnN- Thank God my baby started latching again as soon as we used these bottles, so they were worth every penny! She also does the pulling/ groaning and it really is heartbreaking isn't it? Sometimes she gets so hungry and distressed trying to latch on and I feel mean encouraging her, as all she wants is something to eat.

You are quite right though Kat- and I'd never looked at it like that before- that perhaps better to not have breasts that work properly than something else. We were graced in that we had no problems concieveing our baby (FnN ) and I do feel unbelievably thankful of that. Likewise, my mum mentioned that hundreds of years ago our babies may well have died had we not been able to feed them or afford a wet nurse, so I am glad that while it is a poor second, formula is available and our babies are thriving and growing healthy on it Somehow though, despite all of that, I can't stop that feeling of guilt and pure sadness that I'm unable to feed her myself. It's just so painful not being able to do this one thing for my baby.

Very good luck at the doctor today FruitynNutty- hope you get the domperidone and an explanation as to why this wasn't picked up ante/post natally. Please don't feel bad about your C-sections, you went through 9 months (of hell if your pregnancy was anything like mine!) making every last hair, fingernail and eyelash on your DSs body, the birth day is a tiny, quite unimportant part of that process. If your body wasn't designed to give birth you wouldn't have got that far

Ladies - keep going! I do know women who have had all this to contend with, and got to two years! :-)

Equally, I know some who didn't make it for very long - but every day they made it, made them feel wonderful. Struggle is always rewarded. Just make sure you get some space and time, to talk about how you feel about the loss of a happy nursing relationship. Don't let anyone take your experience away from you!

On top of domperidone, the herb Goat's Rue has got a good reputation for encouraging tissue growth. Something for you to look into and research. Domperidone can make a difference, and you can get it prescribed off-licence by the GP - I know someone who had got them to do it. But it's not a magic wand - you do need to have enough tissue in the first place, for it to make a difference. :-)

Topping up with formula isn't the end of the world, when you have no choice at all. But having your baby to the breast, for at least some of the day, is worth so much to both of you! You can always feed formula in an SNS, if you aren't getting any breast feeding at all. I know it's a total faff - but it can get you some suckling time when you need it most.

Keep going Mamas! You're a marvel! Sticking it out and slogging on, when no doubt eveyone is telling you "It doesn't matter!" Think how proud your babies will be of you, when they grow up! How lucky they were, to have you as their Mum!

www.kellymom.com/herbal/milksupply/herbal-rem_f.html

Well what a waste of time that was, GP very unsympathetic. Didn't take me seriously at all. Said she can't prescribe Domperidone as it's not in her book . She said very matter of factly "Just supplement with formula" She just told me what I know already, drink more water, keep feeding etc...
I'm going to speak to the health visitor tomorrow when I get him weighed, see if she can help me.
Now I'm thinking is it all worth it? I haven't got spare cash to be buying lots of remedies, my only hope would be if I was prescribed domperidone. If I give up now I'll regret it but it's so draining. It takes me twice as long to feed because I give him half an hour of me then it takes 20 minutes to get through a bottle. This is nearly every 2 hours! Although he's much better at night thank god!

Thanks for the lovely words of wisdom firstontheway and morgangee, it means a lot, and made me cry (but in a good way)

Stupid GP. Did you tell her about the HTB? Did she believe you? Did you take the documents? The advice you normally give does not apply here - and to just advise to supplement is so unhelpful. Can you see another GP? I don't know how it works.

Yes I told her about it. She was just sitting there smiling (almost grinning). I swear she thought I was a loon. I took all the documents which she skim read. She really wasn't interested.
I think I need a second opinion.
I've spent the day in a rage

I would. I swear, half the time GPs have no idea what they are doing. They always seem to be looking things up

Oh poor you
Am not suprised though, unfortunately GPs are notoriously rubbish for prescribing things like this. As I said I had to see quite a few GPs, some of whom were terrible (seemed to think that 25% body weight loss was acceptable! And refused to believe I had a problem and was clearly of the 'every woman can breastfeed if she keeps putting baby to braest often enough' school of thought) until I found one willing to prescribe it. Keep trying, I know it's so so tempting to give up (and no-one could blame you!) when you're hitting brick wall after brick wall and nothing seems to make a difference, but remember it's not just about food, it's about love and attention for your DS, and the milk is an added bonus. Our love isn't measured in how many ounces of milk we make for our babies.

Morgangee, what a lovely post, thank you
Very interesting about the Goat's Rue, I'll be looking into that.

Health visitor couldn't help me today either

What did the HV say?

Not a lot really, just looked all sympathetic (Which is more than I can say for GP!). I asked if formula can be prescribed as I have no choice but to give it to him but she said only people on benefits can get it prescribed If I didn't give him formula he wouldn't thrive though! Bloody ridiculous. She was nice though so at least that's something

I'd like to go down the herbal route but, my god, it's soooo expensive

It's so bloody stupid, I saw an advert for motilium on tv today - it's not like it's dangerous, so why can't they just prescribe it?

My baby boy is starting to refuse me He's only 6 weeks old
My fault for giving him too many bottles of formula.
I might try and have a weekend of feeding to get him back. Still having the bottles at night though so I get some sleep. I've got the next three days off work so I need to take advantage.
It's so heartbreaking to have him pulling off me all the time

Sorry, couldn't get to the computer over the weekend...

FruitynNutty, poor you
How did the feeding marathon go over the weekend? If he's still being fussy, let me know and I'll send you one of these bottles I was talking about- they may not work for you but they really did help my DD latch on again once she'd decided the bottle was easier.

Have you decided to see another Dr about the domperidone? If you can bear it, and you still want to try, it really is worth it to keep pushing.

We're in the same situation as before. Keep getting arsey comments from various people, MIL, my mum's friends etc (visited them over the weekend) about how she just 'doesn't like your milk' and wants the bottle (while I'm fighting trying to get her latched on before topping up). And when I gave her a 10ml bottle of EBM yesterday (which I was VERY proud of, expressed over two sittings though) my friend asked what the point was when she saw the 120ml formuls bottle I gave after

first - That is so kind of you but unfortunately whatever milk I did have is going
I'm losing the will now tbh. I'm absolutely devestated but I really can't cope with the stress of pursuing it even more. I've been back at work (I'm a Childminder) since baby was 4 weeks old so am rushed off my feet anyway. If only I had time to make it work

I'm trying to concentrate on how lucky I am to have him. However, the bottles/formula are a constant reminder. I'm not sure how I'll cope when friends of mine have their babies and start BFing. Force a smile I suppose .

How awful for you to receive those comments . I'm lucky, I've got very sympathetic friends/family. They knew how desperate I was to BF and I've told them why I can't do it.

I'm hoping with time I'll come to terms with it.
I admire you so much for being so strong and battling on. How old is your lo again? I'm sure you've said before

Very nu-mumsnetty (((hug)))

My DD is around the same age as your son I think- was 6 weeks on Sat. Went for our 6 weeks check today and she's bounded up to the 9th centile

I can't even imagine being back at work right now, am in awe! My days are fully taken up with one quite demanding child, let alone needing to look after more... I babysat yesterday for a friend of mine's DD (2.3yrs) while she was at work and it was a nightmare- am very impressed!

I'm sorry things arent looking great for you FWIW I have VERY little milk, literally about 5mls over both full breasts I think, so please don't feel alone. It really is heartbreaking I know. And I'm sure will be tough when you see friends breastfeeding (am avoiding one in particular as it's very upsetting) but you have done an AMAZING job. While most people seem bemused as to why I'm bothering, my DH has become incredibly supportive- telling him about my friend's comment yesterday he reminded me how so many babies get no milk whatsoever, and every last drop counts. You've carried on for 6/7 incredibly tough weeks when you could have given up immediately, and at least you can look back and know that you tried, and couldn't have done anything more.

Thanks for the hug and the kind words
I feel like, if I hadn't had to go back to work so soon or if I could afford to buy all the natural remedies then I could have done a lot better.
I know my baby's had a good start but I've realised it's to do with me not him. I sort of feel like I've been robbed of my womanhood or something. Especially as I have PCOS and struggled to conceive then couldn't manage to give birth naturally (something I was desperate to do with DS2).
Anyway, I'm going to have to get over it now. There's no point in dwelling over it.

To make mattes worse, the Hot Milk bras I ordered ages ago (before I knew about the hypoplastic boobs) turned up today They look really nice too Sod it, I'll still wear them

Hi FruityNutty (It's me, firstontheway )

Just wondered how you were getting on with it all, I know the thread on AIBU upset you- me too. Feel like I really need to stay away from those threads lol!

I'm here!

A whole month since I last posted - slap on the wrist for fruity!

I'm feeling alright at the moment, yes that thread really upset me. My own fault really but I was hoping to show that stupid bint that we're not all as blessed as her - obviously she ignored me completely. Luckily I think it was just mainly her that was completely and utterly deluded

I was talking to one of the mum's this morning who was telling me about this hormone she's on to control her anger due to PCOS (and too much testosterone). Her boobs have filled with milk because of this hormone she's taking!
Well, I wish my GP had told me about this magic hormone Still, it probably wouldn't have worked, I imagine we would still need enough of the tissue to produce it? I don't know. It's a bit late now anyway. Baby Jack is in a nice little routine now with his formula. Really don't want to mess that up as I'm sometimes getting a full night's sleep!

How are you first? or is it You now?

Gah, after stalking you out my internet broke lol

Glad you're okay though, and that Jack's (cute name!) doing well VERY impressed he's sleeping through! Had 3 nights in a row where Samaya slept from 8 till 4 ish, then last night woke up 3 times- I feel so cheated!

Grr that thread really hurt. I just know the threads that are going to end badly, with me getting really upset and hurt, but somehow just have to read them anyway, it's ridiculous. Felt the same about the 'smug' thread, as soon as someone mentioned bottles feeding I should've hidden it, but just had to stay to witness the bunfight

I wonder what hormone your friend was on? Tbh, I think you're probably right and that it wouldn't have done anything unfortunately- I was on a stupidly high dose of domperidone and it really made minimal difference, if any at all. It just frustrates me the way HCPs didn't seem to want to bother with us though. I saw so many HVs/ GPs and really no-one had any idea what the condition was, let alone how to treat it. All you get is 'if you feed enough, the milk will come!' So frustrating.

I am feelingf slightly better though, mostly. Occasionally have a really good cry in the evenings, and a vent to DH, but all in all she's doing so well I can't complain. I do think she's starting to get exzema though on her ears and cheeks One of the main reasons I wanted to bfeed was because I have asthma/ exzema and they run in DH's family also so desperately wanted to help avoid that for Samaya. Even though I was bfed and DH's bro was bfed and we have multiple allergies, I'll always wonder 'what if' if she ends up with them.

How's Jack's weight doing now? I had May weighed on Thu and she's 4.7kg!! Just a bit abouve the 9th centile- not too bad for a baby that dropped down to the 0.4th