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Infant feeding

Get advice and support with infant feeding from other users here.

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

71 replies

FruitynNutty · 27/04/2009 14:26

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

OP posts:
weasle · 04/07/2009 12:13

nitnat

could you go and see a local bf support group and speak to a counsellor? We had quite a few pg women coming to one group i used to go to. you could see if you could have a private word with the counsellor about your concerns and see if she has any experience of this. There may also be a lactation consultant locally, they usually have further qualifications .

Also, then if you do have problems the local supporters aren't total strangers for you to have to contact at an emotionally and physically difficult time after childbirth.

It might work out fine for you, keep an open and positive mind . For me realising what it is has helped a lot. this looks a good book.

Good luck and congratualtions on your pregnancy.

weasle · 04/07/2009 12:40

i have also just found this research paper

which contains this encouraging remark
"Even with the more severe types of hypoplasia, some women progress to full milk production and thus can be encouraged to keep stimulation and draining the breasts."

So it is clearly worth trying! People have found benefit with drugs to increase milk production such as domperidone and fenugreek (a herbal supplement).

ObsidianBlackbirdMcNight · 08/07/2009 20:40

nitnat
please arm yourself with information and go to the doctor to ask for a prescription of domperidone. You may have no problem (1/3 of women with THB don't) but if you want to BF you will need to be prepared from the beginning. Get real, proper, RL help with latching and positioning from day one and as soon as your milk comes in, try expressing, with an electric pump if you can lay your hands on one. You need to stimulate the mammary tissue you have to produce maximum and then more. I think if you stimulate it lots you can start to produce more, even without galactogogues. Worth a try. But the main thing is to remember that any BM is a gift even if you have to supplement, and if you do have to supplement/ff, you are not a failure and your baby will be just wonderful regardless!

ObsidianBlackbirdMcNight · 08/07/2009 20:45

Oh I googled THB and this thread appeared at the bottom of the first page! How great is that! I honestly feel like we could be helping people

you · 09/07/2009 11:03

Ooo that is nice- but a bit sad there are obviously so few sites about it

Nitnat, the book weasle recomended is excellent. Really really good, and even better if you get it now and have a read through so you don't need to do so in a blind panic once your baby's here . I produced colostrum during my pregnancy (though never leaked) but had very little milk and my baby lost an awful lot of weight. I'm not saying that to scare you and many women are able to brestfeed succesfully even with THB, but if I could go back in time I'd make sure I was aware of signs to look for that baby is feeding well and getting enough milk. For example, wet nappies, poos changing colour etc. However, don't be worried if baby doesn't seem settled or full after feeding particularly, or if you seem to be feeding non stop- this is normal even with mums who have an abundance of milk!

I also wish I had seen a bfc before birth, and got together useful numbers eg) a bf cafe, LLL, somewhere to rent a breast pump etc so I didn't have to struggle doing this with a newborn. And if all else fails, domperidone did help me to mix feed up till afew weeks ago (DD now 16 weeks) so is well worth a shot

you · 15/07/2009 11:30

Right, here's the thing; I can't get over it. I just can't and it's getting ridiculous. I have a beautiful baby girl who's thriving and yet I can't stop this self indulgent wallowing.

I feel guilty ALL THE TIME. I have good day and bad days but it's always there, every time I give her a bottle and I'm worried it's going to make me depressed. I check out the feeding boards contiuously, obsessively read anything vaguely related to infant feeding, still cry quite often at night (poor DH!), I don't know how to get over it really.

And it's made me never want more children, purely because I don't think I could go through the guilt and heartbreak again. I manically research things that might make a difference 'next time' and can't find anything.

So. Where from here?

ObsidianBlackbirdMcNight · 16/07/2009 07:52

Ok come on now. There is nothing to feel guilty about. You have a healthy baby girl and you must stop beating yourself up! You haven't chosen this, it's just life.

When you have another baby, you never know how BF will go. Galactagogues and a decent breast pump might help but if they don't you don't need to go through all the pain and guilt again as you know what the problem is - forewarned is forearmed.

I don't know what to say hon - your baby is wonderful and it's not your fault.

Fruitbatlings · 13/12/2009 21:11

awww You

How have you been lately?

Trust me to go looking for trouble with those BFing threads

you · 13/12/2009 21:24
Fruitbatlings · 14/12/2009 12:44

I also feel the same way about friends BFing - HUGE jealousy. When they go on about how full they are or "oh, look he/she's been a bit sick" "wow, look how quick he/she feeds now" "oh I can feel my milk coming in" "I seem to have so much milk, my boobs are like water melons" - NOT HELPING!!!!!

I have GOT to snap out of this.

I daren't let it all out in front of DH, he doesn't get it at all, the most unsensitive person alive. He was the same when we were struggling to get pregnant in the first place then the same again when I was fighting the hospital for a homebirth then again to use the MLU and birthing pool (for VBAC) - little bugger was breech in the end anyway so ended up with an ELCS, but that's another story

That's why I use MN to let it all out, it usually ends up being let out on an already heated discussion though Then I get myself into trouble.

Ho hum.....

Bloopy · 22/02/2010 22:59

Hey everyone,

I enjoyed reading all your stories, ty for sharing.

I am pretty sure (judging by the pictures) that my breasts fit the description. I am currently 35 weeks pregnant, I haven't noticed any breast enlargement, my breasts fit into a small A sized bra. I was really excited when I saw colostrum though... as my baby will benefit from a little of that.

I'm going to try Goat's Rue at 36 weeks, and mother's milk tea post partum, I may add fenugreek to the list... I'm not sure about Domperidon or however you spell it yet, I'm a little leary of those kinds of drugs.

I'm also going to try the pumping after feedings, feeding on cue, every 2 hours, skin to skin contact, as good of a diet as possible and lots of water.

I figure if that doesn't work, formula will nourish my baby wonderfully as well, as I think babies are experts at fully utilizing all the nutrients they recieve.

My Mom could not breast feed myself and my Brother and we both turned out fabulous.

I guess sometimes its hard to not take things personally... "my breasts don't work... so therefore I'm inadequate... I've failed my baby bla bla bla". Nothing could be further from the truth. I love my Mom more than anything, she is wonderful and nurturing and I don't think we could be closer... we can also still run fast and jump on trampolines without bras like the children that we still are... hehe.

I'll let all of you know how and if breastfeeding works out for me... but I promise you that however it turns out, I know I will have tried my best, and not feel ashamed or like less of a person for having to feed my baby with formula with the most love I can give.

ObsidianBlackbirdMcNight · 23/02/2010 10:53

Hi Bloopy
what a great post. You are absolutely right of course that you will still be a great mum whatever happens and from my own experience I can tell you it is NOT WORTH making yourself unhappy and your baby ill because you are desperate to exbf. That's what I did and it ruined the first 3 months for me. My friends now comment on what a laid back mum I am but how I was a bag of stress for the first few months - and it was all because of bf. Of course I didn't know then about THB.

You may have problems latching the baby at first, my DS was separeted from me for sirst few hours then was a lazy sucker, so he didn't want to latch. Then when the milk came in there wasn't enough to encourage him I think. Really, honestly, get good help from a proper BFC from the start. I know one that I will be booking for the earliest day I can next time! she can come and see me in hospital if possible. Just someone to sit with you for as long as it takes who doesn't have anywhere else to be.

Finally, congratulations!

YOU - sorry to hear you got the PND. I think it's easily done when you feel like you have let your baby down. I now feel like I'm over that and I'm a good mum which is far more important than what milk sustained him in the first 6 months oif life - after all we have to be good parents for the rest of our lives! BF just seems like such an important factor of being a good mum in the beginning - but I really don't think it is. Can I ask, does being muslim have anything to do with your feelings of inadequacy? I know the prophet advised bf until 2 yo and was wondering whether anyone had been making you feel crappy for not doing so? I remember being asked why I had stopped many times when DS was undedr 6mo (not by the ILs) and people really didn't get it. If I had been feeling more fragile it would really have got to me.

theborrower · 27/09/2010 22:29

Hi everyone,
Just found this post after searching for domperidone on mumsnet. God, I feel just like you! Thanks for this thread.

My baby was born by emergency C section 8 weeks ago and wouldn't latch on. I had to hand express colostrum and feed her it with a syringe and top up with formula too (I was told she couldn't afford to lose any of her birth weight as she was 5lb 4oz). After a couple of weeks she managed to latch on the odd time for a short time, then at about 3 weeks she started latching on a bit more frequently but not for very long.

We've been going to the local BF clinic since she was a week old, and on their advice were trying her on the breast, topping up then expressing. We were referred to Dianne West's Low Milk Supply website and have done all the breast compression techniques, tried hot compresses, pumping in the bath, fennel tea, milk thistle and fenugreek but we've never managed to up the amount that I express (never more than an ounce, normally about 10 ml and that takes 20 minutes).

She was also diagnosed with a tongue tie that was only fixed last week, and while she now seems to be able to feed for 30 minutes or so, she still takes exactly the same amount of formula as she would if not having been on the breast at all.

See other thread www.mumsnet.com/Talk/breast_and_bottle_feeding/1046539-BF-issues-from-day-1-incl-undiagnosed-tongue-tie-is

I always thought that Bfing was simply 'supply - demand' and was told that if you keep putting baby on the breast and pumping you can up your supply. I feel like I've tried everything - pumping 8 times a day on top of Bfing (and FFing), but still have hardly any milk. My breasts hardly changed in size when i was pregnant, I didn't feel my milk come in - they never felt huge or anything like that, I never leak etc. So to now be told that there may be something in me that means I just don't make enough milk - well, god, it makes me feel like a total failure, even though I know I've given it a really good shot.

It's comforting to know that I'm not the only woman by far to have this problem, even though I still feel unbelievably crappy. But any tips on how to get over it will be welcome :-)

MoonFaceMama · 27/09/2010 23:04

Theborrower, i haven't seen this thread before now, i wasn't on mn when it was originally around, but have just read some of it and found it sad and inspiring. Another mner told me about this condition recently and i am Shock that so little is known about it or treatments for it. The mner i mentioned (called cloudydays) compared it to all the research and developent that went into viagra, which is used to treat another non life threatening condition that also can undermine ones sense of gender. And when i thought of it like that i was so Angry and Sad for all the women whos desire to bf their babies is considered less important than a mans desire to maintain an erection.

You sound like a wonderful mum. Any amount of bm is a bennefit to your lo and you deserve to be super proud of yourself for pursueing so hard something because it is important for you.

Best of luck, i really hope you find some help on here. Smile

theborrower · 28/09/2010 10:55

Thanks MoonFaceMama but sorry, I should clarify a little - I don't think I have TH Breasts, but that I seem to have all the problems associated with it - just can't make more milk - and can absolutely empathise with these women on the website. I thought I was a freak that I couldn't make more milk despite my best efforts but it seems that I'm not the only one.

Re the domperidone - the dr I saw today is going to look into it for me. It really seems that hardly any doctors know anything about it.

MoonFaceMama · 28/09/2010 12:03

I hope you manage to get a prescription. Smile

scottishsabby · 01/11/2010 18:15

I've struggled for three years since my dd was born to understand why I couldn't breast feed. I was unlucky that at one week old we ended back in the hospital due to her weight lose. My GP who delivered her was great and prescribed domperidone right away. I've felt guilty for all this time and finally now that I'm pregnant with my second have I found out it wasn't me. I'm 16 weeks and have had no growth, now I have some information I hope at my next dr appt I can get some answers. To all the girls out there, thanks for keeping up with feeding despite difficulties, you truly are and inspiration.

theborrower · 02/11/2010 09:55

The Doctor didn't get back to me about the domperidone and I didn't persue it - at that point 8 weeks of trying to BF, followed by a bottle feed then expressing had really taken its toll on me, and I didn't want to keep going with it with no guarantee the regime would eventually work. What we do now is we BF in the morning and again in the evening, when we're more relaxed and have plenty of time to top up after if she needs it (and she does after a short while), and bottle feed the rest of the day. This seems to be working out for us at the moment, although I can't help but feel pangs of jealousy when I'm out and about and see other mums breastfeeding and I'm getting the bottle out. But we're doing what we can and I feel better that I've not 'given up' completely.

Interestingly, as soon as we started this new pattern of feeding (I didn't gradually drop BFs, I just went straight to it) my breasts didn't feel uncomfortable at all - ok, maybe a little bit for the first day - but no engorgement, pain, leaking etc. I'm still convinced that something just didn't go right with my breasts/milk in the first instance. Whenever I read stuff about BFing and engorgement/taking a week to drop feeds etc I think "Yeah yeah, what a load of rubbish" - just can't relate to it at all.

Scottishsabby - I'd be really interested to hear what your doctor says - please post again.

belpeep · 07/03/2011 00:36

I wish I had found this thread months ago before my DS2 was born!!!

My DS1 is nearly 4 and when I tried everything to feed him I saw a lactation consultant when DS1 was 4 weeks old and they told me I had hypoplastic breasts and that I might as well put him completely on formula as I had tried so many things and nothing was helping my supply.

Before my DS2 was born in Sept I knew I would probably not be able to feed him so was prepared for him to go completely onto formula too but thought I would give b/feeding a go.

I never thought I would be so upset this time that it wasnt working as I already knew what the problem was and I couldnt fix it. I was on domperidone, I was taking fenugreek and blessed thistle, I was eating lactation cookies, expressing after every feed and using a supply line / SNS but even from about 4 days old I was still having to supplement with formula. By 5 weeks old it was taking a toll and I still had a 3 year old to take care of so I stopped breastfeeding and DS2 has been completely on formula since then.

He is 5 months old and still to this day it kills me that I cant feed him. I have a lot of friends with babies the same age as DS2 and 90% of them breasfeed and I hate that I can't. I hate feeding DS2 in public with people thinking "Oh she's bottle feeding. She either didnt bother with breastfeeding or it all got to hard for her." .... chances are people arent thinking that though LOL

I have never actually met or spoken to anyone who has had this condition so hopefully some of you are still checking this tread.

cloudydays · 07/03/2011 04:05

Hi belpeep :)

There is another (shorter, but more recent) thread on this subject here in case you're interested.

I just wanted to respond to your post because I too have this condition and I can relate to how you're feeling. I had an awful time coming to terms with not being able to ebf my dd (still haven't quite gotten over it I guess, which is why I'm still lurking here!).

I hope that if I have another baby my milk supply will have improved. But I console myself by thinking that even if that isn't the case, at least I will be more prepared for the practical and emotional implications of needing to bottle feed. So when I read that for you, the experience with ds2 was as difficult as the first time around, both in the inability to produce enough milk and in the emotional toll it took, I really felt for you.

Your feelings about bottlefeeding in public really resonate with me. I remember dreading the well-meaning question "are you feeding her yourself?". Firstly, it annoys me that it's put that way because it makes it sound like if you're not breastfeeding you may as well be handing the baby off to any random stranger with a bottle. But also, I felt that I had only three options when someone asked this (and so many people did!):

I could say yes, and hope that they didn't think I was a liar if they noticed the Aptamil cartons poking out of my diaper bag.

I could say that I was combo-feeding (true) and let them make whatever assumptions they wanted about whether I was uneducated/uncaring/unbothered as a mother.

Or I could get into a discussion with them about my personal medical history, my feelings of failure at not being able to ebf, and various other related topics that were frankly none of their business.

Even when I did go for the third option and explain the problem, I often felt that I wasn't believed because most people haven't heard of breast hypoplasia and, apparently among those who have heard of it there is some 'controversy' over whether it actually exists.

I had done all the prenatal research and had a lot of my sense of "good mother"hood invested in being able to ebf my baby, so not being able to do that was very, very tough. But if I'm honest, feeling that others didn't believe me, or that they thought I was being overly dramatic or making excuses about something so personal and so important to me, was at least equally hurtful.

It's a rotten place to be in. Such an emotive topic, and as bf believers in intention and ff'ers in practice, we can feel so judged by both 'camps'. So I'll tell you what I think you already know:

Some mothers who ff by choice might feel defensive about their feeding choice for a variety of reasons. They may want to believe that there is no difference between cow's milk formula and human breastmilk, and it doesn't matter at all how you feed your baby. They are wrong about this, but because they believe it they may judge you for being so bothered by not being able to bf. Their opinions and wrong assumptions about you really don't matter. This is true even if they are relatives, health visitors or GPs.

Some mothers who bf might feel defensive about their feeding choice for a variety of reasons. They may want to believe that nobody really has supply problems, that all breastfeeding issues are surmountable, and/or that the feeding method a mother uses is an indication of how much she loves / is bonded to / cares for the health of her baby. They are wrong about this, but because they believe it they may judge you for bottle feeding. Their opinions and wrong assumptions about you really don't matter. This is true even if they are lactation consultants, friends, or MN feeding board regulars.

You are the only person who really knows how much you love your sons, how much you want to give them the best of everything, and how much it hurt you when you weren't able to feed them in the way you wanted to. You must know, intellectually, that you could not have changed this and that it's nothing for you to feel guilty about. I know that accepting that emotionally is a lot harder than knowing it's true.

But human bodies are imperfect. Breathing is the most natural thing in the world, yet some people have asthma. Reproduction is the most natural thing in the world, yet some people suffer infertility. Why people insist on discounting conditions like hypoplasia by insisting that "breastfeeding is the most natural thing in the world," I will never understand. It doesn't matter, though. You know that, in your case, it's true that it just didn't work. And I'll bet your sons are thriving anyway, right?

You must not let other people's (real or imagined) misinformed opinions get inside your head and warp your confidence in what you know to be true:

You have not failed your babies, you have done your best with what you had at your disposal. Other mothers who can produce enough milk to ebf might also be doing their best with what they have. They are not doing better than you, they just have more of this one thing to give.

You will have more of other things (a sense of fun? the patience of a saint? an irreverrent sense of humour? love of reading? love of sport? whatever) to give your children than some other mothers will. And those are the things that your boys will grow up to appreciate in you and will remember for the rest of their lives as the things that made their mum, and their childhood, special.

dizzydippy · 10/03/2011 20:37

hi all that are still reading!
I have a little boy coming up for 7 weeks and I have what i recognise as being tubular breasts (dangly things, huge aoreola, big gap between them).
i have managed to mainly breastfeed so far but it has been so so so difficult. he is on my breast pretty much constantly during the day, he falls asleep so i try to put him down somewhere and usually wakes after 10 mins. i do normally get a straight hour at some point in the day where i get to shower and try to tidy a bit of my bombsite of a home!
i'm worried about his growth. while he has gained everytime he is weighed, he's doing so very slowly. he was born on the 75th centile and is now following under or on the 50th centile. while this may sound fine, his length is on the 98th centile (very tall parents) so surely his weight should be on a higher centile to.
he has the right amount of wet nappies and passes dirty nappies often enough to not be worried if you read the guides.
however, i spend a lot of time looking at his fontelle, which is sunken most of the time, a sign of dehydration.
i have had some time away from him where he has been formula fed (i have never had the opportunity to express and store as he needs it all himself!) and i was able to measure that i was producing just a smidge under an oz per hour. this should be enough to satisfy him for his age according to the side of the aptimil pack. however in the same time i was doing that my other half was having to feed him 50% more in formula.
i too have the problem where he feeds until my breasts are fully empty and then he starts to get upset. when he is inconsolable i end up giving him a 2 oz formula top up, and then he is still hungry so i put him back on the breast where he probably doesnt get anything but at least he has calmed down! i havent yet had to top up more than twice in one day.
as he is gaining slowly and his fontelle is often sunk i wanted to start perhaps giving more in formula just so that he is getting what he needs. he is often whiny when being breastfed but my husband said he was an absolute treasure when he was being formula fed! i just worry about the formula as i dont want my supply to decrease, i just want him to be satisfied! does anyone have any methods of combination feeding which still encourages breast milk production?

also, an odd thing to add incase anyone else experienced it. i never had any colustrum, or if i did it was white.

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