Posterior tongue tie AND mammary hypoplasia

[Ashmum0304]

I’ve posted a couple of times on here about my daughters slow weight gain and had great support so here goes again!

After 9 weeks of worry about my daughters slow weight gain and getting various vague answers and limited advice, I’ve finally been able to see an IBCLC face to face! She has diagnosed a significant posterior tongue tie in my daughter and mammary hypoplasia in me.
Thankfully despite these issues my daughter has remained a bright happy baby who produces loads of wet and dirty nappies 😊
But now she has some catching up to do as has dropped from 91st centile to just below 25th.
We’re hoping to get the tongue tie divided and the IBCLC is going to ask my GP to prescribe domperidone for me. Along with the obvious BF as much as poss to maximise supply.
In the meantime I’m topping up with formula.
Does anyone have any experience with either issue and particularly if anyone’s managed to exclusively (or mostly) breastfeed with mammary hypoplasia...I’m hoping once tongue tie is sorted we’ll be able to slowly reduce formula but don’t know if this is realistic.

Thanks in advance!

Hi! I only have experience with posterior tongue tie, which was diagnosed when DS was 4 weeks. The midwives didn't agree it was an issue even though he wasn't gaining enough weight despite feeding for an hour every hour, so I went to a private specialist and she snipped it when he was 6 weeks (she gave two weeks of trying different BF techniques which didn't make a difference). So for the first 7/8 weeks I would feed him on one side for 30 mins and pump from the other, then immediately top him up with the expressed breast milk from the bottle, and if he was still hungry a little extra formula. Because we did it this way my supply did seem to keep up with his needs, he was probably only drinking about 20ml formula a feed. So maybe you could start trying that way to boost your supply whilst you wait for the tongue tie to be sorted?
Once his tongue had been divided, I'd say it took about 2 weeks and then he didn't need any bottle top ups at all. In fact, he started flat out refusing a bottle, which was a whole other problem, lol. Pretty quickly he started getting faster and faster at feeding.
I was thinking how much more stressful it all would have been in lockdown, with seeing specialists difficult etc. I'm glad you managed to get some help!

This was me, to a tee.

Tongue tie cut pretty quickly and we fed using a supplemental nursing system for a while, then mix fed. We mix fed until about 17 months, when I was about to have my second child.

To be honest it was emotionally fairly brutal - after an EMCS to be faced with crappy boobs which I already wasn’t too happy with as they looked funny was really hard. DD was a crap sleeper and by the time we fed from both boobs, pumped and then topped up there wasn’t time to do anything else. That said, we didn’t have the same degree of weight loss - around 10% birth weight. Weight gain was fine once we started topping up.

I wanted to reduce to no formula top ups but it didn’t happen - supply just wasn’t there.

Also, when I had my second child I just didn’t have the time to spend every waking minute doing something feeding related, so he was mix fed from the start and only breastfed for about 6-9months.

Sorry to not be more optimistic. It was hard, so cut yourself some slack.

I'm glad to read this, I've just realised the reason for my very strange shaped boobs sounds exactly like hypoplasia/tubular breasts after reading up on the best way to establish breastfeeding after a c section, and saw a picture of a woman whose breasts look like mine. I've got PCOS so it makes sense, my identical twin is the same.

I'm only 16 weeks so any and all information and experience is great to read. Did you find it hard to get Domperidone prescribed? I've read that taking progesterone during pregnancy can help develop mature breast tissue but not sure if that's able to be prescribed in the UK or not.

It's reassuring to know if others in the same boat, even if it's not a nice one to be in.