No milk & baby hospitalized - pre-existing prolactinoma

[agteacht]

Hi all... long post, bear with me...

My long-awaited little girl arrived on Friday 13th by EMCS.
All seemed to be going well until we went home on day 3 and she became hysterical and frustrated at the breast.

I kept breastfeeding her to encourage her to suckle and to encourage the milk to come in. On day 4 after she cried for the best part of 12-15 hours and I had ruled out wind etc etc and was at my wits end I bought some aptamil pre-mixed bottles and the poor little thing gobbled them down.

I started a pattern of breast - formula - breast for each feed, trying to make her think the milk was coming from my breasts, and assuming the formula anyway was just supplementing.

She actually loves suckling, probably for comfort, it's just the supply that seemed the issue. And I really wanted to breastfeed, even attended a support group pre-birth so I could make contacts for any help I might need with latching etc.

Yesterday (Wednesday), day 5, she was weighed and had lost over 15% of her birth weight. The community midwife sent us to A&E and we ended up in neonatal.

At my insistence they attached me to an electric pump and it turns out I have absolutely no milk at all in my breasts, also no colostrum (there was some colostrum post birth).

It's terrifying because until yesterday I was breastfeeding her - in my head anyway - or at worst breastfeeding just insufficiently.

I have a pre-existing condition called prolactinoma, where your body creates too much prolactin. This actually stopped me getting pregnant for a long time. Once diagnosed I fell pregnant immediately.

Because of this condition I was under consultant care for the pregnancy, in order that my prolactin was monitored. On a couple of occasions I asked about the impact of the condition on breastfeeding (if breastfeeding / pregnancy creates prolactin and you already have excess prolactin then what does this mean). I was told on those occasions that I had nothing to worry about - in fact I would likely have over-supply of milk because of my pre-existing excess prolactin.

However I've been researching this again online and it turns out there are a number of women who have no milk supply because of this condition - from what I can deduce basically the medication taken to lower prolactin to enable pregnancy is likely the cause of this.

Whatever the cause it seems likely to me that I now will not produce any milk.

I'm upset and frustrated at being pushed to breastfeed by the hospital without any warnings this could happen. I'm upset that I was under consultant care and this was not considered. And that when I supplemented with formula I have been made to feel that I have not been feeding her enough - I would never do that on purpose.

I'm pretty confident that we will be discharged in 24 hours because she is gobbling down the milk and will gain weight now that she is not being left hungry. This could have ended so badly however.

On the off chance anyone has any similar experience with absence of lactation, prolactinoma or otherwise I'd love you to share with me.

Also any thoughts on how to get the hospital to listen. It feels no single person is joining the dots here for me, and I, the mum, have unintentionally been left failing my little baby.

PS I have no guilt about moving her to formula - it's a real shame but an impossible situation.

Exactly the same experience a few years ago. They made me feel so guilty first for struggling to breastfeed, and then for persevering so long my dc got very underweight. Not supportive at all and I found it very difficult mentally

Of course a few years in, it makes no difference at all - happy healthy child - so try your best not to dwell on it. As long as they get fed and grow, all is well

Hey @agteacht I remember you from the dec 2019 thread. Sorry to hear you had such a hard time trying to breastfeed. I agree that the drs dismissing your concerns is in no way helpful. I "had" to switch to formula feeding DS a week in as he had lost 13.5% of his birth weight, I never discovered what our issues were though. 3 weeks later he's absolutely thriving, I'm worried I might be overfeeding him but that's another issue. Congrats on your lovely baby.

Congratulations on your new baby!

Firstly, what you can pump is not indicative of your supply. I EBF and the first two weeks trying to pump with a hospital grade electric pump I couldn't get a flipping drop. For a lot of us, pumping is a learned skill for our bodies as no matter the strength, it's very very different to a baby.

Well done on supplementing. Sounds like it wasn't an easy decision.

I would look to either request a debrief or to complain about your care and the ignorance about your condition. You trusted the "experts" and they failed both you and your baby.

Science and medication gave you this perfect healthy baby and science will sustain her! It's awesome that we live in a time where this is even possible so enjoy every moment because before you blink she'll be running around.

@goingtoneedabiggercar if you're worried about overfeeding are you pace feeding baby's bottles?

@SpaceDinosaur I am, he's only 4 weeks though and I feel he's taking a lot, I only increased what he was getting as he was still rooting and unsettled after his feed. He's a big boy though so I think the reason I'm thrown is that he's bigger than a lot of babies his age. A feed takes us about 30 mins which the health visitor said was about right and about the amount of time he would have spent breastfeeding. I make sure to take breaks/allow him to feed with the milk away from the teat to try and recreate let-down etc.

If he's ok in the red book and your HV's trying to instil confidence in you then trust the process deep breath and trust :-)

Possibly daft question, but you are off the prolactin suppressant tablets I assume? If so, your body should make milk just like anyone else (until you go back in the tabs). If the milk isn’t coming, either pumping doesn’t work (as @SpaceDinosauror said) or it’s not coming for another reason, but unlikely to be the prolactinoma - worth getting your hormone levels checked as if your prolactin is high and the rest low you should be making milk, if your pro lactin is low then at least you know what’s going on.

Hey @goingtoneedabiggercar - huge congrats on your DS! You must be so pleased. What a relief to have them in our lives eh ❤️

Sorry to hear you had not a dissimilar experience... did anyone try to get to the bottom of why?
So glad he's doing well now x

@SpaceDinosaur thank you so much. I will ask about a debrief to escalate.

@Pepperama sorry to hear of your experiences

@adagio yes I stopped taking cabergoline when I fell pregnant.
I too am a logical person but I disagree.
Experiences like these suggest a link between prolactinoma and lactation failure

lacted.org/questions/prolactinomas-and-breastfeeding/

However in any case, regardless of cause, FTMs should not be allowed to leave a hospital on the basis that BF will 100% work.

If I was told for example that if there was no milk on day 3 supplement with Xml of formula, if nothing on day 4 then add Yml - something simple like that - I would have fed my child sooner and not ended up in neonatal.

I stupidly continued thinking I was doing the right thing and milk was there somewhere. That is not a responsible or safe way to do this.
I believe now my condition should have raised this possibility further - maybe I'm wrong but maybe I'm right.

I've also since been told that EMCS can delay onset of milk. Where is the different advice therefore for EMCS patients which advises them how to supplement in the case of this delay?

It's this sort of blindness that I find quite worrying and frankly wrong.

Yes, similar experience, although different cause. I don't make milk because I don't have glandular tissue. I didn't know that before I had ds1 and he ended up in neonatal with dehydration and excessive weight loss.

People still like to say things like 'you needed to put him to the breast more', feeding for 19 hours straight is normal', 'pumping isn't an indicator of how much milk you're making'. It drives me absolutely batshit.

It's like saying to a person born with missing limbs:

'It's not possible to be born without legs'
'Well, I don't have legs...'
'No, everybody has legs. You're just not trying hard enough to walk'

It is absolutely fucking rude and hurtful.

There seems to be a blind spot specifically around breastfeeding. That it is biologically possible 100% of the time. When saying 100% of women are/can do (whatever) is obvious bullshit when applied to any other scenario. I've decided it's just another form of oppressive, sexist bullshit women have to deal with and unfortunately other women perpetrate it on each other.

Sorry for the rant this still pisses me off and it's been years.

Totally agree it’s not well known, no one mentioned it to me (I also have a prolactinoma only identified when we couldn’t conceive) and like you I was sent home and left to crack on with it. With hindsight my first was on special measures - not a&e but daily weight monitoring due to losing just over 10% birth weight in the first week. I was lucky to have an easy (ish) birth so was sent home within a couple of hours straight from delivery, so no experience of any support in a hospital or post emcs care. to you and thank god they finally spotted it in time - enjoy your first Christmas with your beautiful baby

Hi @adagio
I am sorry because my message to you came across as snappy and really I shouldn't have,
Especially as you also have prolactinoma

I don't know what your experience was but mine has basically been that with medication I had no issues with it at all - conception issues yes but all solvable. However it feels like there is no proper handle of the impact and that's where I'm getting frustrated.

Thank you for your kind words and support x

Hi @Squashpocket I could have written your post myself word for word. You have absolutely nailed it.

The sad thing is that I so wanted to breastfeed. I read the positive breastfeeding book. I went to a la Leche league group to make connections. I was worried about latching when in reality I didn't even think that absence of milk was a real thing.

Even now they're treating me like I'm stupid - the milk will come. I bet it won't. Have they really never had this before?

I'm also in a shit hospital with no facilities which doesn't help. I'm now 6 days post partum so still bleeding, with section wound to keep clean. My feet have swollen up badly in the hospital heat, there is no shower for me to use and just a shared toilet. That's no ones fault here (I won't mention politicians!!) but my health is also completely being ignored just so I can prove to them I can feed my child for 24 hours. Of course I can feed her, I'm not stupid. I just didn't know I needed formula.

Thank you too for your words which help me express what a blind spot this really is in our system.

I think the only place you will get sensible meaningful professional advice is by talking to an IBCLC certified lactation consultant. I agree that not being able to pump doesn’t mean there is no milk. It looks like there could well be a link between prolactinoma and milk supply, but a CS also won’t be helping milk come in. Then baby could have other issues like tongue tie which could just make everything harder. It may be that breastfeeding isn’t going to work for you, but you might find that easier if you have spoken with someone who really knows and understands breastfeeding. In my experience that is usually not the highly skilled neonatologists or obstetricians, they have other knowledge and skill sets

Hi @foxatthewindow I've had tongue tie check but yes agree on the ibclc. I contacted one privately who, without meeting me, said prolactinoma doesn't impact breastfeeding so I need to find someone who will at least keep that option open.

If baby was having wet and dirty nappies in hospital then there was no indication that you weren't producing. If baby continued to have wet and dirty nappies whilst you were nursing at home then they were certainly getting something so please don't beat yourself up. It may have been less than ideal as a result of your hormone imbalance or even something as simple as a tongue tie or lip tie which affects baby's milk transfer. Ties are incredibly common and directly linked artificial folates (folic acid)

True inability to produce milk is so rare, estimated to only be 0.05% of women.

Sending women home with "top up by xxxx on day 3 if X, X or X sets them up to fail as they're sent home with doubt.

I see your baby had a tie check... with whom?

My baby's was missed by 3 midwives and a Doctor. Finally diagnosed and treated by a private specialist.

Hi @agteacht (are you in Ireland?)

Congratulations on your new baby & so sorry you've had such difficulties.

I am not aware of your condition but wanted to pick up on this:

I've also since been told that EMCS can delay onset of milk. Where is the different advice therefore for EMCS patients which advises them how to supplement in the case of this delay?

This is sort of true. With a CS (of any kind, doesn't have to be emergency!) your milk usually comes in about day 5 rather than day 3. But in effect all it means is that you are still producing colostrum etc and the actual milk will be there when needed.

It can happen with this delay that the baby doesn't get enough nutrition and needs supplementing - but it's not an absolute.

The key indicators are that your baby is producing sufficient wet & dirty nappies. If you're not sure about the wet nappies (it can be hard to tell) try putting a cotton wool ball in her nappy.

If baby hadn't enough wet & dirty nappies, you need to supplement but baby gobbling it down doesn't mean anything, they'll all do that as it's so much easier than b/f'ing for babies.

As others have said, not expressing doesn't mean anything.

If you do want to b/f, encourage cup feeding of formula & offering breast every second feed.

Good luck 💐

Hey @agteacht! I felt so guilty for not continuing bf, but I’ve had fab midwifes who said as long as baby is feeding it doesn’t matter. Read an article about Landon Johnson (google it) and you’ll know what you’ve done now is right. Xx

I didn't have your issue prolactomona but I did have a very long labour emcs and ds ended up back in hospital in the children's ward as he lost 13% of body weight. Although no-one noticed until day 4!
My milk came in on day 5 and I think that was only down to my mother making a big fuss a big to make sure I got a proper bed and the bank nurse who was looking after us taking DS off me for the night so I could sleep.
And I was blamed for my baby losing weight by the community midwives (still angry about it now)
Im very sorry you're going through this the UK treats new mothers appallingly

@SpaceDinosaur
To paraphrase Tim Minchin, to suggest that 0.05% is rare is to severely underestimate both the number of people and things.

Over 600,000 children were born in the UK last year. If the prevalence of lactation failure is 0.05% (debatable), then there are around 300 mothers each year who can't produce milk. It is not inconceivable that these women might find their way to Mumsnet.

OP - I really wouldn't come on Mumsnet for help with lactation failure (if that's what it is). It's is part of the problem and you'll end up feeling like your talking to a brick wall. I would suggest seeing a lactation consultant if you think they have an open mind and getting proper help.

@agteacht thank you, he's amazing. No, nobody tried to find out what was happening, they checked him for tongue tie but I know that these can sometimes get missed. They switched me to expressing for him and my supply seemed good (not enough fro keep up with him now though).

In hindsight what they did when we were readmitted was at best unwind. He had been crying to feed but they had us wandering round the hospital to her back to postnatal. I asked if I could feed him and the midwife wouldn't let me, I didn't want to formula feed at this point but she made DH give him a bottle as I had to be 1 feed ahead with expressing. They gave me a pump and set me up, for the next 2 days they had us in a schedule. I had to pump every 3 hours and DH had to feed the milk I'd previously expressed by bottle. By the end of 2 days he'd gained weight nicely but I hadn't fed my son once, I'd gone from being every meal to being none, I was a mess. When I came home I tried to stick to the schedule to keep expressing but he needed topped up with formula anyway and I missed feeding him so much. The way I felt about it all wasn't ever taken into consideration. I bought more bottles from amazon and a tub of formula from Aldi and we were off. I initially felt very guilty but I feel much better now. He's such a hungry boy that there's no way I could have kept up with him. He was 10lbs 10oz when he was born.

Ultimately though, a fed baby is best - and by the time they are out if baby stage no one knows remembers or cares (apart from you!). That’s not to say don’t get help and support - whatever you need - but don’t beat yourself up whichever way it goes. I say that as someone who did ebf 2 kids. (Second child much much easier - with hindsight the first maybe had a tie or something but with no frame of reference I though 45min plus feeds every half hour were normal, second one had a ten minute feed then went to sleep for an hour - totally different!).

If you can find someone knowledgable to support you it will be worth it.