Why do jaundiced babies have to be given bottles? Sorry long post :(

[Fredfred]

This is a difficult subject to write about for me as I have many feelings of guilt and anger still associated with it, but I really want some answers so I hope that you can help me. Sorry this is going to be long.

I am one of 6 children and we were all ebf until at least 6 months and some of us until the age of 2 years. Therefore it seemed only natural to me that when I had my own children I would ebf. So much so that when I was pregnant with DD1 I didn't buy any bottles or formula in preparation as I just assumed I would ebf.

Well, DD1 was born over 2 years ago following an extremely traumatic labour from which I suffered PTSD. Among other things I had a pph and had 2 blood transfusions (4 units). As a result my milk was extremely slow to come in. DD1 latched on fine and bf was going well, or so I thought. Within hours she developed extremely severe jaundice (probably as a result of the ventouse that was used to get her out on 7 separate attempts- NICE guidelines are 3 attempts I think, but that is another story). Anyway, she was put in an incubator and I was told that as she had jaundice she would have to have top up feeds. I was told that she could have donated breast milk as I didn't want her to have formula (we have lots of allergies in my family). I told the midwife that I had read and been told that giving a baby a bottle if bf was not established could lead to confusion and difficulty with bf. She said 'there is absolutely no evidence of this'. I was too exhausted and drained to argue, so they gave her a top up bottle after every feed. I was told to express every 2 hours which was completely soul destroying as absolutely nothing came out, not once in the week that I was in hospital did I manage to get a single drop from expressing and all I got from the midwives were looks of disbelief when they saw nothing was coming out. :( I did know that DD1 was getting milk though as I could see it round her mouth when she was feeding, but because nothing came out when I was expressing the midwives wouldn't believe me and continued to give her top up bottles.

Well done if you have read this far!

Well, to cut a long story short when we finally got home bf was a nightmare. DD1's appetite had been artificially increased by all the top ups. As well as this I wasn't producing enough milk because of the blood transfusions. She would scream in hunger and I was left sore and bleeding from letting her suck even when there was nothing there. Plus when I tried to feed her she would arch her back and pull away- she didn't want me, she wanted a bottle. This carried on for a week and I saw breastfeeding counsellors and went to a support group before I just couldn't take it anymore and gave her a bottle for one feed. Well, it was amazing, she stopped crying and fell asleep for the first time. From then on, trying to bf was so hard as each time she just wanted a bottle, so I used to trick her by getting her to suck a dummy and then pull it out and put her to the breast quickly which was the only way I could get her to feed. My milk supply dwindled and I had to feed more bottles. I mixed fed for four months like this. By four months I was only BFing at night and by five months my supply just stopped. I had continued to express to try to keep my supply going, but it just didn't work. To add insult to injury, the formula feeds caused her to reflux and she continued to have reflux until she was 11 months old (including with solids- yuk).

Now that I have had DD2 (born 5 months ago) who had no problems and is ebf, I keep thinking of what could've been with DD1 :( It seems to me that so many of our problems were because she was given a bottle so early on. My mother used to be a nurse and told me that jaundiced babies that were going to be bf used to be given sugared water and this could be given from a cup. I mentioned this to the midwives at the time, who said they had never heard of such a thing. I am racked with sadness and guilt over the fact that I couldn't ebf DD1, especially as she has bad eczema. So my question is why do they have to give jaundiced babies bottles? I just don't understand :( I know they have to have extra fluids, but why from bottles?

Sorry for the long post, but I have found it very hard to get past this. :(

I haven't had any experience of jaundice, but I am familiar with the guilt that can come with successfully feeding a later baby.

I struggling badly feeding DD, had crash section with GA, milk very slow to come in then she was just a very miserable bugger high needs baby, we struggled til 13 weeks then she was FF after that.

DS - struggled with some early weight loss but then went on to feed til he self weaned at 25/26months. I really enjoyed how well the BF worked the second time but it made me feel more and more guilty about not feeding DD very well.

Daft really, I wouldn't think badly of someone else who had done the same - but we are much harder on ourselves IMHO. It was much my own fault though - was badly informed/had little support - I made sure I didn't make the same mistakes the next time...I did the best I could at the time

Sounds to me like DD1 got the benefits of some breastmilk for as long as you were able to feed her, and much longer than a lot of perfectly well babies get - you did a great job, and you have another great job still a work in progress

There are different levels and types of jaundice. Some of them more transient and less dangerous than others. Hydration is important to flush it out before it gets to a dangerous level. Hopefully since your first child was born the SCBU will have more available portable breast pumps so that mums can express by their babies cots. It must be draining to try and get a baby who has had a traumatic delivery to breast feed and then express and ensure it gets enough phototherapy for the jaundice level to come down. Cup feeding isnt generally encouraged on a SCBU but, they all have different policies and, at the end of the day, the babies health has to come first I imagine. I know its encouraged on post natal wards but, with sick babies it is different.

I hope that you dont beat yourself up over it and enjoy your two healthy children. Maybe you can try and talk to your health visitor or, try writing to the ward?

Waffle, I agree with every word you have just said!! Mums put so much pressure on themselves these days but, you have to keep an open mind. Sick babies are very different to normal term babies.

FredFred - could you send me a message and let me know which hospital it was? I am a midwife as you guessed and I know midwives from many different hospitals. If I know someone who works terhe I'd be interested to find out from them if this is really normal practice there. I'm quite shocked to be honest.

Sorry - just read that back. I didn't mean it to sound like I was disbelieving you at all. Just wondering if its one lazy/crap midwife rather than a terrible policy.

Wafflepuss I'm sorry if it came across that I was blaming the medical team. I do know they were helping DD1 to get better and I am extremely grateful to them for that. It was not their fault I had a pph and so my milk supply was low, but I did ask one midwife about what I had read about giving babies bottles and she did say there was no evidence that that is the case, I have since read otherwise. Maybe the reflux was not caused by the formula, or maybe it was, who knows- I am not a medical professional. All I know is that when she was bf she wasn't sick and when she was ff she was. I also know mixed feeding is possible, I did it for 5 months before my milk stopped. I'm sure there are others who can do it for even longer. I know and agree with you that BF is not the be all and end all, but it was important to me and one part of an extremely traumatic and horrid experience.

Are you sure it was a midwife that told you that there was no such thing as nipple confusion and not a nurse that was looking after the sick babies? Midwives are usually hot on breastfeeding.

I didn't have the experience of jaundice but I did have a bad PPH when DS was born and my milk took ages to come in and even longer for my supply to get established. My DS was mix fed from 2 weeks old because I just couldn't physically keep feeding him by myself as I was so unbelievably exhausted. In contrast, DD's delivery was very straightforward and I have been able to ebf her (now 7mo) without any problems at all. It's horrid, as I wanted to with DS and feel bad that he didn't get the same as her, but it is only after having a straightforward delivery that I have realised how ill I really was after DS was born and it's a wonder that he got any breastmilk from me at all really, and that is slowly starting to make me feel better. I did my best for him and we actually had to work so much harder for him to breastfeed than I did with DD so it is actually much more of an achievement in a way, even if he wasn't ebf and she was. And we didn't have the jaundice and lack of support in the hospital that you had to contend with either.

Please try not to beat yourself up about this, and if you can, try to recognise that despite absolutely crap circumstances you actually did brilliantly to breastfeed your DD1 as long as you did - in many ways it is more of an achievement than it has been to ebf your DD2 as that was so easy IYSWIM.

Viva the OP said that her baby had a dangerous level of jaundice, the staff cant pussyfoot around that.

What is a baby friendly hospital? Surely that should be standard??

Following an EMCS and post-birth infection I struggled to BF (well, latch seemed ok and didn't hurt one little bit) but my hospital gave DD bottles of formula because she lost a little more than 10% birth weight. We also had to stay in for a week because of the weight loss. Because DD was my first, I really didn't realise that I should have been worried about bottle (due to potential nipple confusion etc). Can't believe the hospital didn't adhere to NICE guidance and feed from a cup - at least try that before resorting to bottle if necessary.

Perhaps DD was seen as being in real danger, hence the decision to give bottle over cup? Background story: she was nearly 9lb but, as I say, lost just over 10% of birth weight in 3 days. It did seem bizarre to me that babies who were only 5lb were allowed home and we weren't, despite one of the paeds. on a different shift saying, if it were me, I'd allow you to go home because you would probably be more relaxed at home and would find this would help you with the BF. He also said I seemed sensible enough that, should I feel DD was struggling, I would come straight back to hospital so she could be checked over. Anyway, hee was right - as soon as we got home, the syringe/tube feeding was soon dispensed with (I just couldn't get to grips with it), although I did continue mixed feeding for a month or so, really gradually phasing it out. Then EBF for a few months and then supplementing with formula because I never really felt I produced enough milk for DD. But who knows??)

Anyway, I digress ... probably because, like the OP, I still feel, 2.5 years later, that I don't quite understand why certain advice was given and also whether I should have done things differently.

But nutshell is, the bottle didn't prevent DD from feeding from the breast. But I guess every baby is different ...

Well in 6 years I've never thought that I had to choose between a bottle and an NG tube. Cup feeds work just as well as a bottle.

I'd say that formula can increase a baby's appetite as a baby will take larger quantities from a bottle than when breastfeeding as they don't have to work as hard for the milk. Plus people naturally try and carry on till baby has had the whole bottle. So their stomaches get stretched and they get used to wanting more. Then you end up in a vicious circle of them being hungry and wanting more, so you give them another bottle, your supply decreases further, then they're even hungrier as your supply is worse so you increase the number of bottle feeds, repeat, etc and next thing you know your supply has stopped. Classic example in FredFreds case.

DC3 is an EBF baby with eczema and allergies here and what's worse, last persistent patch of ezcema cleared when I stopped breastfeeding despite having excluded dairy, wheat, sugar, nuts and seeds from my diet.

It's not always easy and it's not always your fault!! You love your babies and did as much as was humanly possible! It's sometimes hard to accept when in hindsight we should have done something differently but you have to forgive yourself. (I'm not a hapless parent and know alot about allergies and intolerences but despite knowing DS had a problem with wheat, dairy and sugar, I handed him a spoon of peanut butter when he was 10 months old! I am lucky the reaction was not more serious! [shame] It's hard to live with!!)

BTW - you could try posting in Allerigies about her ezcema though not all ezcema is food related.

No, I'm not sure Kittya I guess I just assumed. She had a uniform and was on the ward a lot. I didn't use the word nipple confusion. I just said that I thought that bottle feeding could make bf difficult. Maybe she didn't get what I meant. I was absolutely exhausted around this time and didn't have the energy to question her any further.

Tortilla, your post has made me feel better too, thank you!

hello fredfred I am so sorry for what you have gone through

when I had dd nearly 6 years ago I had a difficult experience in hospital too
the labour was long and fairly traumatic for her, she was jaundiced and we stayed in hospital mainly because they thought she might have inhaled meconium, this turned out not to be the case but because she was born late on a thur we had to stay over on account of weekend and lab results

she was on SCBU and bf to start with was quite hard as nothing much was coming I brought her to my room after the first night and would take her over for treatment.

the midwifes/ nurses kept telling me to give her formula which I did not want to do, I asked for a pump to see if I could make it going but they said no, my dh was there and was supporting me

on the second night sometime during the night the came to me and told me that if I did not give her formula she would die, it upset me greatly and reluctantly I agreed, dh got me a pump and I started trying to express with limited success but kept giving her what I could and kept trying to get her to latch

I can't say they were supportive or remotely helpful, at one point I lost it and screamed at them that I wanted to go home with the baby, awas told I could not until she was feeding one way or another, eventually I did leave on the Monday

That was the last time she had formula although I bought some just in case, it was a long hard road and it took over a month to feel confident and have it established, there were many dark moments and many tears but in the end we made it, mostly I think from the support of my dh and family and also from MN

I know it is hard but at some point you have to let it go, you did what you could and now you have 2 healthy children and really what happened had more to do with the failings of others
maybe you can channel some energy in supporting and advocating for other mothers in a similar situation

Kittya - I know about dangerous levels of jaundice and wasn't suggesting for one minute that they pussyfoot around. But in 6 years of caring for transitional care babies many with dangerous levels of jaundice I have never had to give one a bottle. They can take their feed requirements from a cup just as easily as they can from a bottle.

cup feeds do not work with sick jaundice babies who need phototherapy and enough fluids to flush it out. Do you know how sleepy a severely jaundiced baby is?

Im sorry the OP had such a bad experience but, I dont know what could have been done differently, appart from having mobile expressing machisnes which Im sure all SCBU's have these days.

Please OP stop beating yourself up over it. You did really well to express as much as you did.

Incubators dont suggest a transitional ward, more a unit for sick babies.

Cup feeds do work with babies on phototherapy as these are the babies I work with. I do know how sleeply severely jaundiced babies are thanks.

OP has said that baby was on same ward as her, not SCBU.

And when OP has said incubator I think she probably means a cot with a phototherapy unit.

Kitta, my DS was premature and jaundice and the BF + cup feed worked. But I was told that in BF babies it would take longer for the jaundice to disappear and it that was true... around 8 weeks he was still yellow and we had to check his blood levels often. but around 12 weeks he had a "normal colour

well, thats a first for me. Incubators on a post natal ward and they couldnt even give her proper breast feeding advice!!

Different policies for different hospitals. Im off to make some phone calls too now to my friends in different hospitals to find out their policies re cup feeding!! that can be my next project.

Sorry to be clear DD1 was not on SCBU. She was put in a heated room on her own and I was moved to a bed on a ward which had a window in the cubicle that I could see her through. Maybe I used the wrong word when I said incubator- sorry if I did. It was a completely enclosed heated box with UV lights shining on her above and below and she had a UV pad that we had to hold against her skin whenever I took her out to be fed.

I really doubt baby was in an incubator - why would you need an incubator for jaundice? Hardly like they'd need CPAP or intubation.

Think OP probably means a phototherapy cot.

thats a completely different scenerio then, if the baby was on the post natal ward. Sorry if I sounded arsey I just get so upset when I hear that mums have an awful time, we do our best to be baby friendly!