Ongoing support for breastfeeding - how?

[elkiedee]

My first baby was 15 weeks old yesterday, and I'm still feeling terribly down over failing to breastfeed him. I'm posting some of my story here as I'm looking for some way forward in getting past the whole experience.

A week after his birth, Danny was found to have lost quite a lot of his birth weight, and the community midwife referred us back to the paediatrics ward of the hospital, where we were admitted. He was diagnosed as having jaundice and quite serious dehydration.

I had been breastfeeding but had found it very difficult to get him latched on and didn't succeed in doing it consistently. He had also started getting very sleepy about 5 days after birth. I had tried phoning a number for a breastfeeding counsellor, but didn't really understand what was going wrong or how to access the right support at the right time.

We were readmitted on a Friday to the paediatrics ward, and Danny was successfully treated for dehydration and jaundice over the next few days, but we were kept in until the following Saturday.

No one was really able to work with me on how to maintain/establish breastfeeding properly so that D could get enough to eat without having to be topped up. While I was able to stay with him, given food and lent a hospital pump to express, and prescribed something to improve my milk supply, paediatrics doesn't actually have staff trained to support breastfeeding directly. And there was no assessment, for example, of whether my milk supply was in fact low - I don't think it was - I can remember it coming in and leaking etc.

Being in hospital made it hard to establish a routine, as I was often waiting to see the consultant or another professional. The breast pump wasn't always available at times when I needed to be able to use it as it was being shared with others, making it very hard to fit in pumping at least 3 or 4 times a day, for 20 minutes each side each time. And when I noticed that I was losing a lot of the milk that came out and not collecting it, no one at the hospital was able to help me, only my partner.

The result of all this was that when we finally got out after 8 days - and that required quite a fight to be allowed out - Danny was being mostly formula fed with a little expressed breastmilk. I continued trying to express up until a week ago, but with limited and diminishing success.

On one level I believe that my son is healthy, thriving, etc. Professionals who come into contact with him are happy with his weight gain, he's growing huge and seems to be a happy, responsive baby, as far as what anyone tells me and I can see for myself. But I hate the fact that I couldn't breastfeed him, that I'm having to feed him on formula, and I'm lacking in confidence. I'm fighting with depression.

I met a woman more recently who had a very similar experience to mine, giving birth at the same hospital, being readmitted to the same paediatrics ward, and giving up bf at 3 weeks, and being unhappy about it.

On one level, the hospital could be seen to be supporting breastfeeding and putting lots of resources into it - accommodation and food for me to stay with my sick baby, medication etc - it must have cost an enormous amount. But... no breastfeeding counsellors or midwives or other staff with specific training in supporting breastfeeding women. Not on that ward.

And at the beginning, I was on a postnatal ward with 2 midwives caring for 18 women - even those who had extensive experience and knowledge of bf support (clearly this varied) couldn't really give that support as well as everything else that women on the ward might need. Some women and babies wouldn't have been very well and midwives would have had other priorities.

I'm going to stop here for now and post this, would be interested in responses (please don't tell me dreadful things about how terrible formula is for babies etc, I feel really crap about it already).

Elkie, you did really well under the circumstances and your ds did get breastmilk although not as much as you would have liked. It sounds to me as if they had sorted your latch out in the hospital in the first place that there would have been no need for you to have gone back in. IMO there should be a properly trained lactation consultant available to all women immediately from birth. This would save a whole lot of bother later on.
Have been in hospital with a prem baby and although I had my own pump, didn't have anywhere to use it! There was one tiny room with an electric pump in it but there was always a queue. The hospital I was in would have needed IMO at least 2 more similar rooms. And formula is not terrible! Sometimes it is needed and it keeps babies alive and well. You sound like a fab mum!

elkie, thanks for sharing your story. Although I knew bits of it I wasn't aware of the full details. It sounds as though you got lots of equipment but very little direct support that could have made all the difference. It also made me really to hear you say you were leaking milk and unable to collect it - as you say, surely your milk wasn't actually low at all!
I can understand why you are frustrated as with a bit more support you probably would have been breastfeeding fine. Have you and your friend contacted the hospital with your comments?
It sounds as though you did everything you possibly could have done in an impossible situation, which I know is probably no comfort! It's worrying that you're talking about depression, and that you're worried Danny isn't thriving, even though he obviously is. As far as I know (please someone with more knowledge correct me if I'm wrong!) bf babies don't have a better general health level than ff babies, they are just less likely to get certain conditions. They don't wake up in the morning feeling healthier iyswim Does your DH know how bad you are feeling?
Well sorry for that long ramble, but I do tend to go on a bit.

elkie, i can only imagine how distraught you are feeling over these issues.

first of all, the hospital failed you and your baby. you have not failed.

I don't know enough about these things from what you say and what i know, i think they have failed you on many levels.

First of all, it sounds like he was not latching on well so he was not transferrring milk effectively when you were released. The midwives in hospital should have spotted this and fixed it before you were released.

The problem was compounded by not getting proper support on readmittance. IE a bonafide lactation consultant and exclusive use of a pump in the interim. Not food, a bed and a lot of people flapping about with insufficient knowledge on bf.

Your story speaks volumes about how these 'streamlining' of the NHS has hit those least able to protest the hardest.

Your case is an example of how a little bit of money, (say £21,000 X 2) of hiring two bfc would have save many thousands.

For many reasons I think you should get in touch with your local NCT. I know that their Post Natal leader in my area (but it may be a different person in other areas) can review your and your baby's hospital notes, counsell you, can help you write a complaint letter and even attend a complain hearing with your hospital.

Please don't despair. There are lots of people here on MN to listen and help you work these things out.

Hi Elkie, Like Katy I had no idea of the extent of the troubles you went through and I am really sorry that despite your best efforts and wishes, you haven´t been able to breastfeed. I agree that it might be helpful to write a letter to the hospital about your experience?

I wish I could offer more advice but I´m totally clueless, I hope soon you´ll get a lot more people on here that can share their experiences and how they managed to overcome the bad feelings. You are a fabulous mum Elkie and Danny is a very wanted, very loved baby, you are already giving him an amazing start in life. You have done your best, everything you could, and that´s all we´ll ever be able to do! Fight the feelings of guilt babe, even though it seems to be part of being a mum, don´t let them become bigger than all the wonderful positive things you give to your beautiful boy all day every day

elkie

This is such a sad situation, and you have struggled with an impossible challenge....firstly, good help and support in the first days stops babies becoming dehydrated and the fact you ended up in hospital is really an indictment of the that lack of support. Midwives should have checked your baby was feeding effectively and asked you about his poos and wees - I would bet, for instance, that he was not producing lots of soft yellow poo by day 4-5.

Then the stay in hospital - oh dear.....lots of lip service, nothing really one to one and intensive You needed to be expressing at least 6-8 times iin 24 hours, not 3-4, and it is hopeless to have a pump shared with others. You needed your own.

You can call the NCT bf line 0870 444 8708 and speak to a bf counsellor about your feelings now, which some people do. We are trained to listen and offer support to anyone in your situation, not just people who are currently bf.

Have you thought about writing a letter - you could use your post here as the basis of it - to the director of midwifery, the paed you were in touch with, the chief exec of the PCT and anyone in your area who has a special responsibility for infant feeding. Don't hold back. Say clearly how sad you are about it, and ask them how they can be sure none of this is going to happen to anyone else.

elkie. you post mademe sad and angry in equal measure so i cannot guage what all you feel abou this. i am no expert but think iti s awful how you were treated.

i know you put in your absolute best to maintain bf and through poor support and advice - it did not happen the way you wanted it to. you have always been so positive and supportive to other people on our thread - that it must have been so difficult not to get the support you needed at that time from specialists. you kept going with expressing for alot longer than many others woudl have and credit to you for that.

i really hope you are able to get some closing on this. you are a great mum, you speak so lovingly about danny and are making his life full of plenty of expereinces. i know you find it hard to be cooped up and have been out and about alot. for what its worth - i do think feeding is only one part of being a mum and whilst you may not have been able to continue bf - you are doign everything else spot on. he is beaut - his pics are great.

take it easy on yrself and maybe as others say - following this appalling service / treatment up may give you some control back.

xoxoxoxoxox

Thanks for feedback. I've thought and thought about how to take this up with the hospital etc and I'm still not sure. As I work in a public sector legal department, I have some idea of what complaints processes can be like, and I don't want to claim further NHS resources in defending against a complaint from me, I want to channel my sadness and anger into doing something positive. I would like to find out if there are concrete ways of finding a voice for women over how our maternity services locally are organised - I know the Whittington has a Patients Forum for example, and that the NCT is a campaigning organisation (however, I don't know if the NCT locally is able to sustain that area of work) - I'm intending to try and find out more. Of course, to do that I have to stop just sitting here moping.

elkie, no need to make a formal complaint if you prefer not to. Just let them know, ask if the director of midwifery could spare time to meet you and tell you if other women can avoid the experience you had, and get in touch with your Maternity Services Liaison Committee - everywhere has one, though they are a bit 'toothless'. Find out who the chair is, and ask them to agenda consistent bf support. Your local NCT is likely to be in touch with the MSLC.

Thanks tiktok, that's useful information. Are MSLCs organised by area or hospital?

Don't beat yourself up about it. You've done the best you can in very difficult circs.

The stress on bfing in the nhs is all well and good but due to resourcing issues they really don't back it up. I was desperate to feed and only sheer bloodymindedness kept me going through mastitis, bleeding nipples and awful pain. I eventually cracked the latch after about 2 weeks on one side but it was 3 months before I could feed without pain on the left. None of the midwives I saw gave the same information, some of it conflicted. Even the bfing nurse I saw wasn't helpful. It was only a great HV I saw who helped me tbh. Her and lots of telephone support from NCT and LLL.

There should be a full visit to each new mum by a bfing specialist imho. I know in Lancashire there is a group who got funding from somewhere and work in partnership with nhs to provide support visits to all new mums after the birth to advise and support. This should happen everywhere in my view.

Elkie, each PCT has an MSLC. A call to the PCT will give you the info of how to contact the chair.

Elkie, am glad you shared your story and hope by writing it down it has helped (I often find writing something down that's bugging me helps).

Why are we so hard on ourselves about feeding? My sister shared her story with me after I had L and it's not dissimilar to yours - her wee man lost a lot of weight, couldn't latch on, they weren't allowed home, she didn't get enough support and she switched to ff. I had always assumed that she was happy with this decision but 7 years of sadness came out when we talked about it.

I hope your feelings of sadness and disappointment diminish as you enjoy your wee boy - he's so lovely and you obviously love him to bits - what a lucky boy to have you as his Mummy! As others have said, you did your very best and were let down - I think your idea of doing something to help other women is a great one.

Elkie - You have been let down by the system as so many women are. I felt very guilty and upset when I didn't manage to breast feed my ds and I struggled like you to deal with it. The key things you need to remember is that you have not failed, you were let down by those who should be able to support you. I know that the midwives in my area have had no breast feeding training for 10 years because they admitted it to me. They looked almost petrified when I was having problems feeding my ds as they just don't have a clue where to start.
The key thing you need to remember is that breastfeeding is just one thing that a mother can do. There are so many other things you will do for your child as they grow up so please try not to dwell on this experience and look forward to the future.

I agree with all the previous posters. The hospital failed - you didn't fail.

Contacting those responsible for Maternity Services and postnatal support isn't the same as making a complaint, in fact it can be hugely helpful for them to know how current provision impacts on women. For all you know there may be a midwife at the hospital struggling to get funding and support for breastfeeding services and letters/input from you and people like you could be the difference between a project getting the go ahead or not.

If we don't give feedback on our experiences how can we expect anything to change? I think there is far too much emphasis on "persuading" women to bf as if it's our fault that the rates are so low. I'd like much more examination on how postnatal routine affects breastfeeding rates.

bookthief, I agree with every part of your post.

Women themselves have a responsibility to give feedback on their experiences - and healthcare professionals have responsibility to get away from persuading women to breastfeed, and instead, they should be working on supporting them through problems and challenges to make it work for them.

Every one who posts on Mumsnet about shit breastfeeding support should at least consider writing to their hospital/MSLC/PCT as well...they can even copy the same post, to minimise the effort!

I can really sympathise with you on the poor support in hospital especially the shared breast pump issue.
DD was in SCBU for a week and i expressed for her during that time but there were two pumps for the whole postnatal ward- there was always a queue. Plus as you say no privacy- staff often walked in on me despite drawn curtains up to and including the newspaper trolley man!
Advice was really conflicting some would say you should express in the night to get your supply going but then others clearly thought I was mad to do this and said why don't you just get some sleep and let us feed her.
When i got out instead of buying chocolates or a thank you card for the ward I really wanted to contribute to a fund to buy another pump but there didn't seem to be a way to do that.

mamdoc - and you've written to explain how useless a shared breastpump scheme is, and how the queues build up, haven't you?? Pumps cost about £1000 - peanuts in the context of a SCBU budget.

Well I hadn't done till now. Like elkie I was reticent about complaining as I work for the NHS- sort of misplaced loyalty but also know what she means about energies directed to fending off the complaint rather than solving the problem. BUT today I have sent an e-mail to the MSLC and posted on the comments section of their site. Was initially pleased to see they had a site with minutes of meetings but then those hadn't been updated since 2005 so I hope not a general reflection of the state of this committee.

Thanks for the responses and I'm glad that this thread has prompted someone else to start doing what I still need to - mamadoc contacting the MSLC.

I found a handout presumably given during the pregnancy from my hospital, which has a pro-breastfeeding policy but doesn't back it up, and found something which made me cross as this was part of what went wrong for me:

"Your baby will know when to feed - it is not necessary to develop a routine".

It obviously depends on what you mean by routine but I might not have failed if my baby and I had just known when to feed.

21% of the 76% of new mothers who started breastfeeding in 2000 gave up within just TWO WEEKS - 93% of them didn't want to, and that presumably includes many like me who never thought they wouldn't breastfeed.

There's nothing in that handout to warn those of us in that position that we might face difficulties. It says "it is important for your baby to be positioned and attached well in order to feed well" but doesn't say how you know and what you do if there's a problem.