Donor breastmilk - any experiences - any interest?

[organiccarrotcake]

Hi all,

I'm working with UKAMB, the UK Association of Milk Banks, to try to raise awareness of donor milk banking, in order to drive the demand for donor milk.

To do this we need parents to be aware of the fact that donor milk is available in some hospitals, and to ask for it - and if there's no milk bank in their hospital and the mother is struggling to establish breastfeeding, to request donor milk as a stop-gap.

The benefits to a prem baby of breastmilk are very significant, but of course establishing breastfeeding is tough at the best of times, and can be so much worse when a baby is premature and/or ill. As well as offering some protection against NEC, babies fed breastmilk are often able to tolerate stomach feeds much sooner than those fed formula, thus removing the IV line and therefore a potential route for infection. Being able to give your baby donor milk takes some of the stress off you if you're struggling with breastfeeding or expressing, and that itself can often mean that it suddenly starts to work!

I would be really interested to hear from anyone who is interested in this - finding out more about donor milk - interested in supporting milk banking - maybe wishing to be a donor, or fundraiser, or maybe you can just spread the word. Fundraising for UKAMB is something I'm working hard on as they are a tiny, tiny charity running on a shoestring, yet without UKAMB there would be no milk banks at all. In order for more to be set up, for safe working practises to continue, and research to be undertaken, UKAMB needs more members and more funds.

If anyone is interested in finding out more, please reply, or PM me, or visit the UKAMB website or Facebook page.

Thanks for reading :)

www.ukamb.org/

www.facebook.com/pages/UKAMB/175639355822576

When my little one was in NICU I was expressing over 2ltrs a day, he was having 200mls a day. My excess went to Addenbrooks and just this week a lady came to collect my milk from my freezer as she could no longer breast feed her baby due to ill health. Having seen babys that needed donated breast milk i can say i am glad i was able to help even if only in a small way

Hello, I'm due to give birth to my first on the 20th - and I'm planning on breastfeeding, and expressing for my own baby - but if things go well i'd love to be able to express enough to donate to my nearest hospital with a milk bank (which I think is the John Radclife in Oxford). Are there other organisations which collect milk?

I do wonder about how soon I would be able to donate, and what happens if your supply changes etc. Because, of course, my baby would always have priority over the milk bank - do you have to meet a certain quota?

amanda that's amazing :) You may well have saved the lives of other babies with your donated milk :)

motherpanda congratulations on your pregnancy :) Once things have settled down for you after the birth and you're ready to start expressing (best waiting 4-5 weeks really) then the John Radcliffe would love your milk. Here are the key points:

• you need to have not had a blood transfusion
• you need to be on no medication
• you need to be willing to take a blood test for HIV, syphillis, HTLV and Hepatitis.

There are other requirements but those are the key ones.

Don't worry about having enough milk for your own baby. Your milk supply adjusts and makes what you need provided breastfeeding goes well for you (which it will with the right support).

There's no minimum amount as such, although some people set themselves a target and get themselves sponsored for it which is a great incentive! The milk bank charity on Just Giving is here:

www.justgiving.com/ukamb

Their website is here: www.ukamb.org/

I am delighted to answer any milk donation questions, both for donors and for parents who may be considering accepting or requesting donor milk for their baby.

Regarding other organisations which collect milk: Milk banks as listed on the UKAMB website are the only organisations for getting screened milk to babies who desperately need it. There are other non-hospital based organisations which are there to support informal milk sharing, which is a different thing. Informal milk sharing is where a mum who is struggling to feed her baby (for whatever reason) and still wants breastmilk asks for mums to donate directly to her rather than being prescribed by the hospital.

Can you tell me about the effect of the pasteurisation process of breastmilk on the immune components of breasmilk? Its something i read about briefly and have been meaning to read more research on -maybe you could point me in the right direction!

Hi DdJames

This may be of interest: www.walc.net/wp-content/uploads/2011/01/benefits-of-donor-milk-Bertino-09.pdf

It's not a new review and there's been other studies since showing the benefits of Donor BM/Mother's BM but it specifically covers your question.

Pasteurisation does remove some of DBM's immunological properties and this is one reason why it is second to MBM. Furthermore, a mother who is with her child will be passing on immunity via her own milk to infections that they are both exposed to, whereas with DBM this isn't possible (as the donor isn't with the child).

However, despite this, there are still many very significant health benefits to the premature baby who is given DBM rather than formula, including some immunological ones (with its probiotic effect, and protective effect on the gut). It also has a secondary effect: because prems fed DBM or (always preferably) MBM are able to come of IV feeding and onto direct feeding more quickly (because BM in whatever form is tolerated on average 6 days sooner than formula) that's less time for the IV to be in - thus you are more quickly removing a potential site for infection. Again, this isn't what you asked but it's an important thing to know and it is relevant to the immune system, even if it's a secondary effect.

Thanks for that organic - I will have a read later. I'm in no doubt that DBM is significantly better than formula for premature babies but I know that this has been an issue concerning some parents, I want to have the knowledge to answer their queries appropriately.

Thanks DdJames

Are you in a position to be talking to parents about this then? We (UKAMB) really need advocates promoting the benefits of BM, and if necessary DM, to prems because although many hospitals are very good, many still aren't. And even those who are good at supporting mothers to breastfeed or express, when this isn't working so well they still won't use donor milk as they don't know about it, or the managers won't approve its purchase.

I was supposed to have my DS at a hospital with a milk bank (King's) but was transferred to one without because SCBU was too busy and we were relatively low risk.

So although I expressed from day one it took a while for my milk to come in, (35 weeks, no labour - had to come out because of pre eclampsia/IUGR) and he did have to have some formula for the first week and a bit.

When DS was 6 months-ish I thought about donating and rang up but unfortunately you can't donate after your baby is 6m.

Can SCBU nurses give UKAMB info leaflets to all SCBU expressing mums? They didn't where I was, and I'd imagine that's where you'd find lots of willing donors.

bear some milk banks accept milk from mums whose babies are between 6 and 12 months. It depends on the individual milk bank and the types of problems that their babies have as some are fine on the slightly more mature milk, whereas others need the milk for younger bubs. Thank you so much for considering donating. Maybe you would become a UKAMB member? :)

www.ukamb.org/forms/Membership_application_10.pdf

Your idea is excellent, about the leaflets. I will persue this further. UKAMB has no "control" over what hospitals can give out, but certainly if the hospital and nurses were willing that would be brilliant.

At the moment we need to raise awareness of milk banking and encourage parents to request donor milk if they need it.

I had a very poor experience of my local milk bank I must admit. My son was in NICU after being born at 26 weeks and I was lucky enough to have a massive oversupply of milk, to the extent that I filled the local milk bank to capacity. But I felt almost like this was a nuisance to them as much as anything - a sort of 'oh god, you with yet more milk again' attitude. Their only suggestion once they were unable to accept my milk was that I should pour it down the sink! Off my own bat I contacted another hospital two hours away who turned out to be so desperate for milk that they came to collect my excess by courier. Why on earth did my local hospital not even suggest this as a possibility?

My local milk bank never got back in touch (as they'd promised) to tell me that they had space in their freezers again, with the result that it was easier in the end to stop donating altogether. I realise they are under huge resource pressure, but I had to do every single inch of the running, at a time when I was under the most enormous stress with my son critically ill - some of the time at another hospital a hour away, having been booted out unceremoniously due to lack of NICU cots. I'd have to come in in the evening (after a day in the other hospital NICU) carrying kilos of milk down long hospital corridors, and then scrabble around NICU for bottles and labels, and for someone to be available to actually take the milk from me at all. Later, one of the neonatal community nurses even tried to reclaim some of 'their' hospital milk bottles that I had leftover because she wasn't happy that I was using them to donate to another hospital! I wasn't expecting a red carpet, but even a small attempt to make their donors feel valued would have made a huge difference. The other hospital sent a little card thanking me. I'd have gone to the ends of the earth for them. The local milk bank? They just squandered all my considerable good will.

libelulle what an awful experience :( and

I would really appreciate it if you would PM me with the milk bank that you had the problems with? I really don't want other mums to go through that.

You are right, they are often under terrible pressure, but that's no excuse for this.

How is your son now?

Organic - Yes I work as a Nursery nurse in a Level 2 unit. The only time I have seen DBM used in my unit is for a baby that was transferred to us with a supply from a larger unit that had their own milk bank. Would a unit without it's own milk bank need to purchase DBM from a bank?

Yes, that's right. There's a UKAMB Facebook group which is a great place to get fast answers about DBM.:

www.facebook.com/pages/UKAMB/175639355822576

I think this is a great thing to do. :)
though i have been told ... people cant accept money for breastmilk yet i have heard that private companies linked to hospitals SELL breast milk and its not cheap. it was a while ago and things could be different now.

An excellent point, kay.

Firstly, this doesn't happen here in the UK but the full explanation needs to come from someone else. I do know the details but it's a bit complex and I don't want to get it wrong. Bear with me and I will ask someone else from UKAMB to give a proper explanation.

In the UK, milk banks usually make a charge if they are supplying donor milk to other hospitals. The fee is to cover some of their costs which are fairly hefty when you consider the staffing costs, all the donor screening costs, microbiology tests to ensure the milk is safe for very premature and ill babies etc. Milk banks don't sell breastmilk directly to parents. In the States there is a for profit company that sells breastmilk and breastmilk products such as human milk fortifier to hospitals as part of a venture capital funded business. Hospitals are given financial incentives to put potential donors in contact with them..... I don't think this would happen in the UK. There are also internet based businesses in the States whereby women can be put in touch with prospective customers for their mik and it is openly sold. It does sometimes happen here too but not very often.

Thanks. My guess is that kay has heard of the human milk fortifier company that you and I were talking about recently, everydrop, which of course is US-only and nothing to do with UKAMB. UKAMB is strongly against the buying of breastmilk. Intra-hospital selling is quite different, because if a hospital wants DBM and doesn't have a milk bank it needs to pay a milk bank for processing the milk, and a contribution towards running the bank, but that's just NHS book balancing.

Thanks for clearing that up, as that did put a downer on the whole thing, to give something like that thinking you were helping to be sold on. :)

Very important one to raise, kay :)

My son was born at 26w and I was producing about 2 litres a day. At first he was taking 0.5ml every 4 hours! So the freezer in NICU was full to bursting by the time he came home. Unfortunately as I am on medication for high blood pressure it all had to be thrown away. There was a mother whose baby was in the cot next door to my son who was on exactly the same medication as me who couldn't produce enough, and I wasn't even able to donate it to her.
It did make me sad actually. The medication was perfectly safe (my son was drinking the milk after all!) and I had to chuck gallons upon gallons away.

That's such a shame penguin, and so frustrating :(

Not sure if you're still checking this, but I've been having a mare trying to donate breast milk. I would have loved to have had some for DD when she arrived at 27 weeks, as it took a while before I could provide enough for her, but my neonatal nursery while amazing for premmies was not good for BFing and I didn't know I could even request donated milk. Infact they told us they didn't use it because it was so costly at £180 a litre. Is that right? Then when my supply did kick in and I was pumping about 1200ml a day my unit regarded me as a pain for filling up their freezer, infact I've been told by the very sniffy charge nurse that if it's not all gone by this Friday it's in the bin, even though we've only been home less than 2 weeks, as they need the space for the other women on the unit - despite the fact that in the 9 weeks we were there I never saw more than a dozen 100ml bottles in the darn thing. So I'm at home with a weeny teeny premmie feeding every two hours and a lively two year old and I'm having to contact a host of milk banks off my own back because my nearest one told me great, they'd get back to me after a holiday - then got back to me to tell me no thanks, unless I could find time to drive it across the country to them their supplies were fine and they weren't going to justify the cost of a courier. Basically they wasted a week of my time. So now I'm going to be getting it couriered to Northern Ireland - who just put out an appeal because stocks are so short. It's so annoying that the other bank couldn't have done this? Surely the milk banks should be working together, so mums in my situation aren't having to move heaven and earth to liaise between them. If it hadn't been for me searching google for someone who might want the milk, I wouldn't have even known. And it doesn't seem right that I'm going to frankly spend a fortune, just to donate milk, which will then be sent out at a considerable price, especially as my own daughter was never able to benefit from donated milk when she most needed it. NI are being very helpful but until then it felt like my trying to breast feed my 27 week premmie was more a source of irritation for people than anything useful or valued. Sorry for the whinge but I've been left pretty underwhelmed.

libelulle and poppet45

as a mum to twins born at 26 weeks i personally would like to thank ladies like you who take the time and effort to donate milk. I think it is awful that you have had to fight to do it. I wasnt able to keep up with the boys milk demands, small though they were and was offered donor milk. I am eternally grateful for my boys being given that chance. Maybe that is why they are now completely manic 4 1/2 year old boys!

Donna