to wonder why my breast milk is good enough for my baby but not for anyone else's?

[entropygirl]

I wanted to donate breast milk but found out I would be disqualified due to having a blood transfusion after labour. Noone ever suggested to me that I should not breast feed because of the transfusion, so it seems my milk is safe for my baby but not safe for anyone else's baby. This seems outrageous to me! If breast milk is such an asset, particularly for prem babies, then why disqualify people based on the stupidly tiny chance of blood transfusion generated vCJD when there is not even any evidence the disease can be transmitted through milk?

Yes, lola, I think you've summarised things nicely.

I would pick formula everytime, entropygirl, sorry. I might choose to pass on the risk to my child with my own milk, but not from another person's milk.

There needs to be better communication, obviously, the information is just not there. I also think that the hospital could have done a better job in making you feel better about not being able to donate your milk.

barlett can you confirm whether it is NHS policy not to tell mothers who have had blood transfusions about the risk of vCJD in breast milk, as the NHS wants them to BF, please.

And what about the scenario I posted above?

None of this makes sense to me.

"I might choose to pass on the risk to my child with my own milk"

But the point is that people are not making this choice as they are not being told about the risk.

Further, Bartlet indicates that this may be NHS policy (not to tell women who have had transfusions as they want them to BF).

I think that women who have had transfusions should be told about the risk so that they can make an informed decision.

It's a funny old thing isn't it. The more I think about it the more I am.

Does anyone know if women who have had blood transfusions are prevented from pumping for their own premature babies?

Also can anyone confirm whether premature babies are more at risk of vCJD from milk than term babies? Someone upthread said not a lot was known about it.

SardineQueen - I am sorry that I seem to have worried you! Really the risks are very very small for anyone. It is just the lack of consistency that annoys me. I do feel I should have had it pointed out to me that the transfusion not only affected my risk of disease but also my babies but in the end they may just expect you to do the maths yourself. I would have discarded this risk as non-existently small and carried on BF. I therefore believe that mums of prem babies might want to do the same but do not have the chance to give their babies breast milk because the establishment has made a blanket rule.

No you haven't worried me.

You have started a thread that have raised some very interesting issues, which so far no-one seems to have a definitive answer about.

I hate things being illogical, and this policy seems illogical.

I also hate women not being given the information they need to make informed decisions about themselves and their families, and this is another problem here.

I expressed milk for my twins while they were in hospital for a few months, and they were incredibly premature. No one ever told me there was any risk to my babies due to having had a blood transfusion, but believe the benefits of any breast milk vastly outweigh the risks of any formula to such frail babies.

I actually had to throw lots of milk away as I had no where to store it, while other babies in NICU had to be given formula as they weren't sick enough for donor milk. IMO my milk would have been much better for them.

Yes, I hate the lack of logic too. I'm glad to have provoked at least a little discussion - it was my first ever post on a forum and I was a little dismayed that the first comment was '' but things have improved from there and some really valid points have come out both for and against too!

Presumably a mother who's had a historic blood transfusion would probably have passed on vCJD during pg anyway - the only time where this becomes relevant is if she has a transfusion for post parton haemorrhage.

The numbers for vCJD are currently tiny, and decreasing rather than increasing, but as I understand it only one genetic group of people have so far been affected. There are two possible explanations for this - the good one is that only that group were vulnerable - the bad one is that that group displays symptoms much quicker, so other groups will get it, but not for several years. Even so, the numbers are expected to be relatively small.

Sardine, it is not NHS policy not to tell women about the risks of a blood transfusion. Everyone receiving one should be told about the risks and about how tiny they are.

I would have no qualms whatsoever about BFing myself after a blood transfusion or advising other women to do the same. That is not the same as hiding information!

That's a good point dilys does anyone know if vCJD is passed to the baby in pregnancy?

Bartlett the OP was not told about the possibility of passing vCJD to her baby through her breast milk though.

Nor was Queenof and she has BF 3 babies.

From here

"There is no evidence that CJD is spread between household members eg by coughing or sneezing, direct skin contact or sexual contact, nor is there evidence of transmission during pregnancy/birth from mother to baby."

Although of course it not having happened doesn't mean it can't.

With HIV I know that not all babies are infected while they are carried / born, some are not infected until they are fed with BM from the infected mother. Could vCJD be the same?

I won't & can't take responsibility for what does or doesn't happen in the NHS!

I'm not asking you to Batlet

You spoke with authority about the situation with blood transfusions, infections and milk, and also about what happens in the UK with HIV and vCJD contrasting with what happens in areas without access to clean water surrounding HIV.

So I thought you might know the answers to some of these questions, that's all.

Unfortunately there are a lot of unknowns when it comes to nvCJD. What is surprising & reassuring though is that given the extent of probable exposure, there have been far, far fewer cases than were expected.

Yes that's all well and good but it doesn't explain why women who have had blood transfusions are not being given information about this risk in order to make an informed choice about whether to BF their babies.

As others have said, either it's a risk or it isn't. And if it is a risk then that should be explained to women.

Sorry I can't answer the questions properly, Sardine. So many of these risks are unknown & unquantifiable.

I am not disagreeing with you! I agree that women should be advised of these, albeit tiny, risks and gave what my advice would be above!

YABU imo. Your child has the choice of receiving your bm or formula. The benefits of bm will outweigh the miniscule risk of your milk being contaminated.
It is, however, preferable for a baby receiving donated milk to receive it from a donor who hasn't had a transfusion and so long as they have enough of those donating then I don't think they should be obliged to take the, however small, risk of accepting milk from people who have had transfusions.

Wouldn't the baby of a vCJD carrier already be exposed in utero, so most the risk is by having the baby at all, breastmilk is only a small extra, hence no point in explaining extra risk if breastfeeding or not? And I think most women are advised upon any blood transfusion that you could pick up unknown bug from it? So it's kind of covered? (Sorry if that was repeated in thread already, didn't seem to be?!)

Yes I would pick formula over milk that had an unknown risk of vCJD (or hepatitis, etc.)

Prem babies only get the tiniest amount of breastmilk that you could imagine, btw. Not because of shortage of donors, either, from what I can work out. I think premies get most of their nutrients intraVenously, but for some reason a bit of oral real human milk helps them thrive & it only needs to be a tiny bit. Ideally from the child's own mother, but from donors otherwise when available; lots of prem units weren't giving any milk when I last knew much about it. Just because the banks were too far away, from what I can figure out.

Speaking as an ex-milk donor (twice) who enjoyed touring the Rosie in Cambs.

As far as I can see the OP has a very good point. I understand the reasons for her milk being rejected by the milk bank, however small the risk it is still a risk, and they are just covering themselves. I imagine the rule is more about protecting themselves from lawsuits than protecting babies, but surely therefore there is also a tiny risk to the OP's baby, and should she not have been warned about this, and then allowed to make an informed choice, just the same as with smoking or unpasturised cheese in PG, etc?

oops, X post with Sardine re transmission in pregnancy. But vCJD we still know so little about, and is so infrequent, & so long to develop, I don't think the lack of risk in pg is truly proven (yet).

Not flouncing but need to go & get ready for friends coming round. Sorry!