Risk Assessment.

Since the arrival of online mother-to-mother breastmilk sharing resources such as HM4HB (Human Milk for Human Babies), Eats on Feets, and Milk Share, a debate has been taking place amongst some breastfeeding advocates about it's safety.  When the debate raises it's head on DBM I get very nervous....  Emotions run high and people are very passionate about this topic - this makes it something of a minefield. 

However, it's an important issue and one we need to address.  Whilst I personally believe mother to mother milk sharing to be a wonderful thing, I also think it's important that we're realistic about the possibility of risk it carries with it. 

Risk is part of life.  We can't escape it - we can only manage it.  We all make 'safety-related' decisions every day.  Those decisions affect the health of our children. We choose their car-seat and the car they will travel in, as well as who will drive them.  We decide how, when, and if we should medicate them when they're sick. We make decisions about vaccinations, vitamins, what kind of foods we give them to eat and what kind of drinks we give them to drink.  Some of us make decisions about who will look after our children for us.  We can only really ever guess (to some degree) how safe our decisions are. We make our decisions based on our knowledge, our experience, and often simply on our 'gut' feelings.

Formula feeding is high on the 'risk scale' - no doubt about it.  Human breastmilk from another mother is listed as preferable to formula milk (by a considerable margin) by the World Health Organisation.  However, many people still have concerns about sharing breast milk outside of a milk bank.

Some people worry that healthy donors should be donating to milk banks in order to support the weakest and sickest babies.  They are concerned that the milk banks will suffer.  I think this is a reasonable thing to be concerned about, although I think It's also important to recognise that not everyone can donate to a milk bank.  Many healthy women are unable to donate to milk banks.  Perhaps because (as was my personal experience) they take medication, and whilst it's perfectly safe for them to feed their own baby they are necessarily not eligible to donate to the milk bank.  Perhaps their breastmilk is considered too 'old' to be given to very young/ ill babies.  Most milk banks only accept donations from women beginning when their baby is under 6 months old as this milk is more suitable for premature babies.  Should healthy babies be denied the benefits of these mother's spare milk just because they're not suitable donors for the milk banks?

Everyone, it seems, has an opinion.  For some people, the assurance that a woman is breastfeeding her own baby is proof enough that her milk is 'safe' to be shared.  Others are only satisfied if  they know the donor and their lifestyle personally, and they're uncomfortable with the idea of contacting a 'stranger' online for the purposes of sharing milk.  Some women will happily nurse each other's babies, and some other mothers who are strong believers in breastfeeding find the same notion unsettling.  Some people would simply rather give their child formula milk than milk from another woman, whatever the medical assurrances.

I think I would fall into a different category again.  I've already given my daughter another woman's milk - and I didn't think twice about it.  I will be eternally grateful to the stranger who made it possible for my daughter to avoid having any more formula in hospital.  However - that woman had donated through the milk bank.  She'd been tested and vetted by them, and I had confidence that the milk was safe.  If it had been a stranger from a website I'm not sure I'd have been as confident. 

If I were in the position of needing to feed my child milk other than my own again I'm sure I would want them to have human milk.  Without a doubt.  Milk banks don't usually have a surfit of milk available to healthy babies though, and I'd still prefer my child to have human milk.  So that milk would necessarily have to come from a mother 'outside the system'.  Would I be happy to give milk from an unscreened mother, though?  I'm not so sure about that.  You see, I'm fairly sure I'd want to have the donor screened (unless the donor was a close friend or my sister - so that's where my 'lines' are!). 

When I've asked about how one goes about getting screening most people seem to say it's not really necessary.  If the potential donor has given birth in the UK then they will have already been screened for most things as part of their maternity care. 

That's a great baseline - but what if your donor has been breastfeeding her own infant for (example) a year?  It will therefore have been well over a year since her blood was screened.  I'd be lying if I said I wouldn't be wondering at the back of my mind if things MIGHT have changed for her during that time.  How do you - or she for that matter - know that (for example) her husband/ partner has been faithful to her during that time?  What about the other infections which weren't tested for in pregnancy? 

Despite all of our good intentions, things happen in life.  We encounter risk.  We encounter it every day of our lives.  All we can do is do our best to manage that risk.

As a mum, I would want to reduce all possible risk factors.  If I were lucky enough to have someone offer to express their breast milk for my child on a regular basis, I would - after biting their hand off - ask them to go through some screening.  And if the screening wasn't free, I would pay for it myself.  I am sure any potential donor wouldn't mind at all.  I should imagine I'm not the only mother who would feel this way.  

But the problem is, I don't think it's as easy as just popping into the doctors and asking nicely - perhaps it depends on your doctor, but for me I know it wouldn't be that easy ;)

Doctors should of course - by rights - be helping us all to make sure as many human babies as possible get human milk because it's best for their long term health and development.  But they're not.  Why they're not, is a whole other debate.

Recognising that the NHS is unlikely to prioritise screening for mother-to-mother milk sharing, I tried to find out a little bit about how one would go about getting the tests done privately.

First of all I called UKAMB for their advice about what blood screening their donors go through, and they were very helpful indeed.  They told me that they screen for HIV 1 and 2, Hepatitis B and C, HTLV l and ll and syphilis.  They also recommended I share with you all the most recent NICE guidelines for mothers who want to donate milk to a milk bank.  This leaflet covers some of the questions which should be asked of any mother wishing to donate her milk - whether to a milk bank or to another mum.

This link will take you to the page where the most recent NICE guidelines for the milk banks themselves are located.   UKAMB recommended to me today that any mother who engages in informal breastmilk sharing take steps to flash pasteurise their milk.  The milk banks use a system of heat-treating their stores which is not available to us mums - however flash pasteurising is a helpful safety measure to put in place.

The lady I spoke to at UKAMB said she recognised that their 'bar' concerning the safety of donor milk from the milk bank is set very high.  Hopefully most people will understand that sick babies need to have potential risks managed even more than healthy ones.  Even traces of medications in a mother's milk which are harmless to a healthy baby can be a potential threat to a sick one.  Because it's a charity, and funds are sadly limited, making their donor milk as acceptable as possible for the sickest babies is what UKAMB needs to focus it's resources on. 

I feel it's vital that we encourage any mother who is considering donating her milk to approach her local milk bank first.  You can locate your nearest one here.  If more mums donated to our milk banks, we could be sure that fewer of our sickest babies were being fed formula - and fewer of them would become ill and die of NEC.  As a mum whose child was given formula in SCBU and went on to (only) develop a dairy allergy this is something I feel strongly about. 

There is also important information on the NICE document about the best ways to collect and store breastmilk.  I know most people who would even be considering breastmilk sharing are already experts at all of this (by the way), but it's good to know where the information is in case you ever need it!  

So - if a mother wants to ensure her donor has gone through a similar 'vetting process' to the one used by the milk banks she would need to do the following:

• ensure that the donating mum is tested for - and clear of - HIV 1 and 2, Hepatitis B and C, HTLV l and ll and syphilis.  
• ensure that the donating mother does not currently smoke or use nicotine replacement therapy (NRT)
• ensure that the donating mother does not regularly exceed recommended alcohol levels for breastfeeding mothers (1 to 2 units, once or twice a week).
• ensure that the donating mother has not used, and is not currently using recreational drugs (the answers to these questions are, ultimately, a question of trust for us AND the milk banks).
• ensure that the donating mother is not at an increased risk of Creutzfeldt–Jakob disease (CJD) (see www.hpa.org.uk for information on the risk of CJD).

You can check the safety (during breastfeeding) of any medications by calling the Breastfeeding Network's 'Drugs in Breastmilk' helpline on 0844 412 4665. 

It's important to recognise that just because someone can't donate to the milk bank, it doesn't mean they can't share milk.  Many medications are completely safe to use whilst breastfeeding a healthy baby, just not an ill or pre-term one.  Mothers who donate to the milk banks are sometimes asked to discontinue their donations for a time whilst taking some medications.  They are usually still able to feed their own babies.

Despite donor screening being discussed as a consideration, I found it hard to locate information online about how to go about getting screening done and how much it costs.  Assuming the donor's NHS doctor won't do the blood tests (and we all know how hard it can be these days to get a GP to do any non-essential investigations) where else can you go?

Since DBM is based in the UK, I contacted the UK's largest provider of private healthcare - BUPA to ask about screening.  They were about as much use as a chocolate teapot...  Although they have many and varied 'screening packages' available, ranging from sexual health screening to 'well wo/man' screening they have no package which covers screening of a potential breast milk donor.  That's as much information as I was able to get out of them - and I was directed to call three different departments before I was given the number which ended in a recorded message...

After looking at a few more websites I came acress www.medichecks.com .  I rang them up and they were a totally different story - very knowledgable and helpful.  They charge 'full price' for the most expensive test and then a reduced rate for further tests.  By my reckoning the necessary tests would cost £489.35 in total with this private company. 

However, I spoke to a member of their team, and they are now going to offer the complete package of tests for a discounted £199.  It's something there's (potentially) a real need for - and it would allay fears for a lot of people. 

It's still a lot of money though, and I recognise that some people might think that I'm flying in the face of the whole breastmilk-sharing concept to mention £££ at all ..  After all, not everyone will be able to afford that sort of money in one go, if at all.  I'm aware that some people may receive milk from more than one donor too, and this would put up the costs again.  With such a depressing economic climate it's certainly a potential problem.   However, when you take into consideration the many problems associated with formula feeding and that it also costs something in the region of £480 to formula feed a baby for a year, £199 is a financial sacrifice some families may feel they want to make.

Formula fed babies develop differently to breastfed infants.  They are more likely to encounter health problems.  Formula feeding should be the last-resort option when breastfeeding isn't possible, and yet somehow it has become the default.

A formula feeding mother can diligently and lovingly make up each and every bottle of formula with water at 70 degrees and a newly sterilised bottle.  Her child is at an increased risk of many things despite her precautions.  A mother who wishes to give her child breastmilk can take all the precautions possible and it she still won't eliminate risk entirely.  Heck, I don't even know if I have hepatitis C (it's not one of the ones they test you for in pregnancy here), but I've breastfed for over two years now and I'm pregnant again.  Since a quarter of people here in NI don't know they've got the disease, some people might consider me irresponsible.  I'd have to disagree.  The risk is negligible.  I  believe I expose my family to much bigger risks every day.     

The decision about how much risk you expose your baby to if you're unable to breastfeed them yourself  - formula made up in advance, formula made up as needed, pre-made formula, donated milk, screened donated milk, screened and flash pasteurised donated milk - is a question of where your personal comfort-zones lie, and how you perceive the risks involved. 

We don't all have the same tolerance for risk.