The Provincial Authority for The Breastfeeding Committee for Canada

Informal Milk Sharing:Do we have our heads in the sand?

“Milk sharing has deep social (and some might argue biologi-cal roots). It’s not going to just go away because health authorities caution against it. It is part of our past, our present, and most likely our future. What is happening on-line is just scratching the surface”. (Aunchalee Palmquist, Anthrolactology, 2014)

bc baby-friendly network

1.What are families saying?• “I’vecriedafewtimeswhileexplaininghowgratefulmyfamilyandIarefortheirkindness.Ithascompletelyupliftedmyviewofhumanitytoseeallthesestrangersapproachmewithsuchwarmth,givingthegiftoflifetomybabyoutofasenseofloveandthedesiretohelp,withoutaskingforcompensationinreturn.”(Nese)

• “Sinceshestartedchemotherapy,she’sgottensomanydonationsofmilk,wefoundafreezerforstorage,andafewofushavebeentakingturnsnursingherbabytokeepherusedtothebreastwhilehermamaundergoestreatment.”(Heather)

• “Inhisfirst22monthsoflife,myyoungestsonwasnourishedwithbreastmilkfromabout30women,myselfincluded.Ihaveinsufficientglandulartissue(IGT)anddon’tproducemuchmilk.Itriedeverything,includingmedicationandherbs,tostimulatemilkproductionbutnothingworked.”(Allison)

• “Weweresomethingofanovelty:agaycoupleseekingbreastmilkonMilkshare…Itisdifficulttoexpressenoughgratitudeforsuchagiftthatisgivensograciouslyandatnocharge.”(Dr.TafadzwaKasambira,M.D.,M.P.H.)

Why do women and families informally milk share?Intheabsenceofmother'sownmilk,ormilkinadequatevolumes,andwithoutaccesstopasteurizeddonormilkfroma regulatedmilkbank,therearefamilieswhochosetoprovideinformallysharedmilktotheirinfantratherthangivingthebabyahumanmilksubstitute.

3. What has been our official response?It is not the role of the health care provider to promote informal milk sharing. Health Canada (2014), the Canadian Paediatric Society (2014), and the Human Milk Bank Association of North America (HMBANA, 2015) do not endorse the use of unpasteurized donor human milk.

What has been our unofficial response ... don’t ask, don’t tell?

5. Guiding Principles:Any discussion on the risks of informal milk sharing

musttakeplacewithinthelargercontextof

therisksandbenefitsofallinfant

feedingoptions.Throughout

childhood,parentsmakedecisions

regarding the nutrition of their

child.Thesedecisionsmaybe

influencedbytheirbeliefs,values,

andsocialcircumstances.The

rightofparentstomake

informed decisions regarding

the care of their children is

respectedwithinthecontext

of Canadian law

(QueensPrinter,2014).

4. Is all human milk created equal?

ProjectTeam:LaniWittmann,KnowledgeTranslationCoordinator,PerinatalServicesBC;MeggieRoss,PublicHealthMaternityProgram,InteriorHealth;LeaGeiger,LactationConsultant,RoyalInlandHospital;FrancesJones,CoordinatorB.C.Women’sProvincialMilkBankandLactationService,BCWomen’sHospital;SwatiScott,Dietitian,PublicHealth,IslandHealth

Nursing Lucia with a supplemental nursing system filled with donor milk. (Photo Credit: Aunchalee Palmquist, PhD, IBCLC, www.anthrolactology.com)

Assumption of Escalation of Risk: Thismodelisbasedonanumberofassumptions.Itispossiblefortheretobeindividualsituationsofhigherorlowerriskanywhereonthescale;forexample,adonorfamilymembermaybeunawareofa+HepCstatusorfailtodisclosetheiruseofdrugs.

Comparison of Risk between Pasteurized Donor Human Milk and Unpasteurized Donor Human MilkProcess PDHM UDHM

Donor Screening ClearlysetstandardsbyHMBANA Nostandards,informal,andsubjective

Donor’s Serology Tests RequiredlistofserologicaltestssetbyHMBANA Maybeavailableuponrequest,maynotinclude correct lab tests or current status

Treatment Pasteurizedinaregulatedandcontrolledenvironment which Maybetreated.Difficulttoensurecontrolledincludes,temperaturecontrols/containers/refrigeration/etc. environmentfortemperature/container/etc.

Handling and Shipment StandardizedbasedonsetguidelinesbyHMBANA Difficulttoensureconsistenthandling

Post Treatment Milk Screening TestedperguidelinessetbyHMBANA Nottested

(HMBANA, 2014)

Mother’s ownmilk

Pasteurized donor human milk from a regulated milk bank

Unpasteurized donor human milk from family or friend

Unpasteurized donor human milk from community/ face-2-face (unpaid)

Unpasteurized donor human milk from internet (unpaid)

Unpasteurized donor human milk from internet (paid)

Increasing Unknown Risk

Lowest Risk?

Highest Risk?

Where do your values and beliefs lie?

8.The Tool Kit: Resources Developed for Health Care Providers 9. What’s Next?Knowledge Translation

1. ApracticeresourceguideforHCPs

2. Infantsupplementationoptionsalgorithm

3. Scriptforhealthcareproviders

4. Samplepolicyontheuseofunpasteurizeddonorhumanmilk

5. Acknowledgment of Risk form

6. PatientInformationSheet-HealthLinkBC

Infant Supplementation Options AlgorithmBaby requires supplementation • Medical Indications • Maternal Informed Decision

OPTI

ONS

RESO

URCE

S

Human Milk Substitute(Commercial formula)l Not the biological norm4 Readily available and

accepted, considered safe8 Risks: Non-human;

inferior composition, costs, short and long term health risks (e.g. impaired cognitive development, ↑gastrointestinal and re-spiratory tract infections, ↑otitis media, ↑obesity)

Donor Milk - Human Milk Bankl The next best and safest

choice. Pasteurized.4 Benefits of human milk;

rigorous donor/milk screen-ing, Holder pasteurization and milk handling prevents transmission of pathogens and other substances (e.g. nicotine, alcohol, herbal supplements, medications, street drugs)

8 Limited availability

Mother’s Own Expressed Milkl Always the first choice4 The biological norm8 No risks (unless mother’s

milk contraindicated)

l Healthy Families BC: Hand Expression and Pumping Videos

l Baby’s Best Chance

l Donor Human Milk Policy

l BC Women’s Provincial Milk Bank Patient Information

l Consent for Infant Supplementation Form

l Infant Formulas for Healthy Term Infants Compendium

l HealthLinkBC Formula Health Files 69a & 69b: Formula Feeding Your Baby

l Consent for Infant Supplementation Form

l Donor Human Milk Policy

l Informal Milk Sharing: A practice resource for HCPs

l Supplementation with un-pasteurized donor human milk - Script for the HCP

l Informal Milk Sharing Patient Information

l Informal Milk Sharing: Acknowledgement of Risk Form

Donor Milk - Informal Milk Sharing

l Not endorsed by Health Canada or the Canadian Pediatric Society.

4 Benefits of human milk8 Risks: No standard or

reliable donor/milk screening, pasteurization or handling process; ↑risk for transmission of patho-gens and other substances

So far we have engaged in the process of knowledge inquiry, synthesis and tool creation. The Knowledge to Action Cycle provides a framework for toolkit implementation.

Identity problem

Sustainknowledge

use

Evaluateoutcomes

Monitorknowledge

use

Select, tailor, implement

interventions

Assess barriers to knowledge

use

Adapt knowledge to local context

Knowledge Inquiry

Tailo

ring

know

ledg

e

KNOWLEDGE CREATION

Identity, review,select knowledge

ACTION CYCLE(Application)

Synthesis

ProductsTools

Contact email – psbc@phsa.ca

Purpose: A Perinatal Services BC/BC Baby-Friendly Network working group was formed to develop a practice resource tool kit for health care providers on the use of unpasteurized donor human milk, based on the principles of patient-centered care, informed shared decision making, and harm reduction.

2. Who is filling the gap?Breastfeedingispromotedwithouttheneededprotectionandsupport,leavingsomefamiliessearchingformilkfortheirbabies.Pasteurizeddonor humanmilkfromaregulatedmilkbankisnotyetreadilyavailabletomanybabies.Informalmilksharingisfillingthisgap. Informalsharingofhumanmilkisnotanewphenomenon.Throughouthistoryandacrosscultures,milksharing(wet-nursing,cross-nursing,co-nursing, milkdonations)hasbeenusedbyfamiliesasastrategyforinfantfeedingwhenamotherorhermilkwasunavailableorunsuitable.Thepractice,however, enteredthe21stcenturywiththeadventofsocialnetworkingsitesthatareabletoconnectmotherswithoneanother(Thorley,2008).

Just like breasts, milk sharing organizations come in all shapes and sizes.Therearemilksharingorganizationsthatfacilitatefreepeer-to-peersharingofmilkwhosemembersaremotivatedbyaltruisticvalues,andothersthatarebasedonthesaleofdonormilkwithprofitforthedonorand/ortheorganization.

“In an era when the benefits of breast milk are better understood and more scientifically certain than ever, demand for it has created a niche industry.” (Dutton, 2011 www.wired.com)

Eats on Feets:16,616followersinternationally•HM4HB:60,127followersontheglobalpage

Worl

d Milk Sharing Week

Autonomy

Respect

Values

Parental rights

Patient rights

Human rights

Canadian law

Evidence-informed care

Collaboration

Full list of references available on request • April 2015

6. Informed Consent:• Who decides what are ‘reasonable’ alternatives?• Whose values and beliefs prevail?

FORMULA FORMULAINFORMAL SHARED MILK

INFORMAL SHARED MILK

Milk Sharing: Survey of Health care Providers –

Please scan this QR code to participate in our survey,

and to leave us your contact information if you are

interested in receiving the Resource Toolkit when it

becomes available.

(Graham, 2006)

“Basically,it’sa‘don’task,don’ttell’situation,right?SometimesIhavewonderedifamomisbringinginhersister’smilkorsomethinglikethat,butIhaveneverfeltcomfortableraisingthediscussionbecausequitefrankly,Idon’tknowwhatIwouldsay.ImightthinkitisOK,butIdon’tknowifIcanlethergiveitorhowtoadvise her–orhowtochartit!”(NICU Nurse – BC)

“IhavehadmothersinthebreastfeedingclinicwhohavetoldmetheyareusingdonatedmilkoffaFacebookpage.Idon’tknowifourhealthauthorityhasa guidancedocumentaboutthisthisorwhatmyroleshouldbe.Mostofusare awarethisishappeningbutsofarwehaven’taddressedit.Wereallyneed somedirectiononthis.”(PHN, BC)

“TheCanadianPaediatricSocietysaysmilkthatisn’tfromamilkbankshouldn’tbegiventoababy,it’stoounsafeifitisn’tpasteurized–soifamothereveraskedme,IguessIwouldhavetosay‘don’tdoit’.ButnoonehaseveraskedmesoIdon’tthinkthishappensveryoften.”(Family Physician, BC)

7. Milk Sharing Mind Map

Any discussion on the risks of informal milk sharing must take place within the larger context of the risks and

benefits of all infant feeding options.

Governing Principles: recognizing that breast milk and breastfeeding is

the preferred food for infants

Governing Principles: recognizing that breast milk and breastfeeding is the

preferred food for infants

In order to make an informed decision on infant feeding, parents must be aware of all the options. Health care providers need knowledge, skill and

support around delivering risk and benefit messages regarding infant feeding. (OPHA, 2007)

Supplementation with UDHM - Script for the Health Care Provider: The script gives an example of the type of conversation a HCP

might have with parents who have indicated a desire to use UDHM as the method of supplementation for their infant.

Sample Policy • UDHM

HCP Engagement Survey

Acknowledgement of Risk form

Infant Supplementation Options Algorithm: Summarizes risks and benefits of all

supplementation options with links to matching resources

These principles guide the HCP when engaging in a discussion with parents

about their infant feeding choices.

Informal Breast Milk Sharing: a patient handout for parents summarizing the risks and perceived benefits of the use of

UDHM, and harm reduction strategies, including donor screening, flash heating, and the safe collection, storage and

handling of human milk. Parents should be encouraged to take some time to consider their options, learn more, and ask

questions before they decide.

In the context of UDHM, any strategies that aim to reduce the potential negative health

consequences of informal milk sharing would be considered in keeping with harm

reduction principles.

While it is not the role of the HCP to promote informal milk sharing, if parents raise this option for consideration,

the HCP must be able to discuss with the parents evidence-based information on the risks and benefits.

Informal Milk SharingGUIDING

PRINCIPLES OF PATIENT CENTRED

CARE, SHARED INFORMATION

DECISION MAKING, AND HARM REDUCTION

Health Canada, the Canadian Paediatric Society, and the Human Milk Bank Association of North America do not endorse the use of UPDHM.

Getting Started: Sept 2014

BFI Step 6: support mothers to exclusively BF, unless

medically indicated

Collaboration: Working Group developed and representation from PSBC & BCBFN

Goals: To Meet Population and Patient Health Needs

Process

INFORMED DECISION

SHARED INFORMED DECISION

The following decision tools, HCP, and parent information resources have been developed to support this process

PATIENT CENTRED CARE

FAMILY RESOURCESHARM REDUCTION

BACKGROUND

Milk Sharing Work Group: Opening a Can of Worms?

http://fluidsurveys.com/surveys/psbcfluidsurveys/informal-milk-sharing/