Becoming a Donor to a Human Milk Bank

by Lois D. W. Arnold, MPH, IBCLC

From: LEAVEN, Vol. 36 No. 2, April-May 2000, pp. 19-23

We provide articles from our publications from previous years for reference for our Leaders and members.
Readers are cautioned to remember that research and medical information change over time

A One-Minute History of Donor Milk Banking in the USA

Throughout history there have been numerous examples of women who breastfed or otherwise provided
their milk for infants who were not their biological offspring. Prior to the advent of commercial formulas, wet
nursing was frequently the only way for an infant to survive. As wet nurses became harder to find,
physicians interested in the survival of infants and children looked for other ways to provide human milk to
sick children. Thus the concept of donor human milk banking was born. In the US the first donor milk bank
was founded in Boston in 1911. Unwed mothers were paid to provide their milk to hospitalized infants. They
continued to nurse their own infants to maintain a milk supply, and were screened for disease through a
physical examination. Milk was also pasteurized. During the late 1920s there were numerous donor milk
banks in the USA, including one in the Chicago area which sent milk to the Dionne Quintuplets in Canada in
1934. The American Academy of Pediatrics first published guidelines for milk-banking operations in 1943.

Donor milk banking is defined as the collection, screening, processing, and distribution of human milk from
volunteer breastfeeding mothers. Donor milk is dispensed only by prescription to individuals with medical
and/or nutritional needs which require human milk. Over the years donor milk banking has fallen in and out
of favor with the medical community. During the 1970s when neonatology became a field of its own and
smaller and smaller premature infants began to survive, donor milk was an integral part of feeding these
infants, and numerous donor milk banks existed around the country. The emphasis shifted in the 1980s
when formulas designed especially for premature babies were introduced and HIV became a concern. As
we head into the 21st century, the appropriate emphasis in Neonatal Intensive Care Units is for mothers of
premature infants to provide their own milk. Use of donor milk has shifted in the last 10 years from being
used nearly exclusively for premature infants to currently being used for older infants and children with major
nutritional or immunological problems, as well as for the occasional adult (see Table 1 Clinical Uses). There
has been an increasing trend in the use of this prescription item as well as the expansion of the US donor
milk banking network with the 1999 opening of a new milk bank in Austin Texas. Current barriers to
increased usage are lack of physician awareness of the service and lack of national policy supporting the
use of donor milk in certain clinical situations.

Risks of Informal Sharing of Milk

In the age of potential transmission of HIV, hepatitis, and other viruses through human milk, there is an
increased risk of using a wet nurse. There are also new strains of bacteria that are becoming drug resistant
and extremely dangerous. Informal sharing of milk between nursing mothers who care for each other's
children and nurse them, or sharing expressed milk with a friend or neighbor or acquaintance is not
advisable. Furthermore, the Centers for Disease Control and Prevention specifically recommend against this
informal sharing of milk.

Donor milk banks have put several safeguards into place to prevent the possibility of disease transmission.
First, all donors are carefully screened for diseases of various kinds before their milk is accepted. In the
informal sharing situation this safeguard is usually absent. Additionally, donor milk banks pasteurize all milk
prior to distribution and check it for bacterial content. This safeguard is also not present when women share
milk with each other informally.

Because some individuals may have a viral or bacterial infection but remain asymptomatic (without
symptoms), they may never know that they are infecting another party. For this reason, "knowing someone
well" would be inadequate protection against disease transmission because the carrier is unaware she is
infected. In the case of sexually transmitted diseases or illegal drug use, people may go to extremes to
protect discovery of the behavior that led to the infection.

Finally, there have been cases where family members have nursed or provided milk for each other's
children. This might be considered very safe by some individuals, but for the same reasons listed above may
prove to be unsafe. Imagine the strain on a family relationship and dynamic, not to mention the guilt, if a
child should become ill because of a disease that was transmitted via the shared milk of a relative.

Perhaps the only exception to this situation might be in a hospice situation where the recipient of the milk is
not expected to live. In this case, milk from a family member may alleviate suffering and discomfort caused
by medications or the disease itself. Family members should not expect a quick fix, however, and should
discuss the options thoroughly and be fully aware of the possibility of disease transmission.

What It Takes to Be a Donor

Donors are critical to the success of a donor milk bank. Without donors to provide a safe and continuous
supply of milk, infants and children who need donor milk would be deprived of access to this valuable
resource. The human milk donor must be in good health, have a milk supply in excess of her own infant's
needs, and be motivated to express and donate to the milk bank using the collection protocols provided by
the milk bank. She cannot be high-risk for transmission of blood-borne diseases. No donor receives
payment for her milk.

Most donors choose to express several ounces a day for donation over a period of several weeks or
months. Other mothers discover that they have pumped far more than their own babies will need and may
choose to make a one time donation of several hundred ounces. Some mothers may donate accumulated
expressed milk after a baby dies. This can be a very important part of healing for many families while they
grieve an infant's loss.

The screening process for becoming a donor is a two-stage procedure. First the donor answers a detailed
health history questionnaire. An additional form goes to her primary care provider to verify the accuracy of
her health self-assessment. Potential donors may be excluded for the following reasons:

• receipt of a blood transfusion or blood products within the last 12 months.

• receipt of an organ or tissue transplant within the last 12 months.
• regular use of more than two ounces of hard liquor or its equivalent in a 24-hour period.
• regular use of over-the-counter medications or systemic prescriptions (insulin or thyroid
replacement hormones and progestin-only birth control products are acceptable).
• use of megadose vitamins and/or pharmacologically active herbal preparations,
• total vegetarians (vegans) who do not supplement their diet with B-12 vitamins.
• use of illegal drugs.
• use of tobacco products.
• a history of hepatitis, systemic disorder of any kind, or chronic infections (eg., HIV, HTLV,
tuberculosis).
 • had a sexual partner in the last 12 months who is at risk for HIV, HTLV, or hepatitis (including
anyone with hemophilia, or who has ever used a needle for prescription or non-prescription drugs,
or who has taken money or drugs or for sexual favors).

Once the prospective donor has completed the health history, she then enters stage two of the donor
process and is tested serologically (through blood tests) for HIV-1 and HIV-2, HTLV, Hepatitis B, Hepatitis C,
and syphilis. New tests may be added to this screening panel as new viruses emerge which could create
potential problems for recipients. Milk banks will cover the cost of the serological screening. Repeat donors
are treated as new donors with each pregnancy and must undergo screening again.

Collecting, Storing, Handling, and Shipping

Individual milk banks have protocols which they wish donors to follow while collecting milk. Instructions
about hygiene and hand washing as well as cleaning breast pumps and collecting kits are provided. When a
donor signs on prior to beginning to collect milk, milk banks will provide her with sterile containers in which to
collect, store, and freeze her milk. If she is an out-of-state donor she will be sent containers which will
survive shipping and will be given specific instructions on shipping her milk as well.

When a donor has already collected a substantial quantity of milk prior to donating, it may be accepted in a
variety of containers. However, milk banks prefer to receive milk in containers other than milk storage bags.
First, the bags are extremely messy to deal with in the milk bank. Even the heavier gauge plastic bags tend
to split or leak, and much valuable milk is lost in this way. They are also much more difficult to pour from and
allow numerous opportunities for contamination. Furthermore, a significant amount of fat remains behind on
the surface of these bags and is wasted, thus robbing the pool of donor milk of valuable calories, anti-
infective components and neurologically important fatty acids.

Each US milk bank adheres voluntarily to the Human Milk Banking Association of North America's
(HMBANA) Guidelines for the Establishment and Operation of a Donor Human Milk Bank. However, each
milk bank operates within these Guidelines in slightly different ways, so it is always best to check with the
individual milk bank about the specific protocols which it follows.

Simply because there are no milk banks in a given state does not mean that individuals in that state cannot
donate milk. There are four milk banks in the country which currently accept out-of-state donations and
cover the cost of shipping the milk from the donor to the milk bank. They provide shipping containers and
instructions for packing. While it is always more cost-effective to obtain milk locally, it is not always possible
for local donors to meet recipient demand for donated milk, and so out-of-state donations are accepted. If
there is an ample supply of milk available locally, then out-of-state donors may temporarily be turned away.

Once collected, the donated milk is heat-treated to destroy any bacteria or viruses that may be present.
While some of the components of human milk are heat-sensitive and are destroyed during the heating
process, a substantial number still remain functional in amounts higher than occur in formulas. For example,
the 50 percent of immunoglobulin A (IgA) which remains after human milk is heat-treated is significantly
better than the total absence of IgA in formula! After processing, milk is stored frozen until it is needed.
Shipping of frozen milk is done by overnight delivery service and can be delivered within 24 hours of receipt
of a prescription.

A processing fee is charged on a per ounce basis to the family of the donor milk recipient. This fee helps to
cover some of the costs of screening donors and processing milk. It is not a charge for the milk itself. The
average processing fee within the United States is $2.50 per ounce. However, no individual is denied access
to donor milk for inability to pay, and milk banks frequently write off large bills.

The Recipient Population

In the absence of the infant's own mother's milk, donor milk offers all the benefits of human milk, such as
easy digestibility and immune substances to protect against disease. Furthermore, because it is species-
specific, complications which arise with the use of breast milk substitutes are not seen.

Donor milk has a broad range of therapeutic uses. For the infant who is failing to thrive because of food
intolerance, human milk may be a lifesaver. For the infant whose tissues and organ systems need to mature
or heal, donor milk provides growth factors which facilitate these processes, helping tissues damaged by
illness to repair themselves, and helping the individual to regain health. Donor milk may also help prevent
certain conditions in prematurity that are life-threatening.

Clinical uses of banked donor milk may be arbitrarily divided into nutritional, medicinal or therapeutic, and
preventive uses. In practice, however, donor milk may serve several purposes for the same recipient. For
example, a preterm infant receives not only nourishment from donor milk but also medicinal therapy in the
form of immune substances and growth factors present in donor milk. Necrotizing enterocolitis and food
intolerances are also being prevented through the use of donor milk. Table 1 is a partial list of diagnoses for
which donor milk was prescribed in 1998.

How to Help Mothers Access a Donor Milk Bank in the United States.

As an LLL Leader, you may occasionally be approached by mothers who are looking for donated human
milk for their babies or mothers who want to donate milk. The list above includes milk banks in the USA.
(Table 2). Only the milk banks marked with an asterisk (*) will accept out-of-state donors. Milk banks in other
countries are listed in Table 3.

Milk bank staff are extremely busy and staff sizes vary as do the hours of operation. Frequently the
coordinator of the milk bank is also the lactation consultant for the hospital in which the milk bank is located.
She may be overworked and overextended with little or no volunteer help in the office. For this reason,
potential donors should be advised to be persistent when they do not have their messages returned in a
timely fashion. As an example, in the fall of 1998 there was one paragraph about the need for donors that
appeared in Baby Talk magazine. The office of HMBANA, which had a toll-free number on my answering
machine at the time, was inundated with calls from 49 of the 50 states, upwards of 300 phone calls per day
for several months. Many prospective donors were very angry because of the inability of one person to
handle the volume of donor phone calls. This is a plea to be patient, persistent, and understanding with milk
bank staff.

Comments from Parents of Milk Bank Recipients

• "Donor milk meant the difference between life and death for my baby."
• "As soon as we put Lindsay on mother's milk, everything changed. She's a
to different baby...happy and peaceful."
• "My child might not have lived if it weren't for breast milk donations. She
is adopted and I couldn't provide her with mother's milk.... People don't
 realize that some children can't survive on formula and some mothers
can't provide their own milk"
• "It was hard to be a middle class family and know we could not buy or get
any food our child could eat from the grocery store. Without donor milk,
she could have starved to death in America."

• "Unless you have gone through months with a chronically ill infant, you
cannot appreciate how glorious it is to enjoy a healthy, happy child. A
baby so happy that after a feeding, he can lie in my arms and look up at
me with contentment and trust instead of agony and confusion as to why
eating is so awful."

Table 1
Partial List of Clinical Uses

• Prematurity (multiple cases in all banks)

• IgA-deficient liver transplant patient
• IgA-deficient small bowel transplant patient
• Failure to thrive (FTT), drug exposure in utero
• Seizure disorder, metabolic disorder, low weight gain
• Cerebral palsy, brain stem injury/birth trauma, FTT
• Formula intolerance (multiple cases in all milk banks)
• Allergies to cow milk/soy milk proteins
• Family history of dairy allergy
• Cystic fibrosis, cerebral palsy, formula intolerance
• "Risk for immune deficiency" (= HIV-positive infant)
• Immune deficiency, post operative for cardiac problems
• Multiple birth, prematurity
• Ulcers, aspiration risk, immune deficiency
• Adoption
• Surrogate premature infant with intolerance
• Down syndrome, cardiac anomalies
• Bater Syndrome
• Seizures
• Brain tumor
• Botulism
• Maternal milk insufficiency (several cases)
• Chronic fatigue syndrome post Candidiasis
• Necrotizing enterocolitis (NEC)
• Cerebral palsy, oral aversion, developmental problems, reflux
• Surgical short gut post NEC ( at least 8 short gut cases were helped by
milk banks)
• Multi-visceral organ transplant
• Twins with ventricular septal defect
• Baby with mother diagnosed with 4th stage breast cancer during
pregnancy
• Babies with mothers who had breast reductions (insufficient milk)
• Baby with cancer
• Several adults with cancers of various types

• Netherton syndrome

Table 2
Distributing Milk Banks in the United States

• Regional Milk Bank, Worcester, MA 508.793.6005*

• Wilmington Mothers' Milk Bank, Wilmington, DE 302.733.2340
• Mothers' Milk Bank, Raleigh NC 919.350.8599*
• Mothers' Milk Bank at Austin, TX 512.494.0800
• Mothers' Milk Bank, Denver CO 303.869.1888 *

• Mothers' Milk Bank, San Jose, CA 408.998.4550*

*Accepts out-of-state donors.

Table 3
Milk Banking Worldwide

Brazil Greece
Bulgaria India
The Czech Republic Japan
Denmark Norway
Finland Sweden
France Switzerland
Germany The United Kingdom