Jessica Welborn is a PhD student at Santa Barbara Graduate Institute Class of 2003 and is currently involved in the data collection phase of her dissertation; a qualitative study that explores the experience of donating breast milk following a perinatal loss.  Jessica has been working with the Mother’s Milk Bank in San Jose, California as well as the Mother’s Milk Bank in Columbus, Ohio where she has been interviewing women who have volunteered to share their experience of donating breast milk following the perinatal loss of their child.  Recently Jessica also visited iThemba Lethu, a transitional home and breast milk bank in Durban, South Africa.

Jessica, please clarify how you define “perinatal loss” in regards to your research?

Perinatal loss includes loosing a baby a month prior to the due date, a stillbirth, or a month postpartum.  However, my definition has had to expand a bit to include some of my research participants.  For example, one of the women that I interviewed experienced a loss earlier than one month prior to her due date and some of the women lost their child two months after birth.  I have included these cases because they donated milk.

What are the circumstances in which women have decided to donate their breast milk following the loss of their child?

In many cases a child is born with complications but survives for 1 month, or 2 months, and during this time the mother continued to pump her milk with the idea that eventually she will be able to feed her baby.  In the event that the child doesn’t survive, they are left with a lot of left over breast milk that they have been storing for sometimes 2 or 3 months and in addition to that they are still producing milk as a result of the pumping.  For many of the women that I’ve interviewed so far, the idea of throwing it all down the drain is almost more than they can bear and so they search out an alternative such as donating.

Are mothers who have suffered a “perinatal loss” informed about donating their breast milk or is it up to them to research their alternatives and locate a milk bank?

The topic of awareness definitely sparked my initial interest in the psychology of donating breast milk because on the whole not a lot of women know about milk banking and that they have an option to donate their breast milk whether they’ve had a healthy baby and have extra milk, or if they lost a child and want to do something meaningful with what they have left of that experience. 

Many hospitals, doctors, and midwives know about this option but may only inform a mother when she has given birth to a healthy baby and has expressed to her doctor that she has extra or excessive milk.  But for women who have experienced a loss it is definitely a more difficult subject that requires a much more sensitive way of informing a mother of her options.  Usually the only advice hospital staff give is how to dry up their milk as soon as possible because they don’t want to traumatize the mother or make her feel obligated to donate her milk.

However, based on my interviews, and I’ve interviewed about 17 women so far and I’ll interview one more before I finish, the majority of them have this milk and don’t want to throw it away but they don’t know what to do with it because information about donating their breast milk was not provided to them at the hospital.  And many of these women felt like it would have been beneficial for them to know that they had the option to donate instead of coming home, sometimes weeks later, and having to figure out on their own what to do with all the milk they had been pumping and storing.  Again I am still in the collection phase of a qualitative study so I’m not ready to make any recommendations but I think information about donating breast milk and breast milk banking should be included in bereavement services but the trick is to find a way to let a woman know that this is something that they can do if they feel compelled but not something that they should ever feel obligated to do.

Are there any organizations that are helping mothers learn about their options to donate breast milk and if so do they offer support to those who have lost a child?

Lactation is just not acknowledged and supported among bereaved mothers.  If your child doesn’t survive it doesn’t mean you won’t lactate in some capacity so even though most bereaved mothers have limited information on how to respond to continued lactation they are still having to deal with it one way or another.  There is however a growing sensitivity to women in this situation and an understanding of the need for these bereaved mothers to be connected to a support group that acknowledges lactation and the continuation of this function after the sudden loss of an infant but there is still a long way to go.  For anyone who is interested I would suggest looking in to The Human Milk Banking Association of North America.   Their website is http://www.hmbana.org/

In August of this year you spent time at a non-profit transitional home in Durban, South Africa named iThemba Lethu meaning, “I have a destiny.”  Tell us about your connection to iThemba Lethu and how their mission involves breast milk banking.

iThemba Lethu was constituted in November 2000 by Anna Coutsoudis, PhD, a professor in the Department of Pediatrics and Child Health at the University of KwaZulu-Natal in Durban, and seeks to impact the lives of children who have been orphaned by the HIV/AIDS virus.  The home cares for approximately six children at a time ranging in age from just a few weeks old to three years old and the children are sometimes HIV positive. 

The purpose of the home is to give individual attention to both the holistic care of the children and also the adoption process that includes several employees completely devoted to finding a loving, safe, and permanent home for them.  Because some of the children in the home are HIV positive and as young as just a few weeks old, the health of these children is a large aspect of their care.  Based on Anna’s research concerning breast milk versus formula milk, and the apparent health benefits of breast milk for young children battling infection, iThemba Lethu established the first and only independent community breast milk bank in South Africa.

For the last several years Anna’s research has been focused around breastfeeding and HIV, specifically considering the recommendation for all women who are HIV positive to exclusively formula feed.  However, in a developing country where at times there isn’t access to clean water, or electricity to boil the water for the formula it can be difficult for many of the women to follow those recommendations.  At times it can also be difficult for women to get the formula itself and so for a mother who is HIV positive feeding her infant or child can be a challenge.  In response to this reality much of Anna’s research has been focused on the rate of transmission from breastfeeding women who have HIV.  An interesting discovery is that the highest rate of transmission from the mother to the baby happens when a woman both formula feeds and breastfeeds because the formula makes tiny wholes in the stomach and intestines of an infant which creates a pathway for the virus.  Anna’s research regarding transmission, HIV, and breastfeeding may lead to new and healthier recommendations for women who are trying to feed their babies.   

I was first introduced to Anna at a conference in Washington D.C. in the fall of 2005 where Anna was presenting on the importance of breast milk and breast milk banking.  Following the conference, my interest lead me to remain in close contact with Anna who in 2007 invited me to visit iThemba Lethu and the first and only community breast milk bank in South Africa.

Why is it so important for infants and children with HIV or other infections to be fed breast milk as opposed to strictly formula?

Many of the children at iThemba Lethu come into the home after being abandoned and spending some time in a safe house or an institution where they receive very little attention and are strictly fed formula milk.  Not all of the children have HIV but many have either severe eczema or respitory and ear infections and they were finding that the formula may have been aggravating these infections.  As a result of Anna’s many connections in Durban she knew a few women who had recently given birth and she approached them about donating their extra breast milk.  Knowing that the ideal nutrition for an infant is it’s mother’s milk, Anna wanted to see if the babies at iThemba Lethu would do better with the next best option being human breast milk rather then formula milk.

There were three or four initial donors that were screened based on a life style questionnaire and the results of their prenatal blood work and their milk was pasteurized and given initially to those children at iThemba Lethu who were HIV positive or struggling with another severe infection.  Immediately the children’s conditions seemed to improve, most notably the children who had suffered from severe eczema all over their bodies.  Suddenly the arms and legs of these children began to clear up and those that were having trouble breathing were doing much better.  Essentially the results were phenomenal.

It has been known for some time that breast milk is essential to the health of an infant.  In the U.S. most of the breast milk that is donated goes to the neonatal intensive care unit in a hospital and is given to severely premature or an otherwise vulnerable population of infants that require the special nutrients and benefits of human breast milk.  In South Africa where many orphaned children require extra nutrients to counteract viral infections such as HIV, breast milk is an especially important part of the equation and Anna Coutsoudis spends a lot of her time educating hospitals on the benefits of breast milk and how to begin a breast milk bank.  At this point there is a milk bank in Durban, a milk bank in Cape Town, and a milk bank in Johannesburg all connected to the hospitals there but iThemba Lethu is the only independent and community breast milk bank.

How did you initially become interested and involved with milk banking?

I had just started school in the fall of 2003 at SBGI and I was reading a book that I found at a pregnancy resource center in San Francisco called Natural Resources. The book was titled “Fresh Milk, The Secret Life of Breasts” written by Fiona Giles, a feminist author from Australia, that touches on all different aspects of breast milk, breastfeeding, and how our society perceives breasts on the whole. In her book she discusses a trip to the states where she visited a milk bank in Austin, Texas.  She was so fascinated by milk banking that she devoted an entire chapter to her experience there including a profile on a woman who had given birth to a health baby that later died of complications two months postpartum. The woman she profiled was left with this supply of milk, didn’t want to throw it away, and came across information about a milk bank.  The bereaved woman actually continued to pump her milk all the way up to when she got pregnant again.

Did the profile of this bereaved women in the book go into the psychological aspect of donating her breast milk?

Yes. In the book the woman talked about how much pumping helped her grieve the loss of her daughter and also gave her life meaning and provided her an opportunity to provide a better start for other babies as she was not able to feed her own. It was a way to give that experience of having all this milk but not having a child a positive meaning and I found this chapter in the book especially beautiful and interesting.

I always knew you could donate your blood, but until I read this book I had no idea that women could donate their milk and why a woman would want to donate her milk. And what that means and where it goes, and “Fresh Milk” really gave me this understanding of how a milk bank operates and this is what that milk is used for and then the flip side – the side of the women who are donating and how that experience affects specifically a woman who has lost a baby and why they would feel compelled to take the time and the energy to pump four, five, six times a day even when she doesn’t have a child to feed but strictly for the purpose of donating.

Essentially it sent me on a journey. I then got online and found a milk bank in my area and within a week I went to visit the Mother’s Milk Bank in San Jose, California.  From there I gradually increased my connection and knowledge leading me now to my dissertation.

For more information regarding The Human Milk Banking Association of North America, the Mother’s Breast Milk Bank, iThemba Lethu, and MOMS (Making Our Milk Safe) please feel free to contact Jessica Welborn at jessicawelborn@usa.net