The Right to Human Milk: In Conversation with Lindsay Groff and Dr Tarah Colaizy of HMBANA (Pt. 1)
As part of our ongoing support of human milk banks this December, we’re thrilled to have both Lindsay Groff and Dr Tarah Colaizy of the Human Milk Banking Association of North America with us to answer our questions around all things milk banking. This is part one of two interviews with these leading experts, in the hopes that we raise awareness and address any misconceptions around this life-saving service.
Q: Thank you so much for joining me! We’re thrilled to be speaking with you both. I'll start by asking you both to please introduce yourselves and the work that you do.
Lindsay: Sure! My name is Lindsay Groff, and I am the Executive Director of HMBANA. The acronym HMBANA stands for the Human Milk Banking Association of North America.
Tarah: And my name is Dr Tarah Colaizy. I'm a Neonatologist and Professor of Paediatrics at the University of Iowa. And I've been involved in donor human milk research and promotion for about 15 years, and I'm currently serving as the volunteer Research Director for HMBANA.
Q: I'd love to jump in with a type of 'origin story' and understand how you both became involved in milk banking and human milk donation?
Tarah: Sure. I was first introduced to the idea of milk donation by a patient that I cared for in the early 2000s. Unfortunately, there was a tragic situation where a mother delivered prematurely due to being hit by a train. Sadly, she passed away, but her child survived after being born 10 weeks early. The family wanted to use the mother's sister to feed this baby - so the baby's aunt's milk. At that time, this was still very unusual, as there were only four or five milk banks in existence in the US. Subsequently, we went through a process to make this type of donation 'okay' at our hospital. When I later moved to the University of Iowa, and I got introduced to the idea of volunteer milk banking, I was intrigued. An article had been published that showed how the use of mother's milk in the neonatal intensive care unit for very preterm infants resulted in measurable developmental advantages. I found this very interesting and wondered if the use of the donated milk in the cases where mothers were not able to make milk would result in similar outcomes. I came in assuming that idea would have been studied but quickly learned that it hadn't. That's what started the very long process of answering those questions and addressing those issues.
Lindsay: My interest started the moment I became a mother. When I became pregnant, I learned that my daughter had a rare birth defect. We were very fortunate to receive lots of prenatal support to talk about best outcomes, and breast milk, I should say, was a big part of that discussion. It was described to me as almost like a medical necessity. Breastfeeding was already part of the plan, and I knew the benefits, but it became so evident that this was a must-do as part of this life-saving intervention for my baby. So, my daughter was born at a children's hospital – which was uncommon at the time – and I was unable to put her at the breast because she was intubated immediately after birth and went on to have several surgeries. I became an exclusive pumper for a year and provided breast milk through an NG tube. I learned a lot about how to pump and keep up my supply, so much so that I was approached by one of our my daughter's nurses to donate back in 2010. I had not of milk donation at the time, but it was really exciting to learn that I wasn't just pumping and providing medicine for my daughter, but that I was potentially saving the lives of other babies in the NICU. Flash forward, my background had always been in non-profits. The nurse approached me and said, "Hey, I know what you do for a living and I know you're so passionate about this. There's a position open." That became my full-circle moment, to serve in this capacity and honor my daughter every day.
Q: There's a statistic here in the UK that says that fewer than one in 100 people know about milk banks. When you're speaking to someone with little to no knowledge about donor milk, how do you introduce it?
Lindsay: An easy way to think about it would be comparing it to donating blood or donating organs. It's so common, that you could put on your driver's licence in the United States. [That] statistic doesn't shock me, but Tarah and I both hope to raise awareness. But that's probably the first thing I explain to people, especially if they give me that look and say something along the lines of, "Oh, I didn't know." Hopefully, it's a positive response. Sometimes people say, "Oh, ick!" I have experienced that kind of reaction before, but once you explain the benefits, people usually get on board.
Tarah: When we have newborn infants in the neonatal ICU, and we're getting ready to feed these very small babies – babies that are born weighing between 500-750 grams – their mothers often haven't started to produce a significant amount of colostrum or milk yet. And so, what I often tell them is that [your] breast milk is the best thing possible for your baby, and it'll increase your baby's chances of surviving and having a healthy life. Because we'd like to get started feeding the baby even before the mother has started making milk, we recommend our donated breast milk from the milk bank. I go on to explain that this is very similar to blood donation, and we screen all donors with blood tests to make sure they're healthy and free from infection. The milk is then pasteurized, just like cow's milk.
We test it for bacteria and make sure it's safe. And I always caveat this to families, that as soon as we have enough of your milk, we will stop using donor milk and we'll start using your milk. Regarding the statistic you mentioned, in the US, mothers are the grassroots. You know, the "mom armies" on social media and in their communities that have increased the prevalence of breastfeeding. I truly hope this will happen in the UK because you’re lagging. But as breastfeeding becomes more and more the norm, more mothers want their babies to get breast milk. They communicate to one another, discuss the importance of human milk, optimize their breastfeeding outcomes. Part of that becomes talking about milk donation.
Q: The UK is certainly lagging behind. I believe that about 40% of mothers stop breastfeeding before 12 weeks, largely because there's a stigma around public breastfeeding, pumping, etc. But another point I wanted to discuss is alternative use cases for donor milk, as well as for preterm infants?
Tarah: HMBANA has a prioritization list for dispensing donor milk, and the pasteurized donor milk that's processed and produced by the HMBANA banks is available by physician prescription to any infant. But, the higher priority tends to be for infants that are premature or have health problems. However, we do dispense milk to healthy term infants whose mothers have insufficient milk supply or to those who are adopted, or babies from same-sex couples, born from fertility assistance, and other cases like that. Unfortunately, due to the cost and the sheer volumes needed, there isn't enough donor milk currently available for healthy term infants who don't have enough mother's milk for extended periods. The more we can support moms in their breastfeeding journeys, that's a better solution than donor milk for the average infant. A lot of women can produce their milk when they’re given the right support.
Lindsay: Yes, I want to echo what Tarah just said. Often, people can focus on the negatives, like the scarcity of donor milk, but what the message should be is that if we as a society supported moms, imagine how much better they would do with their feeding journeys! In theory, that would create more donors because moms are nursing longer. Another point I want to mention is that sometimes when mothers want to exclusively provide breast milk to their baby and for whatever reason, they're having a hard time establishing a supply, milk banks can provide smaller amounts as a bridge.
Tarah: Yes, our newborn nursery in our hospital uses milk in that way, and we do dispense to term babies in that way as well.
Q: You both mentioned earlier how we've all heard about blood donation and organ donation. Why do you think milk banks don't have the same level of awareness? Is this a larger issue with male-centric research? What are your thoughts?
Lindsay: I'll start from that point of male-centricity, I do think you're spot on with that. I mean, anything having to do with women, or women's bodies, or anything that is unduly recognized as "immodest", you know, God forbid a woman’s breast! It’s always so sexualized…
Tarah: Unless you're trying to sell a car then show the breast, right?
Lindsay: I get really upset because it's so important. The societal norms, as you noted especially in the UK and Tarah, you mentioned the lack of support from communities, and sometimes your own family. Women have an uphill battle, and this persistent notion that women's bodies being seen as a failure, there's so much pressure, and it's intense! We have a long way to go before people will recognize the importance of this and remove the shame and misconception around these issues.
Tarah: Looking at it as a scientist, it's interesting to observe the way milk banking has developed in the United States, which is wonderful and a huge success story. That being said, HMBANA was formed predominantly by women who were just passionate about breast milk and providing it, and the majority of them were not – and are not – doctors or scientists. They are, for example, dieticians, nurses... just educated people that have developed these milk banks as nonprofit entities started by grant donations. And really, to open a milk bank you're banging on doors to get the money you need. On the reverse of that, that's is not how blood donation began, which happened within the patriarchal medical system. We're at a point in milk banking now with better organizational practices and outreach, and a lot of emphasis on scientific research. But you know, milk banking was started by outsiders, and now there are real milk scientists who are getting involved and raising its profile.
Q: On that note, that seems like a great place to leave it. Thank you both so much for your time, and I look forward to continuing the conversation for part two!