Have you ever donated breastmilk? Would you ever consider it?
This is Maureen Feral and Heather O’Neal. And this is The Milk Minute. We’re midwives and lactation professionals bringing you the most up-to-date evidence for all things lactation. So you can feel more confident about feeding your baby, body positivity, relationships and mental health. Plus we laugh a little or a lot along the way. So join us for another episode.
Welcome to The Milk Minute Podcast. Hey everybody. So glad to be back. This week, we are doing a really fun interview that I’m so excited for with the Mid Atlantic Milk Bank. Yeah. Denise O’Connor is meeting with us to tell us all about donor milk, who can donate, who can receive it, what the process is of pasteurizing and preparing and all about their whole situation. So if you’ve ever wondered about donor milk, this is the episode for you.
But before we get into that conversation, we’re going to do a listener question. And then of course, we’re going to chat with Denise. And then after that, make sure you stick around for our awards in the alcove, because you never know, you might get the award today.
So our question comes from Heather W today and she asks or says, “I’m about to start taking an antibiotic. I have donor milk frozen, and while I’m taking the antibiotic, would it be okay for my son to be on donor milk for that week and then switch back to mine?” Yeah. So she’s saying that she had donor milk because she didn’t have enough of her own milk for a while.
So should she use that while she’s on an antibiotic and then switch back to her own? And I say, absolutely. Yeah. I mean, the reality is most antibiotics are actually safe while breastfeeding, but if in this case it’s a particular medication that you can’t use while breastfeeding or you just don’t want to risk any of the possible GI upset that comes with using antibiotics while breastfeeding.
Some babies have a little bit of reaction to it, but yeah, no problem. You know, if you want to do that, you have the milk, great. Yeah. Go for it. I mean, it’s, it’s your milk. Once the donor milk is in your freezer, you use it as you think is necessary. And I think it’s probably a good idea to steer clear of the antibiotics in your breast milk, if you have the opportunity to do so. Yeah, it sounds like you do so. Go for it. Sounds good.
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Heather: Okay. Hey everybody! Before we get into this interview, I really wanted to highlight one of our group members in the Facebook group, Breastfeeding for Busy Moms who so kindly wrote her testimonial about her experience with donor milk. I wanted to share this with you all, because I think it’s important to really see how donor milk can impact somebody’s life in such a meaningful way.
So this is from Natalie H. She says, “when we started this breastfeeding journey, everything was new to us. I knew I would face some challenges, but I never knew the hidden reality of what I would face. August 3rd, 2020. I gave birth to a seemingly healthy baby.
I was pumping my life away. I just couldn’t keep up with how much my son was eating. I was talking to my landlord about it. She told me she could donate some milk to us because she also donates to the two local children’s hospitals. So I did some reading in the group and found out that my son at two weeks old is taking in six ounces of breast milk a feeding, which was way too much.
I also found out that he wasn’t supposed to eat for longer than 30 minutes. And he was taking an hour to an hour and a half to eat, even when breastfeeding. This was only the start of our new reality. I was actually pumping the amount my son should have taken, but we noticed noisy breathing. My son was diagnosed with laryngeal tracheomalacia and severe aspiration.
Come to find out, my son wasn’t safe to eat. He ate the amount he was taking because a lot was entering his lungs and he was working so hard just to breathe while eating that he was burning calories quickly. He was two months old when we found out because no one believed me. In January, he had a sedated brain MRI.
We used donor milk then because trying to keep and maintain a pumping schedule after his diagnosis was hard. My now six month old baby is having surgery. We are crossing our fingers we can ditch his tube, but they don’t feel confident and they are thinking he will need a mandibular distraction.
Because of donor milk, my son doesn’t have to starve before his surgeries and he still gets breast milk every day to keep him healthy as possible. A common cold alone can be fatal for my six month old. I have a selfless landlord that is helping us with these medical challenges and she is truly a wonderful woman.”
Natalie, that is an amazing story and a very difficult situation. And I’m so glad that you continued to advocate for your son and you finally got somebody’s attention to do the MRI and notice that he actually had laryngeal tracheomalacia. That is a very difficult diagnosis and we will be thinking about you as you all enter surgery. And we are sending all of the best, thanks and praise to the donors who donated their milk for you and your son.
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All right now, let’s get into this interview with the Mid-Atlantic Milk Bank.
Denise O’Connor: Hello, my name is Denise O’Connor. I’m the founder and executive director of Mid – Atlantic Mothers’ Milk Bank in Pittsburgh, Pennsylvania. I’m a lactation consultant and I’ve been working with breastfeeding mothers and their babies for over 20 years.
Heather: Wow. That’s awesome.
Maureen: Well, how about you start us out by just talking about what does the milk bank do? What’s donor milk? What do you do with it when you get it?
Denise O’Connor: Sure. So when I’m talking about donor milk, I’m talking about banked donor milk, pasteurized donor milk, that comes from an accredited or licensed milk bank.
Humans have been sharing milk since the dawn of humankind, and that can be done in various ways, but that’s not what I’m talking about here. I’m just specifically talking about the lane of banked, pasteurized human donor milk. So what we do is, the best way to describe it is that we’re sort of like a blood bank, but we’re for human milk.
So the populations that we’re serving are the neonatal intensive care units. We’re serving the well baby units in hospitals, and we’re serving out patients that have medical conditions typically. We do have some milk that’s available for discretionary use, but typically our milk is going to babies that have medical needs.
So that’s what we do. And that’s the population that we serve. You know, so we distribute over 20,000 ounces of milk per month to over 40 hospitals in a five state area and dozens and dozens of outpatients. So that’s what we’re doing. You know, every month and we keep growing every month as well.
So I can walk you a little bit through what we do with the milk, the whole process, how it happens. If anyone is interested in a deeper dive, I do encourage you to go look at our website MidAtlanticMilkBank.org. We’re a very transparent organization and we firmly believe that there should be absolutely no mystery surrounding donor milk.
We want the donors to know exactly what’s going on with our milk, and we want the recipients to know exactly what we do with the milk to make it safe. So as a nonprofit, we’re very committed to being 100% transparent. So we are happy to have people come for tours. I mean when there’s not a pandemic going on, we’re always happy to take calls from people, contact us with questions.
We are truly an open book. So the donor milk itself we get the donor milk from volunteer donors. So they are not compensated in any way. We are not allowed to compensate them due to ethical and safety considerations. That is per our accrediting body, which is the human milk banking association of North America.
There are 27 milk banks across North America, three in Canada, and the rest in the United States that are accredited by HMBANA the human milk banking association North America. If someone is outside of our service area, which is Pennsylvania, West Virginia, Maryland, New Jersey or Delaware, they can visit hmbana.org to find out where the closest milk bank is to them.
So we strictly have to follow all of those accrediting guidelines from HMBANA, and we also follow any applicable state guidelines. So Pennsylvania licenses milk banks, Maryland licenses milk banks, New York licenses milk banks. So we have licenses in all of those states as well.
And they typically follow the HMBANA guidelines, but each state has some little quirks, a little additional things that they do as well. So, we follow those guidelines, which say that we cannot be compensating donors. So they’re just generous volunteers. These are moms who are healthy volunteers who just happen to have more milk than their own baby needs.
And so they go through a thorough screening process and then the milk either comes to us either by those moms dropping off to us, or we have a system for them to ship it, which is very easy. We also have depots scattered throughout our service area as well, which makes it convenient for those moms to drop off.
Once the milk reaches our facility it arrives frozen and we end up taking that milk. We defrost it overnight, and then we pull the milk of up to five moms together because what that does is that evens out any nutritional variations. It also increases the immunological profile of that milk as well.
That milk is tested. We do drug testing on our pools. We test the macronutrient content. So we test the protein, the fat, the carbohydrates, and the calories of the milk. And then that milk is bottled and then is pasteurized. And then we pasteurize as a low temperature. It’s something called the holder method, which is 62.5 degrees Celsius for 30 minutes.
And what that low temperature process does, is it inactivates pathogens, all sorts of viruses and bacteria would be inactivated by that pasteurization process. And then after that milk is pasteurized, then we refreeze it. And then it goes out to whoever the recipients are going to be.
Maureen: Thank you so much for explaining that. You know, I have a lot of conversations with people who ask about donation and then they say, but I don’t want my milk to be ruined when it’s pasteurized. So how about I just give it directly to someone?
And I think that it’s really important to dispel that myth, that, you know, the pasteurization process is going to ruin that milk. That’s not what it does. And I really appreciate you explaining that low temperature process because as much as direct community sharing is awesome, it’s so important too that we stock these milk banks.
Denise O’Connor: Well just another little note that about the pasteurization process. So the pasteurization process that I described, the holder method, is the only one that we are allowed to use per our accrediting body guidelines.
And that is because it’s been used for decades and it is the absolute best technology that we have to be able to, you know, strike that balance of making donor milk safe, but keeping all the good stuff. So that low temperature pasteurization keeps a lot of the bio activity. So for example, the main immunological component of breast milk, which is secretory IGA, the majority of that remains intact after the pasteurization process.
Also the human milk oligosaccharides, the HMO’s, which some people, you know, you might’ve seen that. I don’t know why formula companies call HMO’s that they have in formula HMO’s because they’re not derived from humans. They’re actually derived from cows. And then there’s, I don’t know how they manufacture what they call the human milk oligosaccharides.
And I don’t even know which ones there are in there. So because there are hundreds and hundreds and hundreds and hundreds of human milk oligosaccharides, and what’s really cool about those is those are not digested by humans. They make up to one third of human milk and their purpose is to feed good bacteria in our gut.
And so they’re very important for promoting the development of a healthy microbiome, which is so important for some of those babies that we are serving because our recipients are little preterm babies with very immature guts. And so the pasteurization process that we use keeps those HMO’s intact and a whole bunch of other important biological components.
There are other ways to process milk. There is something called, you know, shelf stable milk, which is retort processing that brings the milk up to very high temperature beyond boiling. And so, you know, emerging evidence is sharing of course there’s destruction of all sorts of things like that secretory IGA in the HMO’s when you’re talking about such a harsh method of processing.
Heather: So even if you did use a harsh method of processing, which you all don’t, but even if you did, that’s still superior to formula? Correct?
Denise O’Connor: I don’t know, cause there’s not enough research in that. All the research that has been done using donor milk, if you look at it, it’s all been done with milk that’s been pasteurized by the holder method. So, you know, studies would need to be done on that. I’m not aware. I haven’t looked recently. The last time that I gave a talk about those processing methods was probably like six months ago or so. So, you know, I’m not sure if anything has come up since then, but we just don’t know.
Heather: I gotta be honest. I did not realize that so much of the IGA remained intact after the pasteurization process.
Denise O’Connor: Yes. It’s not, you know, it’s not 90%, but I think it’s like 60 or 70, something like that.
Heather: Better than nothing.
Maureen: Yeah. That’s awesome. And I think it’s reassuring too, for people to know, like, this is, you know, the gentlest process we can use to make sure this is safe milk.
Denise O’Connor: Right. It’s a compromise. I mean, there are things that can be passed through donor milk and, you know, our screening process, sometimes we have to defer moms for things that are perfectly safe for their own babies.
But the problem is, is that we’re working with really fragile, preterm babies. And so, you know, the bar has to be, we can be very conservative. And so our accrediting body has you know, it’s very rigorous and that’s why the pasteurization. Something that would be, you know, a pathogen that would be no big deal that healthy newborns are exposed to all the time, not a problem. But for a little 24 week old gestation baby, it could be very problematic.
Heather: Yeah. So I’m sure there’s going to be people listening to this wondering if they would be a good candidate to be a donor. So is anyone a good candidate or what are the stipulations for being a donor?
Denise O’Connor: So, as I mentioned before, donors are simply healthy lactating women who, have extra milk.
They go through a four-part screening process. So you can always visit our website, which kind of lists some of the deal breakers. Like there are some certain medications, those are the, probably the biggest reasons for deferment. Some other things, you know, that would make it, make you not eligible.
We list a lot of those on our website so that women can determine if they would be an eligible candidate before they, you know, we don’t wanna waste anyone’s time so they can determine that through the website. So if they think they’re a good candidate, then they just contact us either through our website or they will call us or email us.
And then we started the screening process. The first part is a screening interview that’s done either in person or by phone. 99% of the time it’s done by phone. Of course, because we have such a wide service area, five state service area, that takes probably about 15 to 20 minutes. We ask the, the moms questions about their medications and supplement use.
We ask them some basic medical history questions. We ask them about risk factors or bloodborne pathogens. And then most importantly, it’s an opportunity for us to develop a relationship with these donors and to get to know them, for them to ask questions, for us to tell them how we would like them to, you know, label their bags of milk and store their milk and just, you know, develop that rapport with them.
And so, yeah, usually you know, if there’s an issue or there’s something that may make donation not be possible, which doesn’t happen all that often, we usually identify it in the screening interview. So after that screening interview, if everything looks good, we email those moms an application packet, which is just a little deeper dive with some more questions.
We also have them sign a release to allow us to talk to their doctor and their baby’s doctor. And all we do is it’s just a one pager. The donors even see the questions that we’re asking their healthcare provider and their baby’s health care provider. We handle the faxing to those healthcare providers.
Basically what we’re looking for is that that, you know, to let that healthcare provider know, Hey, your patient is interested in milk donation. Are they generally healthy? Is there any concerns that you have? And then on the baby’s side, we’re always looking to make sure that that baby has enough of mom’s own milk and is growing adequately.
The need for that baby to have milk, a donor’s baby, is more important than any donation. So of course we always tell moms if at any time donation doesn’t work for you or it’s arduous, or it’s just not fitting for you. Don’t worry about us. That’s fine. You know, your family and your baby comes first.
So, after we send those off to the doctors and we get those back, which we’ve developed a nice relationship with most practices in our service area. So those practitioners are pretty good about that. And then we send the moms off for blood work. So we’re looking for some simple bloodborne pathogens, similar to what the blood banks are looking for.
So HIV, HTLV, syphilis, and hepatitis. We contract out with quest diagnostics and also with core, which allows moms to go to a hospital as well. Of course we pay for all of that. And then the next part is just you know, bringing your milk to us. And as I mentioned, we have depots and dispensaries that are scattered throughout our service area.
We can do drop-offs to our site in Pittsburgh. And then we also do shipping. I would say the majority of what we have coming in is coming from shipping and it’s a super easy process. We send you a box. We tell you how to pack it. It doesn’t involve ice or anything. It’s super easy. And then we give you a number to call and FedEx comes to your door, picks it up, and then it magically arrives overnight frozen to our facility.
Heather: That does sound like magic.
Maureen: Yeah. I have a follow-up. So I think a lot of our listeners and the people we work with, they don’t really think about donation until they have a full freezer. So is, is it something about that, you know, donor application process? Can you donate milk that you’ve already pumped before then? Or does it just have to be milk pumped after you have testing and you’ve been approved?
Denise O’Connor: No, we could take milk that has been stored up to eight months in the freezer. And so, and it can, we can take milk that was pumped on or before your baby is 18 months.
Heather: Dang. Nice. So we just had somebody the other day who had pumped and pumped and pumped in the beginning, thinking that she wouldn’t have enough when she went back to work and she has a whole freezer full and she was like, anyone know what I can do with this?
We were like, Oh, well, we’re about to have this interview. We’ll ask. Yes, yes.
Denise O’Connor: Yeah. Call us. I mean, that’s, that’s something that we find out a lot. I mean, it is nice for moms that they know that they are going to be accumulating a lot to contact us earlier in the process, just because then we can make sure that they’re labeling their bags. And we also don’t want someone, you know, thinking, Oh, we’re going to donate and I’m going to amass all this milk.
And then they call us and it ends up that they have some quirky thing that doesn’t, you know, that they’re unable to donate. That’s fine for nursing their own baby, but isn’t necessarily fine for donation. But we also have moms who do not qualify for donation. They also sometimes participate.
We have another very cool project and I know that you were all very interested in research, so you’re going to think this is great. We have a new nonprofit that says, the milk bank had a baby. We have a new nonprofit, which is the Human Milk Science Institute and Biobank. So we have a biologic al repository for breast milk samples.
We are the only other, really the only other organization that’s similar of its kind is in San Diego. So it’s another nonprofit. And we take samples from donors and small bits, just the amount of one pumping session. And what we do is we store it in a negative 80 freezer. We also do some preservatives to preserve the RNA and other components in that sample.
And then that is available for researchers. And that isn’t even just confined to pediatrics or neonatology. We get researchers that contact us for immunologists, cancer research, microbiome research, all sorts of things. The only type of researcher that we do not want to hear from, and we will not give you samples is any research that has anything to do, even tangentially in developing a human milk substitute.
So that’s something that they often sign off on their material transfer agreement. So that’s something else that moms can participate in.
Heather: That’s really cool. So can anybody receive this milk? What are the stipulations for being a recipient?
Denise O’Connor: So, as I said, the vast majority of our recipients of course, are being cared for in the hospital, but we have a lot of outpatients as well.
So sometimes that makes up as much as 45% of what we do. It ranges from 20 to 45%. So there is, so the milk does have to be distributed by prescription or hospital order. Although for bridge milk, we’re allowed to distribute tiny amounts. Like a baby that just need a few ounces while mom’s working on our supply.
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We can, we can do that without a prescription, but otherwise there needs to be a prescription or a hospital order. So supply is not an issue. We have so many generous parents that have stepped up. And so, pretty much if there is a medical need for donor milk, regardless of hospital or outpatient, we got you covered, no problem.
So the biggest access barrier of course, would be cost. Cause, I mean, we’re very upfront of what the costs are. We’re $4.10 an ounce. And we’re actually pretty cheap comparatively if you look in all of North America. So insurance coverage is a huge access issue. And so that’s something that we have been working diligently on, have hounded insurance companies.
We’ve only been around for five years, but we’ve developed a really nice relationship. And the insurance companies are beginning to see, wow, you know what this can do because in the inpatient side of things, the hospitals, they’re purchasing milk like a supply, just like they would for, for blood donation, you know, for donated blood. And they have evidence based criteria that they use to distribute it.
So we have no say, we don’t have any direct contact with that. That’s just something that the hospitals are purchasing the milk. Paying for a milk processing fee, not the milk itself, because the milk of course is donated. It’s just all the costs that go into us making it safe.
That’s what we charge the hospitals. But then on the outpatient side of things, again, that’s where it gets a little stickier because of the cost. So what we find is that insurance coverage is evolving. The vast majority of babies who have a medical need, we’re seeing them getting covered by insurance.
Some States have now put in Medicaid mandates for insurance coverage for donor milk. So that’s getting better and better and better. And then for families that require donor milk for a medical need and you know, that insurance just isn’t paying for it or whatever. We do have an income based sliding scale program that provides a 10- 90% discount.
So, we’ve done last year, oh gosh, we did almost $80,000 worth of charity care. So we try to make sure that any, you know, we don’t, we don’t want any child that has a medical need to not get the donor milk that they need. And we do have discretionary use, which we would say that that would be a case where there isn’t a medical need in a baby, but that would be like maybe adoption or you know, just the bridge milk I was talking about.
So sometimes parents will get donor milk for their child who’s, who’s healthy. And that’s a very, very small bit of the volume we do. Like very, very tiny. But again, that would need a doctor’s prescription. We also have some discretionary use that would be deemed discretionary use, but we don’t think it’s discretionary.
Families that are going through, you know, just some terrible crises, such as a family that has a mom who has cancer diagnosis or a maternal death or something like that. And we do have very deep discounts for those families to offer milk to them for so many weeks so that they can kind of process and figure out what they’re doing with long-term nutrition and be able to provide a safe, reliable supply of, of human milk while they’re working through that.
Heather: Yeah. Speaking of that, can we just touch on a sad bit for a minute? But I think that there is such an important role to be played with donor milk and the process of pumping and donation with infant loss.
And I’ve seen a lot of postpartum parents who have lost a child, unfortunately use donor, use the donation process as grieving. So, can you tell us a little bit about how you support those families and what that looks like on your end?
Denise O’Connor: Sure. Well, youso eloquently described that. It’s something that people don’t think of that, you know, pumping could be something that would help with the grieving process, but it is so true.
When we started the milk bank five years ago, we knew that engaging with families that have experienced infant loss was going to be part of what we were going to do. So when we got all the information from the Human Milk banking Association of North America, there was a little book that we got and it was, you know it was a programming for, for bereaved parents.
And so we read it over. Okay. We knew this, but what we were so surprised about when we opened is, first of all, how many families are dealing with infant loss. It is something that we had no clue that there were so many, so many families and also, you know, it made sense. So you have a freezer full of milk, you know, and, and a baby has passed that was in the NICU and they would donate, you know, the parents would donate to us. But we were surprised that no, it’s far more, it’s far more complex than that.
There’s far more needs for that. So as we see those needs, we try to do whatever we can. So one need we found is there was a really a lack of information sometimes to these families. Some hospital systems do such a fantastic job with these moms after a loss and dealing with lactation.
Lactation is the last physical connection that that a mom has to that baby. Lactation after loss is sacred in some ways. And it’s something that we find that some hospital systems do a great job with, but we were getting calls from families that were, you know, maybe in like a smaller hospital, rural area or something, moms who it was their first baby.
And no one told them after their loss, that their milk was gonna come in. Oh my goodness. So, you know, any mom can contact us whether they wanted to donate, or they don’t want to donate. We will, our lactation consultants will help them, answer any questions with helping calm down their supply, whatever it is that that we can help them with.
So we developed a booklet, but with lactation and bereaved mothers. And so our lactation consultants and medical advisory board made this booklet. It mainly goes over some of the comfort things, dealing, you know, maybe with a clogged duct, dealing with engorgement, calming down your supply, things like that.
We do touch upon donation in that booklet, but we do have quotes from families that chose not to donate and families that did choose to donate. So that it really wasn’t about donation. It really was about whatever the information that these parents need. And so we offer that to all hospitals and all practices, and we get lots of people that use those.
So we sent out, oh, gosh, we send out hundreds and hundreds of those, every single, maybe thousands of those every single year. The West Virginia Perinatal Partnership has been just fantastic with bereavement and they have a whole program that they did a couple of years ago which has been phenomenal.
And they do include that pamphlet in their programs. So that’s one thing that we do. We have for those moms that, that donate, we’ve noticed that they kind of come into a few different categories. So sometimes we have moms who they believe that that milk was just for their baby. They want their supply to go down as quickly as possible.
We help them with that. That is a completely normal reaction. And, you know, we help moms with that. And there are some, some parents that have freezers full of milk that they had pumped for their baby and their baby passed. And so they do a one and done donation. And then we have something that you alluded to, which is parents that used to pump even beyond that, that loss. And so oftentimes we find that they may have a certain date that they do it. It perhaps it’s their baby’s due date or they, or they pump for a month or they pump for two months. And we’ve learned so much from all of these parents and all the different choices that they make.
What we find just so amazing are those parents that pump, if for those parents where it’s a right choice for them and they choose to do that, they tell us that the ritual of pumping is extremely comforting allowing themselves to have space to think about their baby and to think about the whole situation has been very healing for them.
So, so we’re learning from these bereaved parents. And again, we try to do whatever we can as the milk bank to, to help. We have a memorial wall that is in our milk bank. It’s right in the middle of our milk bank, right when you walk in, and on each leaf is the name of the baby of a bereaved donor and their birth date.
Unfortunately those leaves just keep, we have to keep adding them and adding them. But we’ve had moms who have, you know, before the pandemic, we don’t have anybody coming in that isn’t a staff now, but before the pandemic , sometimes we’d have some of our families that just came in because they wanted to visit the leaf.
You know, they just wanted to on the anniversary of their baby’s passing or the baby’s birthday. And then we do bring those families in once a year and we have a bereavement luncheon. So all families that, all bereaved donors, and their families are welcome to come in for a tour of the milk bank. And we have had people that have driven five hours to come to this event.
And what’s really interesting about it is, you know, they just like this casual atmosphere of being able to connect with other families that had a shared experience. And we’ve seen some really wonderful friendships and support systems forge from that just organically letting that happen by just having them all in our building at one time.
Heather: That’s huge! Yeah.. I mean, because it can feel so isolating and lonely going through that process and, you know, as, as horrible as it is that the leaves pile up, for you all. When those families all get together and they look around and they see how many other people have gone through it. And then they think about how many other babies who are living today because of the donor milk that they provided.
That is just, that is magic for me. I think that’s, that’s like the ultimate wet nurse. Right.
Maureen: And it’s great that you guys have taken that extra step to provide a bit of a community connection because you know, I doubt that every milk bank does that, you know, and it’s definitely something you didn’t have to do. And you guys really stepped up to do that.
Heather: Right. And just as an aside really quick, I want to let listeners know that we did do an episode on lactation after a loss. So if you’ve experienced a loss, please go check out Episode 25, just so you can kind of hear our tips and tricks on what to expect and how to heal. So we’ll put that in the show notes as well for you guys.
Denise O’Connor: Oh, that’s awesome. I’m going to check that out. I wanna hear that. We do have resources on our site too. We have an entire section on bereavement and we do audit those periodically throughout the year because there’s nothing worse than going to a link and of being defunct.
So we do keep, we do keep those resources up to date and they’re in our whole service area. So not, just Pittsburgh, they’re in all Pennsylvania, West Virginia, though our whole service area. We also have a link to a hand expression video for specifically for a bereaved parents that we have a link we partnered with the Northeast Ohio Group and developed this video.
So it’s a really nice resource because a lot of these different videos about hand expression or pumping, you know, they have lots of pictures of babies and things like that. So we did a specific video, so that’s available.
Heather: That’s awesome. Are there any downsides to donor milk? At all.
Denise O’Connor: Oh gosh, I think the cost is a downside. I mean, that’s, that’s the only downside because it’s an access issue, you know, in my perfect world, all babies whose mothers cannot provide you know all the volumes of human milk that they need would have access to donor milk. I mean, that’s my perfect world. Right? Because then these babies would all have the healthiest microbiomes ever and you know, and that would set them up for, you know, a lifetime of health.
So, you know, that’s my perfect world. I mean, that’s, unfortunately the reality is that there’s lots of things that we have to do. So that’s the only downside. Otherwise, I mean, human milk is perfect for all human babies. So there is no downside to human milk.
Maureen: Okay, well this one, I should have an obvious answer, but we have to ask it anyway. How does donor milk compare to formula? You know, whether we’re talking about a baby in the NICU or even a medically well baby who might need a donation?
Denise O’Connor: Oh good. Now I can get into some really nerdy science stuff. So, which we love doing. So, you know, human milk is, this living substance.
And it is this beautiful mechanism that mother nature has provided to provide everything a child needs. And we can even see this now, you see all this stuff coming out about there being antibodies to COVID in human milk. And, you know, there’s some, I saw some news articles, “Could we use these antibodies for you know, for helping treat human you know, you treat COVID-19?” And you know what I’ve said for years, and this is a perfect illustration of it is that a cool thing about human milk is it’s Mother Nature’s way that she designed to transfer immunological factors from one human being to another.
So of course there will be antibodies over it in the, in the milk in a person that will protect the baby because that’s what human bodies do. So there’s so much cool stuff in human milk. It’s perfectly made for little humans, for their guts. It’s the easiest thing for them to digest and to grow on and has the right ratios.
You know, our human milk is more meant for brain development. And, you know, cognitive development and things like that. So, you know, it has the right balance of nutrients. It has all the different factors and of course immunological support. The human milk oligosaccharides I talked about that help form a healthy microbiome by feeding the good gut bacteria.
And we’re just starting to learn about how amazing human milk is, which is you think that’s ridiculous. I mean, why is this never been studied before? So that’s part of the reason why we open up the bio bank too, because there is more breastmilk researchers now, and there’s more interest in it and you know, there’s this need for samples.
And so this is perfect timing. So I hope we will be finding out even, even more about it. But for these babies that are sick, human milk is, is more than just nutrition it’s medicine. So when we’re talking about the NICU, one of the main reasons that milk banks exist is because of those preterm babies.
So little preterm babies who are significantly premature. I’m talking about babies that we call very low birth weight babies. So these are babies that are born at you know, less than three and a half pounds, they are an incredibly high risk for something called necrotizing enterocolitis, which is one of the most serious emergencies in the NICU. Up to 10% of babies who are born significantly premature develop necrotizing enterocolitis, which we call NEC, which is much easier to say.
So I will be referring to it as NEC. And NEC is an inflammation of the gut and it can be absolutely devastating. Sometimes these are children who look like they’re doing really well and then boom, one day they just get NEC. And it’s very serious. Up to 25% of babies who acquire NEC end up dying. And half, nearly half of them need surgery to remove a portion of the affected intestines.
And that can leave these children with lifelong issues, lifelong digestive issues. Some of these babies even developed short gut syndrome. And so they will need to have multiple surgeries. And so we’re not talking about just that acute stay and the NICU, but we’re talking about, you know, lifetime effects.
And so we want to prevent NEC. And the only thing that we have found that protects NEC, protects babies from NEC is human milk. And so we know an all human milk diet can decrease the incidents of NEC by 80%. And we know that babies who get NEC that have been on an all human milk diet tend to have more benign course of disease and less requirement for surgery.
When we opened up a milk bank, we only had 30, I think it was 33 or 35% of hospitals in Pennsylvania were using donor milk before we opened. That’s now a hundred percent in Pennsylvania and a hundred percent in West Virginia. We’ve seen some really interesting things happen in our immediate area and in Pittsburgh.
So we had one of the hospitals that started using donor milk. They saw a 90% reduction in their cases of surgical NEC in the first year that they use donor milk. So it’s super cool. So there are other populations that are increased risk for NEC as well. So babies that have cardiac defects, they are at risk for NEC as well.
And of course, all the babies that have GI anomalies that they’re born with, we can get them off of IV feeding quicker. They just do so much better when they have an all human milk diet. And so a lot of people ask us why can’t mom just provide that?
The problem is, is that anyone who has been in the NICU knows exactly what the problem is. You could not have a more stressful environment. I mean, these parents are dealing with babies who their status can change at a moment’s notice. These parents are stuck, basically living in a NICU. It’s very stressful for them to keep up their supply.
They need to be pumping every two hours, really. And then just the act of delivering early, a lot of moms who deliver prematurely, even though they’re pumping, pumping, pumping, they have all the lactation support that they can, they’re still not making enough milk. And so the reality is, is that 70% of parents who have a baby in the NICU are not able to make all that their baby needs initially.
So ideally what we’re doing is we’re filling in those gaps and then mom’s supply comes up. And then she’s able to make all that her baby needs and her supply and her breastfeeding her own baby. And there’s nothing better than mom’s own milk. Donor milk is great. It protects those babies until mom’s milk comes, kicks in, but mom’s milk is perfection for her baby.
And so that is also, you know, having access to breastmilk and maternal breastfeeding is what’s going to keep that child out of the hospital once they are discharged as well. So that’s always the goal and we really love it or we hear stories of donors that we’ve had, who their babies were recipients in the NICU.
I mean, that’s the whole process working in perfection and we get a lot of that where we have, you know, a baby that was a recipient and mom goes on, makes enough milk. And she comes back to us, you know, six months later and she’s a donor, so that’s super awesome. And then also some other things that people don’t realize about donor milk in general, talking about babies with medical conditions, there’s a lot of different types of donor milk, too.
So we do a lot of cool stuff with the donor milk. So one of the things we do is sometimes there are babies that have a cardiac issue called chylothorax that can develop. It’s fluid that gets into the lungs. And it can happen after babies get a repair of a cardiac defect. And so those babies need to have skim milk for several weeks after they have their surgery.
And so we skim milk for those babies. We isolate specialty milks. So mothers who have preterm babies make special milk for the first few weeks after they deliver. If we get any donations from preterm moms, we isolate those. And then hospitals use those for babies that are the most at risk for her not growing as expected.
Sometimes we get donors that are on specialty diets, such as a no dairy or no soy. And we isolate that milk too, because sometimes we, usually outpatients, sometimes there’s children that have very, very serious allergies and they need milk from donors that have those diets.
So we isolate claustrum. We actually offer different calories as well because we’re able to measure the calories. And so we can have different calories in milk. We can have 20 calorie, 22, 24. So there’s different types of donor milk too, which I think is, people always find that to be very fascinating.
Heather: Of course, that’s crazy. How in the world do you do that? I mean, especially the kids with allergies. Can we just for a second talk about that because a lot of parents, and we get this all the time. First of all, I don’t truly believe that a lot of these milk allergies are milk allergies. Can I just for the record?
Maureen: Yes, over diagnosed for sure.
Heather: Over diagnosed. Telling parents to cut things out, but you know that aside, for the kids that truly have these allergies, formula is a nightmare to try to, because
Maureen: it’s soy or it’s dairy and it’s like, and those are the two most common allergies, so yeah. Yeah.
Heather: Yeah, and it’s expensive. So like if they think donor milk is expensive, I mean, some of those specialty formulas are just crazy. So if you’re, if you have a kid who truly has an allergy, please look into donor milk as an option.
Denise O’Connor: Yeah, well, we get calls from families all over the country. I mean, what I always say is that, you know, donor milk, in my perfect world, everybody would have donor milk that doesn’t have access to maternal milk.
But the reality is, is in our current system, you know, not every child that does not have access to mom’s own milk, needs donor milk. A lot of, you know, healthy babies will you know, adapt to formula beautifully. And, and that, that’s fine. It’s, it’s great that that’s, that’s an option, right? So but for the children that truly cannot tolerate formula.
I mean, this is critical. So we’ll have children that have things like food, protein induced, enterocolitis, which is that’s a very, very, very serious allergy. And you know, we’re one of only a handful of milk banks that will isolate specialty diets, any, basically anything that’s special that comes along we figure, we’ll isolate it because maybe someone will need it for something.
So that’s sort of how we operate at the milk bank. But for these children, it is, it is truly, they have no other nutrition options. There are children that we’ve seen get off of IV nutrition, which is incredibly hard on a child’s body and runs, you know, lots of risks of infections.
It’s hard on their livers. You know, we’ll see children that have exhausted all forms of nutrition. And then, you know, some will say, well, let’s try donor milk and they turn around. So we’ve seen lots of, lots of little, you know, people think that it’s miraculous. It’s like, no, it makes sense because their little bodies are designed to operate on human milk. Cause they’re little humans.
Heather: So I think this is kind of coming at the perfect time. I mean, not that it’s just now coming, but this being married to the concept that people are starting to get now where food is medicine for adults. So, you know, people that are experiencing inflammatory disorders and then they cut fast food out of their diet and they cut out soda and they’re starting to actually focus on whole foods and surprise, surprise. They get better.
So that is now it’s like, we can now use that same thinking with babies and the more normalized we can make this the better. So thank you for coming and chatting with us about it. It sounds like in the past five years you have grown leaps and bounds, and you’ve got fingers in so many different pots right now, but what is next for the milk bank?
Like what’s next on your wish list and your, and your big dreams? Where are we going?
Denise O’Connor: Gosh, well, You know, our big focus initially was making sure that all the neonatal intensive care units had access to donor milk. And so we’ve really held hands and led through many hospitals, developing donor milk programs and you know, those protocols and getting donor milk into their hospitals.
So, you know, we’ve now come to the point where, you know, all babies in West Virginia and Pennsylvania that are at risk for NEC or premature have you know, GI issues, they all are, all the NICU’s are using donor milk for those babies. So what I’m seeing now is I’m seeing the evolution of donor milk kind of following the same ways that it has in other parts of the countries that have had you know, milk banks for, for decades like in Texas or in Colorado. We’re getting now maternity hospitals that are contacting us. The hospitals are now expanding their criteria to use donor milk for the other populations such as the well babies. You know, who mom’s milk just hasn’t come in and maybe that baby has hypoglycemia or some other indication where that baby needs a little bit of supplement.
Using donor milk for those populations and just expanding their criteria in general. And we’re seeing a lot of that. So it’s really wonderful seeing that evolve. And I think that that’s going to really ramp up and we’re going to see that in the next couple of years. And I wouldn’t be surprised if you know, all the maternity hospitals in a couple of years or are using donor milk regardless of baby’s gestational age or weight or other risk factors.
We’re also seeing our outpatient program grow quite a bit. And we, we love seeing that. And so we just keep working on access and equity issues in that area because we, you know, again, we’re laser focused on making sure that all babies that have a medical need for donor milk are being served.
So, so as you know, expanding and, and reducing the access issues, those are our main priorities.
Heather: So do you think there’ll ever be a time that people will recognize that they’re in crisis or be working with a lactation consultant in the community and they need something now that they can just go to the dispensary?
Like they would go to a Walgreens or something without a prescription and get a bottle of donor milk? Well, that actually is happening in some parts of the country. So the milk bank in Chicago they have dispensaries just like that in pharmacies. So you know, we’re, we’re working on our dispensary program right now.
Denise O’Connor: That was something that we just launched this past year. And you know, really has not been able to you know, pick up the speed that we wanted to because of the pandemic. Right? So a lot of systems and things, you know, everyone’s just focused on COVID. So, but we see that, you know, as the pandemic eases that we’re going to be able to have more and more dispensaries.
So we do, we did open up our first two dispensaries there in Eastern and central PA. And so that’s a huge convenience for recipient families. They can, you know, after discharge they can come and get a couple of bottles of milk if they still need a little bit of supplement until mom’s supply is up to speed.
So yes, hopefully that’ll, that’ll be the case at some point we’re working towards it.
Heather: That’s amazing. Yeah. I’m so excited about that. Oh, goodness.
Maureen: Yeah. Hopefully one day West Virginia will just be able to like, you know, I can be like, Oh, just go down to Davis Memorial. And there’s a dispensary there.
Heather: Yeah. We’re here for it. We’ll, be happy to help in any way. So keep us posted on what you need. Yeah.
Maureen: All right. So as we wrap up our discussion, is there, you know, what, what do you think is the most important takeaway for our listeners today?
Denise O’Connor: Oh, sure. Just to know that milk banks exists and that, you know, if you are a parent that finds yourself with a huge supply of milk you know, to call us and it will be put to very good use.
And that donation is easy and simple. And if you are a parent that your, you know, your baby needs donor milk, and it’s been recommended by your healthcare provider, that it’s evidence-based and it’s safe.
Heather: Oh, that sums it up for me.
Maureen: Yeah, I like it. So let’s do a quick recap of how people can find your bank in particular.
I know you mentioned the website, but this is a good time to shout out any social media websites, anything you’ve got.
Oh, sure. So our website is MidAtlanticMilkBank.org. We have tons of information, whether you are a family that wants to donate, whether you’re a family that needs donor milk, or if you’re a clinician. We do have donor milk in your neighborhood, which we do not have any dispensaries and depots yet in West Virginia, but we’re working on it, but that’s a whole separate site for our depot and dispensary program.
We also are of course, active on social media. You can find us on Facebook, on Instagram and on Twitter.
Heather: Awesome. Well, thank you so much for coming today. This is life-changing for so many people. Moms, babies, dads, partners.
Maureen: And like, it’s just great for us too, to finally get to talk more in depth about this, you know, I’ve met with y’all’s representatives at every perinatal conference in West Virginia for the last five years. And it’s on our post pandemic travel list to come take a tour. Whenever that is.
Denise O’Connor: I have to say, you know, it’s funny. Cause I, I sometimes, you know, when terrible things happen in the world or whatever, like, like it’s so calming being at the milk bank. But you go into the freezer where all of that milk is because it’s like a tangible representation of a goodness of humanity, right?
Tens of thousands of bottles of donated, you know, medicine that is, you know, for all these little babies. And I mean, it’s just such a tangible representation of goodness and all that’s right in the world. So, yeah. So we would love to have you come to the milk bank and we are always open for tours and we typically do open houses too a couple of times a year and we’ve had students from WVU come to our milk bank as part of their curriculum. And we’re hoping to be able to do all that again, you know, soon. You know, once things calm down and we can have people in the milk bank. Cause that’s something, our staff truly misses.
We miss seeing the little babies and we miss seeing the donors and we miss seeing the, you know, the recipient families come who are local and pick up and seeing the students. It’s unfortunately can’t see people face to face.
Heather: Well, Hey, please send us a selfie of you in the freezer of goodness so we can use it on social media.
Denise O’Connor: Yes! That’s what we’ll call the freezer room of goodness. Because that really is what it is.
Heather: We will take all the pictures that you have, so we can put it on social media and put it everywhere it needs to be. So we’ll spread the love. Yeah. Just send it to my email. And if anybody has questions about this, email us at [email protected] and we’ll get you the resources that you need, because we are all about this right now, this right now and forever.
Denise O’Connor: Excellent. Well, thank you.
Heather: All right. Thank you so much.
So welcome to the awards in the alcove. Yes. It’s time for awards in the alcove. Today’s award goes to Amy H. She says that she made it to 12 weeks and finally found a pump and flange size that works, and she gets milk from, and she put a hilarious little emoji where she’s laughing. Which means that she’s tried a million different things and she’s finally found the right one.
And she said it was nice to see that two ounces came out easily after her baby girl was fed on top of it. Dang. Yeah. Two ounces after feeding is actually a lot, by the way. So great job making sure that you’re getting the right flange size. We always want to make sure that you have the right pumping parts and be sure to check out episode 32 for how to maximize your pumping output, because we give all kinds of tips and tricks for that scenario.
So we’re going to give you the measuring up award. Oh yeah. I like that girl. You’re measuring up today and every day. All right, guys. Thanks for joining us today. Don’t forget that you all are wonderful out there. You’re doing your best to feed your baby and we love you for it. We sure do. We love you guys.
And don’t forget to email us at [email protected] if you have a breastfeeding win that you want to share, or a question that you want us to read on the air, bye-bye bye-bye. Thanks for listening to the milk minute. If you haven’t already please like, subscribe, and review our podcasts wherever you listen.
If you’d like to support our podcast, you can find us on Patreon at Patreon.com/MilkMinutePodcast. To send us feedback, personal stories, or just to chat, you can send us an email at [email protected]