PODCAST #39

Owner of a Holey Heart

When Anna Keating’s baby Clement was born, he was diagnosed with two small holes in his heart (aka ventricular septal defect). The doctors told her that this could go one of two ways: either Clement would need major heart surgery in the first year of his life, or it would clear up entirely on its own.

With the stress of it all, Anna’s milk started drying up, and whenever she gave Clement formula he’d just spit it up. Pretty soon he was labeled “failure to thrive.” Anna tried pumping every single hour, after every single feeding, to boost her milk supply, to no avail. She exhausted herself to the point of hallucinating (she was seeing dinosaurs!), so it’s no wonder that when her lactation consultants told her that they did not approve of informal milk sharing, she heard “milk sharing is illegal.” But Anna was so desperate, she decided she didn’t care; she was going to break the law. She sent an email out to all of the lactating women she knew, asking if they would be willing to share their milk with her. Nobody said yes.

Except for a stranger. A Mormon named Tara. Who was willing to be an “outlaw” with her.

Anna and Clement when he was sick

Anna and Clement when he was sick

Tara and her family

Tara and her family

Tara had three kids of her own (she now has four), and she’d deliver the milk to Anna warm and fresh every morning. Without the milk sharing, Anna and Tara say they probably never would’ve become friends—Anna had never been friends with a Mormon before, and Tara had never had a non-Mormon friend. But they soon found that they probably needed each other more than Clement needed Tara’s milk. Listen to this story to find out out why.

Clement, after he plumped up a bit from Tara's milk

Clement, after he plumped up a bit from Tara’s milk

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Milk Bank Resources
As mentioned above, lactation consultants discourage informal milk sharing arrangements like Anna and Tara’s. Here’s why. Lactation consultants would prefer that you use a human milk bank instead, like the Human Milk Bank Association of North America (HMBANA), which they consider to be the “Red Cross” of North American milk banks.

Banked milk is pasteurized, so it lacks the antibodies of fresh human milk. But it still contains many other anti-infective properties and benefits (the same as when you freeze breastmilk). For sick babies, banked milk is often covered under insurance.

Have YOU shared milk with another mom?
Helpful? Disastrous? We want to hear all about it. Tell us, in the comments.

48 thoughts on “PODCAST #39: Owner of a Holey Heart

  1. When my older son was about 5 months old, I met a wonderful woman who was adopting a 2 week old baby in a few days. When I weaned my son, I had easily 2 months worth of milk left in the freezer (I make A LOT of milk) and I just piled it all in a cooler and trucked it over to fill up this new friend’s freezer. She reported that he “drank it all up. I was so happy to have been able to help someone I knew personally. Our sons are the same age and we see them all the time, and I like knowing that I helped welcome him to our community. And, I really really like knowing that not a drop of what I made went wasted.

  2. I felt like I was listening to my own story…our baby’s health issue wasn’t as extreme but still existed and we were told, by all the experts, the same things. It’s nice to know I’m not the only one with this story.

  3. I pumped an obscene amount of milk and was in the process of moving house so I gave over a thousand ounces to a lady who had just adopted baby girl. It really saved my sanity because the idea of all that milk going to waste after all those hours of pumping alone in the night made me weepy. I think if you go through the steps to be safe about it (including getting tested to prove you are healthy) it can be a great thing. I looked into giving my milk to a milk bank but there seemed to be some questions about whether i would be giving to what I thought was charity only to have it sold for top dollar. Thanks for doing this story! If more moms know it happens it won’t be so taboo!

  4. I love this! I found that being pregnant and then a new mom kind of led me to become friends with women I normally wouldn’t have felt I had anything in common. Some of those friendships were great for the time, but didn’t last – but several of them have lasted 5+ years so far. I’ve learned a lot from the friends and the friendships themselves – I am way less quick to judge; I’ve opened my heart to being close to people who have very different perspectives/ lifestyles/ beliefs from me; and I’ve learned parenting, health and family tricks and knowledge that I probably wouldn’t have been exposed to without them. So glad these women were able to connect despite their differences, too!
    I didn’t donate my milk, which makes me cringe looking back – because I had a LOT of extra milk. Far too much of it basically just went down the drain, especially in the first few weeks of my daughter’s life. I didn’t really get how it all worked at first, and the thought of trying to pump while adjusting to life with a newborn was extremely overwhelming. Then later I was on an anti depressant and felt too nervous about sharing my milk, which could potentially have traces of the medicine in it, with any other moms – since it was such a difficult decision for me to continue nursing my baby. Looking back, though, I would’ve done things very differently…

  5. I am actually currently in the process of giving all my frozen milk to a patient of mine! I am a super milk producer and my daughter, who is 1 now, never really liked taking a bottle. Up until 6 months she begrudgingly did it on days I work, but now she just eats more solid food and holds out until I come home to breast feed her. I have an impressive freezer supply that she is completely not interested in. I am a family doctor and a patient of mine is having trouble producing enough milk due to a breast surgery she had many years ago. She complained about this to me, so I told her I’d bring her in all my extra. She told me with her first child she bought it online for some obscene price and was so grateful to be getting it for free. I’m glad it’s not going to waste (though it did make me consider quitting my job and becoming a professional milk maker!).

    1. isn’t it agains the code of ethics for a doctor to do that for their patient? Also, buying breast milk is illegal because it’s a bodily fluid. Much like blood and organs. You should educate your patient that she can get milk for free through milk banks.

      1. Sorry for my delayed response – I hadn’t seen the questions until now. I don’t think it violates my code of ethics as a doctor since I know that I am disease free and pumped and stored the milk properly. Maybe I am not understanding the meaning of your question, though. Do you mean unethical in that the milk is not regulated in a way that a storage bank would regulate it? Or that it is unfair to give the milk to one patient and not others?

        I was about to dump my frozen milk, and this person was in need of breast milk. Since I’m a firm believer in the benefits of breast millk (as is the woman who wanted the milk), it didn’t seem wrong to me in any way. It seemed worse to me to have to dump such a precious resource. I considered looking in to donating to a breast milk bank, but honestly didn’ thave time.

        I did think it was interesting, though, that the woman did not even ask my medical history. Some diseases can be passed through breast milk. I personally (if I ever had to make this decision and thankfully have not had to) would feel uncomfortable about using another person’s milk for this reason. I also just recently read a study that said a lot of milk in milk banks is contaminated with e coli bacteria, from presumably improperly storing the milk or cleaning the pump parts or your hands when handling.

        My patient and I did discuss milk banks, but she was not interested in pursuing that route. Also, I let her know I also did not think that selling breast milk was legal, but her experience was many years ago in a different state.

        This does bring up other interesting questions, though: like would a doctor donating blood for a patient be unethical? Is it less troublesome if it is just a friend donating for another friend? I once worked in a hospital in Kenya and it was routine for staff members to know their own blood type and for patients to ask around for a certain blood type if a patient was having surgery, for example. In such a resource poor situation it was not even questioned. But certainly things are different in this country.

        1. I bring it up because I’m a social worker and this would likely be against our code of ethics. It could be considered violating boundaries, exploitation, and/or conflict of interest. I was curious if doctors have something similar in their code of ethics.
          Likewise, as you brought up, I would think it would be unethical to donate blood specifically to one patient. Perhaps it could be seen as something like favoritism?
          Thanks for coming back and responding.

          1. Thanks for clarifying. I think it would make me uncomfortable/cross boundaries for me unsolicited to ask patients (or anyone) if they wanted my breast milk. I think because she happened to be telling me how badly she wanted to feed her baby with breast milk, and that she was trying to find ways to get some and this happened to be the exact time I was contemplating having to toss a lot of mine, that I don’t feel like it is in violation of ethics in any way. I see it similarly to the podcast story that spurred this conversation: One person helping another person, and less of a doctor/patient exchange. In the same way Tara gladly donated her breast milk to a mother in need, wanting to help, I did the same. I understand how it is a little more complicated since this woman happens to be my patient. Yes, I am a doctor and being a doctor does color a lot of what I do. Yet, I think of myself as a person and human first. In our world where negativity and bad news often dominate, and where people are often too busy to lend a hand at times (as Anna found with a lot of her friends she emailed), it honestly just felt good to be able to help someone.

  6. So much of this story hit close to home. My daughter also had VSD, in addition to ASD. We waited for the hole to close, but she was in congestive heart failure at 12 weeks and had surgery.
    During her two week stay in the PICU, I pumped every two hours around the clock to maintain my milk supply. I became a militant breast feeder, because there was absolutely nothing else I could do for my baby. During that time, I built up an insane supply of breast milk, and took over an entire freezer the PICU.
    Upon returning home with a healthy baby, I stored it all. I heard about a colleague at the university where I worked who had a new baby and a benign brain tomor that prevented her from breast feeding. The hormones from breast feeding cause the tumor to grow behind her eyes and she was legally blind when I met her. She was seeking milk donors. I. gave her a tremendous cooler full of milk. That baby had the milk of 17 mother and he was the biggest boy I have ever seen. Incidentally, after ceasing breast feeding, the tumor shrank and her eye sight returned.

  7. Wow! I can’t believe everything Anna (and her family) went through! And I can’t believe how huge is the gift Tara that gave! It actually brought me to tears… Such a beautiful story and a beautiful friendship! The part that I could really really relate to was when Anna said “Everybody’s so busy, you know… “Everybody’s important and everybody has work to do… And when you’re home with a sick baby, you feel like you can’t call even your best friend, ’cause she’s at work. You don’t really have anything to say, except “This really sucks”. So you don’t want to bother people, even people who love you. They just feel like… they’re in this other world that you’re not in anymore. Of achieveing things and being busy and being important. And Tara made you feel like.. you were her top priority…” I didn’t go through nearly as much as Anna did, but during my depression, that’s exactly how I felt. What got to me was the sheer loneliness of it all. Motherhood can get so lonely! (And if you’re in a severe depression, it can get extremely lonely, to the breaking point…) But enough about me, I just wanted to say that this story is so touching and so heartwarming and so incredibly beautiful. Thank you for sharing!

  8. I was a pretty good milk producer for the first 6 months of breast feeding and was able to give my spare milk to a friend in need. I had an especially large amount (or so it seemed) with my son. Since I could only pump for him, I had actual measurements on what I was producing and was able to make about twice what he needed in a day.
    He was very medically fragile ( trach, vent, PEG tube, life spent in icu), and after he died, I gave all my frozen milk as well as my last heart wrenching pump to that same friend. To be able to give that milk to another baby who also had a rough start gave more meaning to my sons life, and provided a small amount of peace at that very painful time.

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