Breast milk donation: A spill-all overview of why, where, and how

33EA979D-9BA3-4DBE-A82E-49EA4C550B79When L was born very suddenly, six weeks early and with a previously undetected birth defect, I felt like my body had betrayed me. It had not been able to make my baby healthy, and it had not been able to keep him inside as long as it should have; my body had failed him. On top of that, it had spent months hiding a birth defect that should have been picked up on ultrasounds but wasn’t, and so my body had left me completely unprepared for the journey it had suddenly thrust us into.

Due to L’s surgeries and GI needs, I was not able to hold him in his first days, and I was not able to feed him at all for the first week. I felt helpless. There was nothing I could do to heal my baby, and all of the normal things you’re supposed to do to take care of a newborn had been taken away from me.

The one thing I could do was pump. And so I pumped, and pumped, and pumped.

In the middle of all that helplessness, this was one thing my body was good at. I was very fortunate in that regard. And I clung to it. I pumped before I knew what L’s diagnosis really was. I pumped before I knew whether he’d ever be able to eat anything, ever. And at the first signs of him being able to take even the tiniest 5ml bottles of milk, I pumped harder.

At my peak I was pumping upwards of 60 ounces of breast milk each day. But for the first several months of his life, L was taking less than one ounce total each day, and he didn’t approach anything near full feeds until he was approaching his first birthday.

That made for a lot of excess milk.

The NICU lactation consultants encouraged me to donate my extra milk. At first I was reluctant to part with any of it – what if he needed it?! But as we quickly filled a whole freezer in the NICU, then our entire deep freeze at home, and then our refrigerator freezer as well, and the milk just kept coming, it became clear that I needed to share the wealth.

Donating soon became a way for me to give back, to help other families in similar situations, and to make all of those hours of pumping have a purpose when it became clear that L wasn’t going to be able to use even close to all of it himself.

When I first began donating, I was unfamiliar with the process and had no idea how to differentiate between all the different milk banks. I’ve since donated more than 2,300 ounces and counting across two children – that’s nearly 18 gallons! – and I imagine other moms new to this whole thing may have similar questions, so I’m sharing what I’ve learned.

There are basically two types of milk banks: nonprofit and for-profit.

There are a lot of banks out there these days, but basically all of the legitimate, nonprofit banks in the U.S. are part of the Human Milk Banking Association of North America (HMBANA).

Others, like the Helping Hands Milk Bank, process milk for for-profit companies like Prolacta, who use the donated milk to manufacture high-profit human milk-based nutritional products (i.e. supplements that may be used to fortify milk given to preemies, so your milk is still going to those who need it – but at a high price). I will admit that I did send my initial donation to the Helping Hands Milk Bank, because I was not really familiar with the for-profit/nonprofit milk bank landscape at the time, and they offer a $300 breast pump reimbursement through Prolacta for anyone who qualifies and donates at least 300 ounces. So I can confirm that this particular reimbursement program is at least legitimate, and the reimbursement came as a welcome relief after my insurance company managed to weasel their way out of paying for my first pump. But personally, I would not continue donating to this type of milk bank rather than a nonprofit bank.

There’s also the Mother’s Milk Cooperative, which I’m not even going to bother linking out to. It’s of the for-profit variety, it lures people in with the option of getting paid for your milk but seems suspect in terms of actually paying out, and it has a pretty hazy reputation among online mommy groups (not to mention the fact that when I inquired there about approved supplements, a representative from the MMC replied, “While the supplements you are taking may be perfectly fine for your healthy infant, the milk we collect goes to very sick and premature infants and we must adhere to the strictest safety standards.” Which, as you can imagine, didn’t sit too well with me since I had so much milk to donate precisely because my infant had been both sick and premature.)

In any case, I currently donate through The Milk Bank in Indianapolis, which is a member of HMBANA. The Milk Bank offers “Milk Depots” for easy drop-off of milk donations in St. Louis and in Hannibal, Mo., as well as in multiple locations throughout Indiana, Illinois and Kentucky.

It’s not hard to donate, if you have milk to spare.

There’s a screening process, involving:

  • An intake questionnaire
  • A form to be signed by your doctor
  • A form to be signed by your baby’s pediatrician
  • Basic bloodwork to make sure you’re a healthy donor
  • Super quick check-ins (we’re talking a 30-second email) every couple of months to see if your medications or anything else have changed.

After the screening process has been completed – and it may take a few weeks to process everything – you can simply load your milk in a cooler and drop it off at one of the depots. Alternately, they will provide coolers and a shipping label to ship your breast milk to them, if you prefer. Most banks ask for a minimum donation of 100 ounces, to justify the expense of intake processing for a new donor.

There are quite a few benefits to donating

  • You’re helping some of the tiniest and sickest babies survive and thrive.

I’ll pause here to reiterate my caution against carelessly throwing around the phrase “Breast is best!” without regard for the very complex emotions attached to all the many reasons a mother may be unable to or choose not to breastfeed. But it’s true that for preemies, breast milk does help give them the best chance at survival and at long-term health, and in many cases, preemie moms cannot induce lactation or produce sufficient milk for their baby’s needs. If you have a big supply, you can help.

Other benefits of donating include:

  • Giving back can be cathartic, especially for mothers who have experienced a traumatic birth, medical complications, or loss.
  • Many milk banks will provide supplies, including milk storage bottles, bags, and coolers, so you don’t have to cover that expense out of your own pocket.
  • You put a ton of energy into pumping, and donating your excess makes sure all that work was worth it.
  • It can be a way to teach your kids about sharing. G is still too young to understand, but L goes with me to drop off every time and he understands that we’re giving milk to help babies who are sick like he was.
  • You get your freezer space back. Remember how nice it used to be to buy in bulk?
  • Hey, you’re burning extra calories pumping all that milk! That means you get to eat more chocolate while helping babies. Everybody wins.

There are a lot of milk banks and donor programs out there, so it’s a good idea to do your research if there’s a bank you’re interested in donating through that’s not part of HMBANA. You can click here to see a full list of HMBANA locations, or learn more about human milk banking here.

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PatchMD: An honest review

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Nutrition is difficult when you’re not working with a complete gut. My son, L, has short bowel syndrome as a result of a congenital condition called gastroschisis; his intestinal motility has regulated quite a bit, and that has helped tremendously with his calorie absorption and hydration, which is why we have been able to wean him off of TPN and remove his g-tube over the last year and a half — but vitamins are a different story. He has always had difficulty maintaining his vitamin levels, even when he was getting a vitamin cocktail straight to his veins every night, and without TPN his vitamin deficiencies remain our biggest everyday struggle.

L particularly struggles with absorption of water-soluble vitamins (A, D, E, and K). Our gastroenterologist has actually called him “her most difficult kid” when it comes to vitamin D. Apparently in a typical gut, certain vitamins and nutrients are best absorbed by certain sections of the small intestine; since L’s small bowel didn’t form properly we don’t actually know exactly which sections he has, but since he only has about 20 percent of what he should have and almost all of that has been surgically repaired at this point, L probably just doesn’t have the sections that are best at absorbing these vitamins.

We’ve tried a range of supplement options, ranging from Flintstone chewables (which his labs laughed at) to double doses twice daily of pediatric AquaDEKs, which is a bright orange liquid multivitamin containing the water soluble vitamins A, D, E, and K (let’s pause to appreciate the clever name they came up with for that one!). AquaDEKS is actually designed for kids with cystic fibrosis, who also typically struggle with malabsorption.

The normal range for vitamin D is 20-100. AquaDEKs helped maintain L’s levels when he was receiving TPN, but after stopping TPN and having his central line removed L had never been out of the high teens. GI and our nutritionist did some research and decided to do a trial run of patch vitamins from PatchMD, which they had not tried before with any of their pediatric patients. Since L’s absorption issues lie in his gut, the hope was that patch vitamins, which absorb directly into the bloodstream through the skin, would allow us to bypass that difficulty altogether.

Here’s how it went for L, who was 4 years old at the time:

Effectiveness: We did see a bump up in his numbers within the very first month — although, as is often the case, this test run wasn’t isolated to a single variable. He had successfully learned to swallow pills just the month before, so the initial boost may have actually been a result of the prior month of swallowing his 50K iu vitamin D pills (we had previously been poking holes in them and trying to squeeze their innards into his g-tube, and hoping he got most of it).

With the help of both the Vitamin D3 patch and the adult multivitamin patch, L maintained vitamin D levels in the low 20s and then mid-20s through the summer, putting us in the normal range for the first time ever! I initially thought PatchMD was a huge success for us.

However, this number began to trend down month after month and dipped down near 20 again as the weather turned cold and L was getting less sunshine. Because L had miraculously started swallowing pills like a pro just before his 4th birthday, we ultimately discontinued patch vitamins and went back to an oral multivitamin (we’re currently using DEKAs, which is essentially the capsule version of AquaDEKSs), along with an oral iron supplement and the 50K iu vitamin D — and his vitamin D levels have skyrocketed, hitting 36 and then 45!

So it seems that, for us, patch vitamins are more effective than liquid vitamin supplements, but nothing beats the regular old pill.

Ease of use: So simple. Slap the patches on his back at bedtime and they’ve run their course by morning. We rarely had them come off before morning, and a few times we forgot to remove them and they stayed on all day, even through sweaty outdoor play and weekly “splash day” at preschool. And they are easily removed — L is still a bit traumatized by having tape on his skin after all the sterile dressing changes he’s been through, but it didn’t take long for him to get comfortable with us pulling these off of him.

Pricing: Around $20/month per type of patch before discounts – and they always have coupon codes for 30% or 40% off (the amount varies depending on whether you’re willing to subscribe to a recurring order – which I eventually did, and it was easy to cancel, but you do have to cancel several days before your order is set to ship). We didn’t even try to run it through insurance since these are OTC. Vitamins aren’t cheap, but these were at least a lot more cost-effective than quadruple daily doses of pediatric Aquadeks, which were running us around $30 every two weeks.

Shipping times: Excellent. At its most impressive, I received a shipment notice a whopping 14 minutes after I placed my order! That was probably an anomaly, but the patches always shipped within 36 hours of placing my order, and we received them within 4-5 days at the most — even the time I placed an order at the beginning of a holiday weekend.

Customer service: Meh. I didn’t have a lot of need to interact with customer service, because everything went smoothly with all my orders. The only time I did reach out to them was during a special promotion that wasn’t properly applying to my order — and I didn’t receive a reply.

VERDICT: Proceed with caution.

PatchMD vitamins are very convenient and they did seem to work better for us than some of the liquid supplements we’d tried. If nothing else is working — or if you’re just looking for a hangover cure or a boost for your complexion, both of which the company offers — full steam ahead, it’s worth a try. But if you have any kind of chronic deficiency you’ll want to keep a close watch with regular bloodwork. (Although, if you have any kind of chronic deficiency and don’t monitor it with regular labs, you might want to seek out a new doctor.)

Disclaimers: I did not receive any products or perks in exchange for this review; I simply wanted to offer up our experience, since I didn’t find any reviews from short gut parents when we started patch vitamins. And, I am not a medical professional. I’m a mom. For medical advice, talk to your physician or provider.

Have you tried patch vitamins? What supplements have worked for you? We’re still struggling with iron levels, so I’d love to hear your suggestions!

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Raphael the Girl Tiger: L’s Healing Helper

When we were plunged into our health journey, we had never heard of gastroschisis or short bowel syndrome or TPN or a Broviac or a Mic-Key button or any number of other things. Our world suddenly became very narrow, and very deep. Among those things we had never heard of, however, were a number of organizations and resources available to help families who find themselves in our shoes, which I’ve recently gathered on a shiny new resources page linked in the black bar at the top of each page on this site.

One of these is Avery’s Angels, a foundation dedicated to gastroschisis research, awareness and family support. One of the many amazing things they do is a “Warrior’s Christmas” program, through which they provide Healing Helpers to kids who face ongoing medical challenges due to gastroschisis. And this year, L was chosen as one of their Warriors.

Meet Raphael the Girl Tiger:

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(Cousin C, I think we may be inadvertently channeling Hank the Girl Cat.)

With all the boxes of medical supplies that show up on our doorstep (see those boxes of Pediasure stacked over there?), you’d think L’s enthusiasm for opening packages would have been tempered by this point. But he is continually elated to open each box to find out what’s inside, and this time the contents did not disappoint.

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Raphael the Girl Tiger has had intestinal surgery that left a scar just like L’s, and she also has a g-button and scars where her line and her ostomy used to be.

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Here, L is performing primary closure:

L has never been attached to any one lovey or blanket, but Raphael the Girl Tiger has quickly become a bedtime staple. And, in true short gut fashion, she’s already proven admirably resilient when it comes to being puked on (I’ll spare you the photos on that one).

L, Z and I send our love and thanks to Meghan and the entire team at Avery’s Angels for Raphael, and for the important work they do each day to help families going through medical hell or unimaginable loss.  

If you know of any organizations, blogs, or helpful tips that should be included on my resources page, please let me know!

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