Winning the Milk Lottery

In celebration of World Milksharing Week 2012, Diana West, BA, IBCLC, contributes this post about her personal story involving her son’s extreme allergies. Diana experienced internet milk donation before the existence of Facebook-based networks. Her highly informative books, Defining Your Own Success: Breastfeeding After Reduction Surgery and The Breastfeeding Mother’s Guide to Making More Milk have helped many thousands of parents struggling with low milk supply and have great relevance to the milksharing community. She is also the co-author of the bestselling book, The Womanly Art of Breastfeeding, 8th ed. Watch for her upcoming book about sleep and the breastfed baby, co-authored with Diane Wiessinger and Linda Smith, to be published by Ballantine Books in July, 2013.

Through the years, I’ve shared my story about breastfeeding after breast reduction surgery with many people. I didn’t have enough milk for my first son, Alex, but I was proud to be able to provide about 2/3 of his daily needs with my own milk, which I was pumping exclusively because he had a nursing strike at three months that I hadn’t known how to get past. Unfortunately, we had discovered from several scary reactions that he was severely allergic to cow’s milk protein, so we had to use the uber-expensive hydrolysate formulas to take up the slack. The part of the story that most folks don’t know is that he was once the lucky recipient of 700 ounces of human milk that was given to us by a very special mother in New Jersey.

The way this came about was that I saw a posting on a breastfeeding usenet newsgroup – in 1995, usenet newsgroups were the way people connected online using very basic, non-website message boards (pretty primitive, I know! – but it was great at the time). One day when Alex was about six months old, I saw a posting from a mom who had a seven-month-old baby. She wrote that she had accumulated more frozen milk for going back to work than her baby could ever use and she wanted to give it to a mom who didn’t have enough milk and a baby who had a special need for it. She had also undergone extensive infertility treatments in order to conceive her baby, so she had negative test results for just about every communicable disease under the sun to prove that her milk was safe. She clearly expressed that she didn’t want any payment for the milk other than the good feeling that it was going to a mom and baby who really needed it. With my low supply and Alex’s severe cow’s milk allergy, we fit the bill perfectly. The only catch was that the recipient needed to be within driving distance of her home to be able to transport the large quantity of milk inexpensively without thawing. Fortunately, we lived only three hours away.

Hoping against hope and feeling like it was almost too good to be true, I responded to her post as soon as I saw it, telling her our story and how much we would value her milk. I was amazed and elated when she responded just a few minutes later, agreeing that we were the perfect match and choosing us to receive her milk. I felt like we won the lottery. Not only would this help Alex with his allergies tremendously – hydrolysate formula has pre-digested milk proteins that cause fewer allergic reactions, but Alex’s severe eczema was proof that he still reacted to it – it would also save us a lot of money because hydrolysate formula cost about four times the price of regular formula. I was a stay-at-home mom and my husband was just starting out in his IT career, so times were tough and the cost of the special formula was a real stretch for us.

Once it was confirmed that we had “won” the milk, the milk-rich mom and I emailed back and forth to figure out how to get the milk from her location in New Jersey to ours in Maryland. The biggest challenges were figuring out how to keep the hundreds of two and four ounce bags of milk frozen on the three-hour journey home. My husband Brad and I also had to think of a way to store them safely when our only freezer was the small one on top of our fridge that was already jam packed with food. And all the maneuvers had to include our six-month old baby and Brad’s work schedule since we didn’t have family nearby to help out.

The storage problem was solved by deciding to buy the deep freezer we’d always wanted anyway. It was a big expense for us in those days, but we knew it would give us a way to buy food in bulk so it would actually pay for itself in the long run. We solved the journey problem by working out that we could drive there on a Saturday afternoon with baby Alex and lots of toys to entertain him (this was before DVD players and iPads!), pick up the milk bags, put them in several large insulated coolers that we borrowed from friends, stay long enough to visit with the family and thank them properly, and then drive back home fast enough without breaking any speed limits to put the milk in the new deep freezer before it thawed.

As it turned out, on the morning of the trip it took us forever to get the car packed with Alex, his toys, the many coolers, and everything else we needed for a day away from home with a little baby and an exclusively pumping mom. By the time we hit the road, we were running several hours behind, which kept the New Jersey family waiting anxiously for our arrival. The whole family had dressed up and readied their home for our visit, and while they waited and waited for us to get there, the older kids rode their bikes up and down their road looking for our car. We felt like such newbie, inefficient parents to keep them waiting like that, but they were so sweet and welcoming when we finally arrived.

Milk siblings forever.

As a special (but very token) way to thank them, I had made up a purple t-shirt for Alex that said “Milk Brother” and one for her baby that said “Milk Sister,” based on the Islamic teachings that children who share a mother’s milk are considered siblings and not allowed to marry. (Neither of us is Muslim, but we liked the tradition.) The mom loved the shirts. We put them on the babies and let them crawl around each other in her back yard while we snapped pictures. Then both families went out to a nice dinner and basked in the good feelings of their altruism and our deep gratefulness. Afterward, we loaded all the milk into the insulated coolers and started the urgent (but not speeding!) drive home. We made it back in good time and got all the milk safely into its new home in the deep freezer.

I don’t remember how long the milk lasted, but because he was so severely allergic to cow’s milk and many other foods, Alex needed milk and formula until he was nearly two. So we stretched those 700 ounces out as long as we could and always felt so happy each time we could use human milk instead of the expensive and horrible smelling hydrolysate formula. Eventually, the deep freezer bought just for the milk became more and more empty and we began filling it up with frozen vegetables and other foods. Alex is now almost 17 years old, and shaving and driving if you can believe it (and very embarrassed that I’m blogging about this). The milk and his need for it are long gone, but we still have the deep freezer and we’ll always have the warm and wonderful memory of a mother in New Jersey who shared her milk bounty to help our baby.