I have four children and two stepchildren. As a mom, I chose to breastfeed my infants into toddlerhood. I was able to stay home with my first batch of kiddos until they entered elementary school. Child-led weaning worked well for us; it’s when the toddler replaces nursing sessions with meals over a period of time. We ended our nursing experience around the time they turned fifteen months old. At fifteen months, they were only nursing once a day, so it was an easy transition for both of us. The fourth child started off very much the same way, breastfeeding from the start. The difference with Will is that I returned to work when he turned three months old. I had never pumped and stored milk; my other children were breast to sippy cup kids. I was a little worried about banking enough milk for days when I had to work. Additionally, I worried about the stress of pumping while at work and feared that my supply would dwindle. I began storing milk as early as three weeks and had a hearty frozen supply by the time I went back to working twelve-hour shifts.
Houston, we have a problem:
When Will’s neurological symptoms became more obvious at nine months old, he also became a noisy eater. I didn’t know what all the noise meant until about three months later when an Early Intervention Speech Language Pathologist (SLP) was at the house for a consultation. She asked, ‘does he always sound like that?’ I told her that I thought maybe changing his bottle nipple from a number one to a two changed something, producing the audible noise. She replied, ‘no, that is a disorganized suck.’ All of a sudden a light bulb went on. Will has a disorganized suck because of his worsening neurological condition. He has central hypotonia and cannot hold himself upright, hold his head up long periods of time, and has stopped babbling. Friends, who are physicians would ask me, ‘how are feedings going?’ It still hadn’t registered until I connected the disorganized suck with his other symptoms. What else does this mean? He is also at risk for aspiration.
The suckling action of an infant produces prolactin, which leads to milk production; more suckling leads to more prolactin, which in turn leads to more lactation. This is a positive feedback system: the product (milk) produces more suckling and more hormone. Breastfeeding is all about supply and demand. The baby suckles, or the mom uses a breast pump, and essentially an email is sent to the brain that signals the whole thing continue: Make more milk! The disorganized suck Will had acquired led to him receiving less milk, which in turn made me produce less (decreased supply). The other thing we didn’t anticipate was that his hunger cues changed and it became harder to know when he was hungry. He wouldn’t fuss or pull at me; he would just sink into me and act tired. His weight plateaued. He became a Failure to Thrive (FTT) kid because he wasn’t gaining weight.
Feed the boy:
We began offering my stored supply of milk to satisfy his hunger. Within a few months we had used most of my stored milk despite my effort of pumping while I was at work. I would pump approximately ten ounces of milk during my 14 hours away from the house, and he was drinking twenty or more ounces in my absence. I panicked.
What does a mom do when she feels like her milk isn’t enough? She offers other types of nutrition. Well, Mr. Will would not have it, any of it. PediaSure, powders, ready-made formulas…none of it. I consumed pro-lactation supplements, teas, brownies, cookies, and pumped my ass off. I’d increase my supply by an ounce or two, but that wasn’t enough. The stress of trying to unravel the neurological mystery was not helping matters. From the time he was seven and a half months old, I stayed awake into the early hours of the morning researching Will’s symptoms. My father told me when my stepmother was diagnosed with cancer, ‘when something like this threatens to take something precious from you, you learn everything about it. You become an expert; you become their advocate.’ That is exactly what I did. The more I learned, the more I worried. However, the more I learned, the better my questions became, the stronger I felt holding conversations with what became Will’s team.
Our special boy’s neurological symptoms were worsening:
As Will’s symptoms continued to worsen, we asked our medical team about his weight and nutrition. We went to see a pediatric gastroenterologist, and he recommended a g-tube for supplemental nutrition. He didn’t think it was something we needed to do right away but thought that we could give Will extra breastmilk overnight to boost his calories. My brain began to turn; the nurse in me thought long and hard about this g-tube business. The purpose of this invasive surgery is to give nutrition to people who cannot consume enough calories by mouth or not eat/drink safely. If the purpose of this was to give Will an extra twelve ounces overnight (that was what the GI doctor had recommended), could we not exhaust other noninvasive ways to support Will? I offered him lobster, ice cream, rotisserie chicken, avocado, and anything else we could think of giving him during the day. His weight improved incrementally, he also grew longer; he was growing. Then, he ended up being prescribed prednisone for encephalopathy, and his appetite increased more. He was eating most of what we offered him. We decided to cancel our surgical appointment and see how Will did with nutrition for a month. We traveled to Philadephia’s Children’s Hospital (CHOP) and met with the Leukodystrophy team. They agreed that we should wait on having the surgical procedure and try to adjust his nutrition before going under the knife. We felt relieved that our feelings were validated by the doctors at CHOP. So, for now…no g-tube.
Mother’s Groups on Social Media: The AAA for whatever you need.
Advice on sleep, feeding, vitamins, infant swings, car seat questions, emotional support, the mom groups have the answers. Within moments, these women will rally and come to your aide. In this case, it was breastmilk. I had about a week of milk left in my freezer. My hair was standing on end. I need to find a way to feed my baby. I turned to a private group of Facebook and posted my statement: The stress of caring for my fourteen-month-old baby who suffers from a severe neurological condition has reduced my breastmilk supply and storage; I have a week of milk left in my freezer. I posted this statement to Maine New Mamas Facebook Group and Human Milk for Human Babies. What happened after my plea for help was nothing short of amazing.
Within four hours of posting my plea for help, I had a mom reach out to me and ask where I lived. She had frozen milk on hand and was willing to bring it to my door. I couldn’t believe it. I was thinking, ‘that’s it?’ Within seven hours I had two weeks of milk delivered to my door. Not only did she deliver milk, but she also gave me peace of mind because I was learning that there was help available. This mom became my personal MilkLord. Within moments of meeting her, I learned she was a close friend of a mom I know, so immediately I felt comfortable receiving the milk. Her personal milk quest inspired her to help other women. She has a toddler son and received breastmilk from twenty different sources for her boy! She was so moved by this gift that she committed to helping other women get the milk they needed for their babies. For her child, she received milk from as far as Massachusetts and was part of the milk train that made it possible for milk to be delivered to a child in Camden, Maine. In my opinion, she is undoubtedly the MilkLord for most of New England. Within the next four weeks, I had four other mothers contact me about the stored milk they were willing to share. They delivered to my door. I explained that Will’s condition made it difficult for him to travel in the car and it was some crazy phenomenon we didn’t understand, but horrible to witness.
The gratitude I felt as my baby drank this milk was something I can’t explain with words. What I learned was when mommy needs to feed her baby, the village delivers…And delivers. This bag (pictured below) was brought to me while I was at work in the ED this weekend. My friend’s sister is exploding with extra milk and happily sent some to us. I think this bag weighed about 50 pounds. Incredible.
Women use donated milk for a variety of reasons:
- Mom is receiving chemotherapy or taking other medicines contraindicated in nursing.
- Mom’s milk supply is low, or she has stopped producing.
- Mom has adopted a baby and wanted him or her to receive breastmilk.
Some babies will consume only donated milk; others a mixture of mom’s milk and donor milk; a mix of donor milk and formula; or a mix of all three – mom’s milk, donor milk and formula. There is no one ‘right’ way to feed your baby. Some mom’s donate milk because their loved one refuses to drink the leftover supply. In some cases, women donate milk after they miscarry as a way to process their loss and embrace something positive that came along with their loss.
Obviously, I am a fan of Milk Sharing. But, understand that Milk Sharing may not be the right option for every mother who is in need of an alternative way of feeding her child. I support you in whatever your choices are regarding breastfeeding, donated milk, or formula. Fed is best. The Academy of Pediatrics recommends milk screening to ensure safe milk. Breastmilk is a bodily fluid and can contain trace amounts of medication and also bloodborne pathogens. If not stored properly, the milk can also grow bacteria and if left too long in storage, lose its nutritional properties.