By Susan Koehn
I knew I was pregnant again when the nursing aversions started. I had never experienced a nursing aversion before, but I knew immediately what it was. My skin crawled. It was an awful, unnatural feeling that made me picture pushing my eighteen month old son to the floor every time he latched onto my breast.
But his face. His face made me sit there holding my breath, counting the minutes he had been latched, picturing myself anywhere but beneath the gentle weight of his contented little body with his mouth on my breast. His face. The way his eyes rolled drunkenly just before falling shut. The way the tension, fear, and sadness left it and his body melted over my lap. The way he could switch in an instant from upset to quietly content.
I hoped he would choose to wean himself, because after one look at his face, nuzzled into my breast, I knew I wouldn’t make that decision for him unless my pregnant body forced me to. It got worse when my milk dried up at 14 weeks. He forgot how to latch. He lightly held my nipple between his teeth and flicked it with his tongue. When he did suck, his latch was toothy, awkward and too hard, bruising my nipple. And still, he didn’t choose to stop. Every heartbreak of a nearly two year old was washed away by the milk he only imagined he was getting from my dry, burning nipples.
My expanding belly pushed him further away from my heartbeat. He responded by asking for more time draped over it, tiny hands tucked between my swollen breasts, nursing. Or whatever it was he was doing. I tried to focus on anything except whatever he was doing to my nipples.
After thirty two weeks, my uterus became particularly irritable. Nipple stimulation sent it into painful spasms, waves of contractions. This was when he learned about consent. I let him pretend to nurse when he needed help coping with life. But as soon as I felt my throat tighten and my breath shorten in that telltale panicky way, even before my uterus tightened, I knew another episode was on it’s way, so I asked him to stop as I walked and huffed through it. Put your feet up, my midwife said. Drink plenty of water. Get some help with household chores. She didn’t think to ask if I was nursing my toddler. I knew what her advice would be, so I forgot to mention it. Our nursing sessions became short, sometimes only thirty seconds before I had to end them, and he slowly became used to falling asleep without them.
He took a fall in the playground. It looked like nothing more than a hard landing dismounting from a swing, but when I tried to stand him up and brush him off, he collapsed. I sat in the wet spring snow with him, contracting hard and holding back my own tears as he cried and nursed, then took him in for X-rays, which revealed a buckle fracture on his right distal tibia. The orthopedist predicted he would be weight bearing in his splint in two weeks.
Over the next six weeks, not only did he stop attempting to walk, he stopped crawling as well. Then he stopped wanting to play, crying and throwing his toys when I suggested it, screaming for more TV time, begging for constant rocking and nursing. He stopped eating. When I cooked his favorite things, he ignored them. When I tried to convince him to try them, the dish went flying across the dining room. I had no idea the terrible twos were so terrible. I told myself this was a not-unheard of regression due to the broken leg and his disrupted life. That he resented how his world and my body had changed. That my raging hormones and emotional shortcomings during pregnancy and our recent relocation away from all of our family and friends had created a confused little monster. I tried all of my go-to gentle parenting tricks- giving him all the love and attention I possibly could, reading books together, holding him all night as we slept. I questioned my parenting philosophies, especially as others in my life made vague hints about him just needing a good spanking. My husband stuck by and supported me as every day became a bigger battle with more crying, more meltdowns, more throwing, hitting and biting, followed by yet more nursing interrupted by more stabbing contractions.
After two excruciating, sleepless weeks rocking and breathing through episodes of prodromal labor, walking around 4cm dilated while also carrying Big Brother everywhere since he wouldn’t walk or crawl, I was blessedly, thankfully induced at 39 weeks. Big Brother immediately accepted Little Brother sharing his breasts, and as my milk came in he gnawed lightly on my nipples, trying to remember how to nurse effectively again. I didn’t mind- the aversions disappeared after labor and delivery. My mom drove five hours to help me with the new baby for a few days. “Have you noticed how pale Big Brother is?” She asked. I had, I said, blaming his recent lack of outdoor exercise, but my stomach did a flip-flop. “I mean, he’s not just pale, he’s almost yellow.” She amended. “Not to freak you out.”
As I sat nursing them, both of them sinking deep into the softness of my rearranged post partum belly, I googled anemia. Maybe it’s a deficiency, I thought. I should have tried harder to feed him a more diverse diet. Maybe he hasn’t been getting enough B vitamins or iron. I tried to make an appointment for him, but the pediatrician was booked up for weeks.
Nine days after Little Brother was born, I took Big back to the orthopedist to try to figure out what might be healing abnormally, since he was still not walking six weeks after the fracture. I asked the orthopedist if he thought a deficiency might delay healing. I pointed out a bruise that had been on his cheek for two weeks, his slightly yellow pallor, the dark circles under his eyes. He ordered a blood panel, and no sooner did I have them both loaded in their carseats than he called my cell phone, telling me to take him to an emergency room. Even while still in the centrifuge, it was obvious his blood contained only a fraction of the red cells it should.
I perched uncomfortably on the cot in the emergency room, holding and nursing them both while trying not to slide around too much on my still-stitched nether bits until the ambulance arrived to transfer him to the closest children’s hospital. His dad rode with him while my mom and I followed with Little. The emptiness of Big’s carseat behind me felt like a chill against my back as I realized how empty our lives could become without him.
The doctor who met us at the other end of the ambulance ride introduced himself as a pediatric oncologist. Gut punch. Breathless, but determined to keep smiling brightly and convince Big, as he received one blood transfusion after another, that this was just another fun outing, that nothing was scary. Watching ourselves repeating silly rhymes and making up songs for him, coaxing giggles, while also, somehow, feeling the room slide sideways and the bottom fall out from under everything we had taken for granted.
The first month-long phase of a three year treatment plan for leukemia is called induction. The purpose of induction is to achieve remission. The purpose of the remaining three years is to maintain this remission while mopping up any possible remaining cancerous cells. A staple of this month is relentless, high doses of corticosteroids, which maintain a state of dangerous, often critical neutropenia (lack of white blood cells, thus no immunity to bacteria or viruses.) Thanks to the side effects of these steroids, as soon as the parents of a new diagnosis accept their new reality, their normally sweet child becomes a raging hurricane of homicidal impulses, while also developing the appetite of an olympic swimmer.
Our child had not been normally sweet for six weeks already, due to the deep pain in his bones, the cancer in his bone marrow pushing outward on them, his irritability and exhaustion due less, in hindsight, to him being two and uprooted, and more to his body only containing one-fourth of the blood it should have had in it. The pressure inside his bones was likely the reason he had broken one in the first place. Long bone pain is also a side effect of steroids. As the cancer left his bone marrow, steroids wasted his muscles and made his bones ache for other reasons. I felt sick thinking about the month and a half I had been encouraged, and sorely tempted, to smack him for being awful. Weak with relief that I had chosen instead to offer all the comfort I had to give, the excruciating dry-nursing, even the irritation of my over-dramatic uterus and the possibly resulting induced delivery nine days before his diagnosis.
He needed to nurse. All the time. He never willingly stopped nursing the entire month of induction. If a twenty seven month old can understand hatred, he felt it toward his dad and me as the steroids steamrolled through him, but he still needed to nurse. I held his confused battleground of a body as he kicked me, while he tried to slap and scratch my face as he simultaneously nursed at my breast. My husband and the few visitors we were allowed held newborn Little as I held Big, sweat pouring from him, for hours until he fell asleep, then eased out from under him, changed my milk-soaked, sweat-soaked shirt, and nursed the newborn. I waited for the requisite post-partum meltdown, for the new baby high to wear off and the emotional crash to come, but it didn’t. Or maybe it did and I didn’t notice. Emotions were a luxury I didn’t have time for. The demand on my milk supply was so great I had to pump if they slept for more than an hour or two. The nurses brought in a hospital grade breast pump for me to use, storing a growing stash of milk in the med room milk fridge for visitors to bottle feed Little when I was too distracted with Big to properly breastfeed Little. We watched as Big Brother’s tiny, impish face swelled, becoming cushingoid in appearance, giant chipmunk cheeks sandwiching his features between them. We weathered the storms of a bedridden two-year-old’s impotent rage and caught our breath at the sight of his body swelling until we feared it couldn’t take one more dose of steroids.
The diarrhea caught us by surprise. One day he was fine, if angry, and the next, poop the consistency of melted milkshake exploded out of his diapers. I am not even being hyperbolic. Exploded. Everywhere. Then mucus. Then a dreaded string of blood. His doctors immediately ordered him to be NPO, not even water or breastmilk, fearing neutropenic enterocolitis, a complication with a low survival rate. Abdominal scans revealed portions of inflamed bowel, but no perforations. For fifteen straight hours, he screamed in agony and anger. He clawed at my shirt, at the skin on my chest, digging viciously inside my shirt for nipples, and for the first time in his life, I could not even try to nurse him. His rage and confusion nearly undid us all. The raw ends of my nerves vibrated with each scream. Finally, I pulled all of the hospital room’s furniture in a semicircle around me, barricading myself behind it where he couldn’t see me nursing Little Brother. Leaving him trapped on the bed by his inability to walk or even crawl, I held the baby to my spraying, engorged breasts, which were letting down messily in response to Big’s screams, and breathed. Told myself we would make it through the next ten minutes. And the next ten. And the next. His dad held him as he writhed and clawed at his face, but refused to be put down. Late that night, when his NPO order was finally lifted, I ran to him, gathered his swollen body to mine, ripped off my shirt, and let him melt, exhausted, over me as he gulped, gasping and shuddering, finally falling into his first peaceful sleep of the day.
At night, I placed Little on my chest to sleep as I lay in the hospital bed beside Big, waking often to change his sweat soaked pillowcase, then nurse him back to sleep. Sometimes, I awoke to nurses leaning over us in the dimness, fumbling with IV lines or taking vitals, and realized I had fallen asleep nursing and my bare breasts were staring them in the face. It was humiliating to have them see me so vulnerable, not only asleep, but exposed. My entire survival technique revolved around managing my vulnerability.
Steroids ended, and so did Big’s appetite. Within four weeks, I went from breastfeeding him eighteen hours a day to maybe four hours. Breastmilk became the only thing he would eat as he struggled with chemo-induced nausea, and he no longer nursed with an appetite, he only comfort nursed. I heard him swallow occasionally, a few times per minute. I tried to let my breasts adjust naturally to the decreased demand, but they became so excruciatingly engorged I gave up and pumped sixteen ounces every few hours.
Little Brother grew fast, having to learn to gulp quickly to keep up with the overproduction and spraying letdown. I attended a lactation clinic, and was the only mom there who had brought both a baby and a toddler. While all the new moms desperately tried to increase their milk supply, to get their tiny newborns to latch and eat, I felt like such a heel bearing my hard, bodacious melons, asking how to somehow stop making so much milk. I felt judged. Not by the lactation consultant, who knew our story, but by the other moms who didn’t. My toddler was fat. Genuinely fat. His steroids had him so swollen his beautiful ice-blue eyes had all but disappeared into slits, his lips stuck out, smashed between his cheeks, his stretched-marked, blue-veined belly popped out from under his shirt and dwarfed the atrophied legs sticking out from under it, and I wheeled him around in a jogging stroller. A morbidly obese kid, screaming for french fries and boob, whose mom wouldn’t even make him walk into the clinic. And whose mom, instead of encouraging him to be less of a couch potato, or even doing him the favor of weaning him, already had another baby. A grandmother and her daughter in the clinic took one look at Big and immediately began chattering in a language foreign to me, while casting surreptitious looks in my direction. I have no idea what they were saying, but since I couldn’t understand them, I projected all my embarassment onto them and made my own assumptions. I’m not proud that I made eye contact with the daughter, initiated a conversation with her about her own baby, then dropped the word “cancer” like a bomb right into the middle of the conversation. They were immediately loving, interested, and pitying. I don’t know what I wanted. Not their pity. I just needed to know I wasn’t being judged.
Mouth sores never happened, even though we were warned with each new chemo infusion to expect them. Nor did thrush, a common side effect of steroids. A few months in, I met a breastfeeding mother who’s doctor had told her mucositis in breastfeeding patients seemed to be much less of a problem than usual. He theorized that perhaps the breastmilk somehow coated and protected the entire GI tract. I also met mothers who had weaned their toddlers before their diagnosis, and realized how much their struggle eclipsed mine. They fought the food battle every day, and many had to eventually give in and accept an NG tube.
It humbled me, remembering how badly I had wanted to wean him during my pregnancy, realizing how many problems breastfeeding solved for us now. His languid comfort nursing while he struggled with poorly controlled nausea kept precious nutrients flowing into him. The constant trickle of milk into his stomach seemed to settle it slightly. When he did throw up, often it was only clear liquid, the milk solids staying down. Even on the days he refused my every attempt to encourage fluids, he had wet diapers. The most frustrating thing about his only fluids being from nursing was I could not report his intake accurately. I knew he lay beside me comfort nursing most of the night. But when the nurses asked how many fluids he had during the night, I had to guess. Nurses don’t like to chart guesses.
Every two weeks or so, through the duration of treatment, we check into the pediatric oncology clinic for Propofol anesthesia and a lumbar puncture to inject chemo into his spinal fluid, since this is the only way it will breach the blood/brain barrier and kill the cancerous cells possibly hiding out in there. The pre-anesthesia cutoff for solid foods is eight hours, cow’s milk is six hours, but because it is so quickly digested, breastmilk is allowed until four hours before his procedures. This saves him from hours of hunger and nausea with nothing to help settle his stomach.
His doctors gave us prescriptions for laxatives and warnings about how important it is that his fragile intestinal lining never experience constipation, and how important it is to never use enemas or suppositories, because a lower GI bleed when his platelets are compromised could quickly become emergent. We have never had to get them filled. Once or twice a month, we get more Propofol anesthesia and another dose of IV Vincristine, a staple chemo of the leukemia lineup. Both of these are offenders for constipation. But still, this one poops like a champ. After treatments that are almost guaranteed to constipate, he sometimes drops down to being an every-other-day pooper, but rarely goes three days. With so much of his diet being breastmilk, sometimes the contents of his diapers resemble his baby brother’s more than a two year old’s.
We nurse every time he has to have his mediport accessed. His mediport is a rubbery reservoir under his skin, just below his left clavicle. It connects via a tube into an artery to limit the chemo causing damage to smaller veins. He has been pierced by so many needles through the course of his treatment. Fat ones for fluids and drugs into his port. Long ones injecting chemo into his thighs. Short ones drawing blood from his arm veins. He is determined and stoic, but the tears well up every time, his breathing becomes fast, and sometimes he whimpers as blood is drawn and white hot chemo is shot deep into his muscle tissue. He places my hand over his injection sites so I can gently massage them, and then, a quiver in his soprano little boy voice, asks, “Boo? Pease, mommy? Boo?” And no matter where we are, no matter who is watching, we stop everything, and we share a moment of boo. He looks up into my face with the exact expression of trust he wore while nursing before he learned how cruel life can be, and my heart shatters, only to come back together completely wrapped around him.
The biggest concern throughout treatment is the fact that his immunity is practically nonexistent. His neutrophils are few and far between, and any viral or bacterial load he might be fighting wipes them out even more. And this is where the biggest victory of our breastfeeding journey lies. I am literally carrying his immune system for him. As his doctors point out, breastmilk is the best broad range antiviral medication there is. My body makes antibodies his cannot make right now, and every time he breastfeeds, he receives a fresh load of them. Maybe I’ve saved him a hospital stay with these antibodies. Maybe, I’ll never know, maybe there’s a chance I’ve even saved his life. What I do know is that every time his doctors see him, they are surprised at the color in his cheeks, the pudge on his thighs, the bounce in his steps as he relearns how to walk, the fits of giggles as he plays peek-a-boo around the hospital room divider curtains.
I hear all the time from people we meet walking the hospital halls how confident and happy he is, even by non-sick two year old’s standards. As he lay there holding my hand, tears in the corners of his eyes last Wednesday, watching his nurse’s face while she pushed the sturdy needle through his skin and into his port, she couldn’t stop exclaiming over how tough and calm he is. I jokingly asked her if she was only trying to make him feel better, and she looked at me over her mask. “You have no idea. Most kids require several nurses to hold them down. In just the last two days, I have been kicked hard in the face twice, and bitten once. He’s a rare one.”
Every time he runs a fever while his counts are crashed, we have to treat it like a symptom of a potential bacterial infection. If we wait to start antibiotics until his blood cultures come back, and they are positive for an infection, it may be too late to keep him from sepsis. Every time he runs a fever while his immunity is critically compromised, he gets admitted for immediate broad-spectrum IV antibiotics. This kills off all bacteria, beneficial or not, except antibiotic resistant bacteria, which then has the opportunity to overgrow quickly. The pediatric hematology/oncology wing has weathered a major C. Difficile outbreak during our stays, due to so many other tiny, incontinent patients dealing with this same issue. We have escaped. After each week-long round of antibiotics, Big has about three days of diarrhea. Then it starts to resolve. Because supplemental probiotics are another source of bacteria, they are not allowed while immunity is crashed. But his pediatrician credits breast milk, with it’s immune boosting, antibacterial, pro- and prebiotic properties, for supporting and helping to recover whatever small colonies of good bacteria remain. Big is soon back up and running, so to speak, with hardly a break in his stride.
Oral chemo while breastfeeding has become the only problem our breastfeeding has created. His oral chemo has to be taken on an empty stomach. An enzyme in milk, xanthine oxidase, binds to the chemo, causing it to pass out of his body without being absorbed. This enzyme is present in high amounts in both cow’s milk and breast milk. A full two hours must pass after eating or nursing before taking oral chemo, and ideally, two more must pass after taking it before he can nurse again. Everyone who doesn’t nurse their child to sleep can feed them dinner, wait two hours, give them their oral chemo, and send them to bed. I have to make sure I don’t fall asleep while nursing him to sleep, set my alarm after he finally falls off my boob satiated and milk-drunk, and two hours later, when it rings, tunnel out of a deep sleep, wake him up and try to shove an oral syringe full of crushed tablets and water between his clamped jaws. And then hope he goes back to sleep without asking to nurse. And make a note of the time, then try not to sleep too deeply, so I can make sure to not allow him to find my breast in the dark and help himself to what is usually a twenty four hour buffet. He doesn’t understand why sometimes I gather him close, guide his searching face and hands to my bare breast in the dark while we drift back to sleep cuddled together, but sometimes all he can find in the dark is the hard curve of my back as I am curled away from him, nursing Little Brother on the other side of me. And no amount of heartbroken pleading and boobless cuddling will allow him what he needs to be able to quickly return to the slumber he was rudely yanked from.
I connected with another mother over our shared breastfeeding experiences one day in the hospital halls, chasing our toddlers with their IV poles as they played together, two little humans who saw nothing strange about the fact they were dragging a plastic tubing “leash” behind them as they played. We saw each other regularly as Big stayed in the hospital for multi-day infusions, while she received the devastating news that after over a year of fighting the beast, only weeks after her beautiful olive-skinned, doe-eyed Baby Girl started two years of “maintenance” chemo, she had relapsed. We saw their world crumble, watched helplessly as they started another induction phase and settled in to weather yet another month-long steroid storm, then lurched to a horrified stop at the edge of their abyss as Baby Girl suddenly succumbed to a silent, undetectable infection at twenty six months old. Sixteen months of chemotherapy, reaching out in the scary dark to find her mother sleeping next to her, never once feeling fear or abandonment as she asked, “Mommy? Boob?” And received the comfort she asked for. Even while she was crashing that horrible night, as her tiny body was shutting down and nobody knew why, she knew nothing but contentment in her mother’s arms, burrowed into her breast, hidden from the misery and the chaos. When Baby Girl gained her angel wings and flew away, it was the first time they had been apart since her conception. Her mother left the hospital, having died with her, to somehow face the future with empty arms, with breasts that had been lactating for the past twenty six months and suddenly had no one to nurse them. As they swelled painfully, what pitiful amount of comfort she could find in the tidal wave of pain and grief, she found in the fact that her sweet girl had known only love and peace at her breast for sixteen months of treatment as she endured so many spinal taps, hundreds of port accesses, countless nights spent in the hospital.
Statistically, breastfeeding could have prevented both of our babies from getting cancer, but it didn’t. Breastfeeding did not keep Baby Girl from an infection like it theoretically could have. But neither of us would do it differently. Both of us are fiercely proud that while our children knew more pain than they should have, it abated somewhat while they relaxed in contented bliss at our breasts. Both of us are so thankful we had this gift to give our children, acutely aware that if things had been different, if we had less support, if we had been forced to wean before our child’s diagnosis, they would have had to face their battles without it.
Big is on the small side for a nearly three year old, but aside from the rapid gain and loss of his steroid weight, his growth and weight gain has followed an almost normal curve. He was moved from a standard risk classification to high risk when he did not quite achieve complete remission after induction, so the following months became more intense than originally planned. As I write, he is sleeping in my arms, a tiny, bald warrior. It is December, and he has been battling since April. He is tired. We all are. We have just started our last month of high-dose chemo. By the end of January, his immunity should be high enough we can do cautious play dates again, go to restaurants, maybe go swimming at the rec center. Little Brother is a fat, happy eight month old who smiled his first smile in a post-op recovery room, learned to crawl on a hospital floor, first pulled himself to standing on an IV pole, hit his head on the base of the same IV pole the one time he fell out of bed in the hospital, when I was too distracted holding Big as he vomited to catch Little as he rolled onto the floor.
I didn’t make the decision to keep nursing through the obstacles, then reap the benefits of being able to continue it for my toddler through the worst year of our lives. I simply never made the decision to not try to honor his asking for the thing he needed most. And so we ride it out, this crazy roller coaster that involves a whole lot of baring my boobs to strangers in waiting rooms, tandem nursing on exam tables and emergency room cots, and hearing amazing stories of nursing through impossible odds from other mothers on parallel journeys. Our nurses compliment my commitment. Honestly, parenting through a pediatric cancer diagnosis seems easy compared what so many of our nurses do- coming in to work a breakneck 12 hour nursing shift with barely any time to pump, and still managing, for the most part, to breastfeed for six to twelve months.
Everywhere I look, parents with shattered hearts are using their own bodies to provide comfort to children facing impossible situations. Behind sliding glass doors, small islands of calm in the chaotic hospital machine, they hold their children as tubes sprout from their bodies, comb their fingers through silken curls as they fall out in their hands, try to hold them closely enough to calm their shaking as fevers rage and toxic substances pour into small bodies. Breastfeeding isn’t required to give a toddler the strength to fight adult-sized battles, but it is the weapon my own toddler most often pulls from his quiver.
It isn’t what I pictured parenthood being like, although it was perfection for two years. I watched snowflakes clinging to his eyelashes when we went sledding, saw his little towhead bobbing through tall wildflowers, his tiny, naked body running and splashing into a cold mountain lake, squealing with glee. I hold each of these moments in my memory, savoring them one by one when I need to feel normal. But our daily life is filled with awe at the strength of him. He came from me, but I don’t know how he got so wise. Every day we spend together is a beautiful day. Someday, these moments he spends melted over my lap, nursing, by turns holding hands with and trying to push away his baby brother nursing from my other breast, these moments will end. The intensity is temporary. Someday, when my arms are empty, when he is grown, I will wonder why I secretly long for our breastfeeding days, our cancer days, fighting an epic battle side by side with him while wearing a milk-soaked shirt.
[You can follow Big on his journey here: http://www.littledanielsbigadventure.blogspot.com/]