The Boy Who Couldn't Eat.
Read Amy's heart wrenching story.
When I was first asked to be June’s postpartum covergirl, I immediately thought, but Malachi will be two years old, that doesn’t count as postpartum! But then I realized that the last two years of my life have been one extended postpartum infancy period. When you think of early postpartum, you think of the haze of absolutely no sleep, the dreamy bliss of loving this new creature with all your heart, the anxieties of feeding...are they latching? Are they eating enough? Are they gaining? Why are they crying? Am I eating something that makes them gassy? You think of the hours of bouncing them on a ball, of the little baby that won’t sleep unless you are holding them, so fresh from the womb. You think of the million times you call the doctor or ask google “What’s wrong?” “Is this normal?” And then...so I’ve heard, things start to click into place. Feeding becomes natural, sleep gets better, you find your rhythm, and you emerge from that place of both total devotion and total overwhelm.
I never got to emerge.
Because of my son’s medical conditions of severe GERD (Gastro Esophageal Reflux Disease) and FPE (Food Protein Enteropathy), we have spent the last two years in a state of perpetual newborn postpartum haze, with all of the fear, anxiety, and lack of sleep but also intense love and single focused devotion that entails.
But let me back up, I’m getting ahead of myself...let’s start from the beginning…
I have always known that I wanted to be a mother. I think part of that comes from the grace and joy of my own mother. She has always told me what a joy it was to have me, the bliss of nursing a newborn, of co-sleeping effortlessly, of lazy naps together on hot afternoons, of going out to eat and sitting quietly together at restaurants, her eating something delicious while I nursed calmly and happily. Since I was ten years old, I couldn’t wait to do the same. I became a doula, a midwifery student, and a lactation educator to be around birth and moms and babies as much as I could. Motherhood and everything around it was my passion and my calling.
When my husband and I got married, we planned to wait 2-3 years before getting pregnant so we could get some time being married just the two of us. However, when we found out that we got accidentally pregnant on the FIRST night of our honeymoon (who does that anymore??) we were secretly thrilled. Our honeymoon was supposed to be a year trip around the world that we had been planning for ages, and instead we headed home and I spent the first three months of our honeymoon going “around the world” in our home...from bed, to couch, to toilet to puke, and back again. The morning sickness, or 24 hour sickness, was horrific.
But then the second trimester arrived, and with it health and happiness. I loved the rest of my pregnancy...eating healthy food, singing to my baby, planning my home birth. I rolled in dirt, played with cows, took all my probiotics, made sure I wouldn’t have to take any antibiotics in pregnancy or labor, and that my baby would be born at home, not bathed, and only fed breast milk. After all the research I had done and learned, I was going to give my baby the perfect microbiome and avoid all these crazy issues kids have these days like digestive issues, food allergies, hay fever, etc. I was under the illusion that if I took all of these steps and had the perfect, healthy, pregnancy and birth, my baby would be perfectly healthy too.
And everything went exactly according to plan. My group B strep test came back negative, no need for antibiotics! My home waterbirth was beautiful, smooth, and empowering. Malachi emerged strong and crying, and crawled himself up my belly and latched to my breast strongly and quickly, with no help from me. My milk came in immediately, he was drenched in colostrum and milk within the first few hours. And I was in heaven. I fell in love with this little creature so hard and so fast that I became a new person. Never before had I felt so in my element, so calm, so peaceful, and so blissed out. My husband calls the first few months that I had Malachi my “Zen Amy phase.” Nothing got to me, not poop all over me or lack of sleep, not Malachi crying, not tongue ties or cracked and bleeding nipples. Everything was perfect, and everything was as it should be.
Looking back, there were many indicators during those first few months that Malachi was already experiencing the beginnings of his health issues, but two things stopped me from seeing it. One was my totally blissed out state of “everything is perfect” and the other was that I was given what I like to call a “stoic” child. We encourage all emotions in our house, and yet from birth he rarely cried, and always tried to be happy. He rarely cries when he is in pain. Just yesterday, he burned his hand on the cast iron pan and made a face like he was going to cry a few times, and then stopped even as I held him and said “its ok to cry baby, that must really hurt.” Something inside him works really hard to be strong and make the best of every situation, and he was born that way. I know now that he was in excruciating reflux pain from very early on, that the “crazy backbends” that he would do as an infant that made us all laugh were actually Sandifer’s Syndrome, which is a type of seizure from extreme GERD pain. Most babies scream while it happens, Malachi would try to smile. It breaks my heart that it took me so long to figure out that he was suffering, and that I wasn’t able to help him sooner.
Our first indication that something was really wrong was at about two months of age. He started to resist feeding. He stopped wanting to nurse or take a bottle. Before that, he had looooved nursing, cooing and smiling at my breasts. Now he would look at them excitedly, start to nurse, and then something would happen and he stop. He didn’t cry, simply arched away from breast or bottle or turned his head to the side. We were told that it was likely because he had had his tongue tie clipped a few weeks before, and he was developing an oral aversion and that with the exercises we were doing it would resolve shortly. No baby will starve themselves, they said.
They were wrong.
Malachi stopped taking anything by mouth at all. He would cry out and root in hunger, and then react in terror as soon as he saw breast or bottle. My heart broke over and over again trying to nurse him. I tried so hard not to feel rejected, but that feeling was mixed in there somewhere too. There is some deep and divine instinct in mothers (at least the lineage of Jewish mothers I come from) to feed their children. At any age, in any way, breast, bottle, or pasta, we want our children to eat and thrive. Failing to be able to do that made me feel utterly desperate.
The only way I could get him to eat was to nurse him once he was dead asleep. Finally, once he was asleep, he would gently latch and calmly nurse and snuggle, my tears falling over him each time in relief and also tears of longing that we could experience this beautiful bond when he was conscious and awake. For around 5 months, he had no idea he even ate. Which meant he was starving ALL the time when he was awake. I don’t know if you’ve ever tried to get a starving baby to sleep….but it is nearly impossible. We were in a catch 22, our baby couldn’t eat unless he was asleep, but getting a baby to sleep who hasn’t eaten in hours and hours is insanity.
Sleep completely fell apart. I started setting alarms for every 45 minutes at night so that I could “dream feed” him in his sleep and get him enough calories to keep growing. My husband could never leave the house. The only way we got through the day was having my husband or my dad wear Malachi in a wrap every hour and a half and bounce and bounce and bounce him on a mini trampoline while blasting Family Feud on the television (I swear Malachi thinks Steve Harvey is his third parent) until he fell asleep and then transfer him to me to nurse once he was asleep. That transfer required the finesse and skill of a surgeon, and when we failed and he roused in the process, he would refuse the breast and start screaming in hunger, and the process would start again, but harder. We tried every bottle, we syringe fed milk into the back of his throat while distracting him with the television to force him to eat, and still he managed to spit it out. We tried formula, donor milk, and hypoallergenic formula, wondering if he didn’t like the taste of my milk. I cut out gluten, dairy, and soy from my diet to see if he was reacting. Nothing. We had the boy who would not eat, and therefore could hardly sleep, and our lives revolved around it.
During those 5 months, we broke three trampolines. They are meant to last 10-15 years.
Meanwhile, we were going to doctors, specialists, naturopaths, lactation consultants, homeopaths, you name it. At this point, I became absolutely certain that he was in pain, that nursing was causing him pain. I had grown to know his small signs of discomfort, and my mama instincts told me he was hurting. But nobody believed me...because he was such a stoic baby. Finally, at about 5 months old, I gave him some infant advil just to see what would happen. Forty five minutes later, for the first time in months, he nursed while he was awake and smiled at me while he did it. That was the moment when I realized that I had to stop relying on doctors or anyone else to heal my baby, that I had to be the expert and the healer. I looked him in the eyes and I promised him that I would not stop until I figured out what was wrong and what to do about it.
I went down the rabbit hole of google scholar, facebook groups, and online forums. I became obsessed. I stopped spending time with my husband, spending every free moment I had doing research. I finally found a random reference in a mothering forum about a baby who only nursed in his sleep, and that it turned out to have been severe silent reflux. REFLUX? I thought, but don’t babies with reflux spit up a lot? Malachi never had. I quickly absorbed all of the information on the web about reflux, and learned that no, silent refluxers sometimes NEVER spit up, they just have constant horrific heartburn and often esophagitis from the acid. I learned about Sandifer’s, and reflux aversions, and his constant hiccups and weird glerky sounds that he made. This was IT!
I called our pediatrician and told her she had to prescribe us some prilosec at the highest dose she could. I gave it to him, and after his second dose, he started nursing awake and happily! My husband and I cried and cried with relief. We thought it was over. For one week, everything was as it should be. He nursed all day, nursing himself to sleep for naps, sleeping well at night, and my husband and I saw the light at the end of the tunnel. This is what parenting could be like! No more hours of bouncing, no more 45 minute alarms every night to feed our child! One week later, out of nowhere, everything went back to the way it was. We were still giving him the medication, but he started refusing to nurse again, started to arch again. We were devastated. The trampoline was pulled out of the closet.
Our ped was at a loss, so we were transferred to UCSF GI, and their first appointment was 2 months away. I wasn’t about to wait that long to get my baby out of pain, plus I had little trust that they would know what to do anyway. I went back down the research rabbit hole. It consumed me. I had notebooks full of every standard and woowoo treatment for GERD that anyone had ever tried. My marriage began to crack...it had been almost 6 months now of no sleep, constant bouncing, our grief watching and knowing that our son was in pain every day and that we couldn’t do anything, and my own obsessive research as a coping mechanism against that grief. I was completely neglecting my relationship.
Meanwhile, these months had been the happiest days of our lives. That sounds completely crazy after all of the horrible things I have just explained, but I’m not even remotely joking. Every single day was the most painful and hardest thing I had been through, and also the most joyful. Malachi was a joy. He is an incredible child, and we fell in love with him more and more every day. When we weren’t desperately trying to get him to eat or sleep, we took long walks, stared at flowers and blades of grass in wonder, laughed uproariously at tearing newspapers or daddy’s sneezes. His smiles and giggles and his sense of wonder transformed us. He was truly an “easy” child in every way but his pain. We started every morning putting on a record and dancing around the living room together until we collapsed on the floor in giggles. Motherhood was all of the wonder and love and joy that I had ever fantasized about. It was just that in our case, it also came with so much pain. I became the best version of myself, selfless, responsible, prompt, and endlessly optimistic, all for Malachi. I refused to let his health condition affect his emotional experience of the rest of his life, so I constantly looked for ways to bring us joy. I was more fulfilled and purposeful than I had ever been in my life.
I also cannot tell my story without mentioning that I would not have survived without help. ALL kinds of help. My parents and Jace’s parents both supported us in every way, doing bounces, bringing us food, and playing with Malachi nonstop and becoming his favorite people in the world. Still, our saving grace was the decision to hire help. Even with both of us home, we were at each other’s throats from exhaustion, and I was nearing insanity only sleeping in 45 minute chunks at night. So we decided to hire a mother’s helper to come every morning for a few hours to play with Malachi and do his first bounce nap so that Jace and I could go back to sleep and get three solid hours of sleep before heading into the rest of our day. Jen is still here with us and she is now an integral part of our family. I first felt shame that I had had to hire help, even being home with Malachi all the time. But now I want to shout it from the rooftops. Hiring a mother’s helper allowed me to be the loving and present mother that I knew I could be if I got a little sleep.
In the midst of all of my research, I happened upon a facebook support group called Infant Reflux: Support for Gerdlings. I was in a ton of facebook support groups for reflux moms, but this one was different. They wouldn’t even let me post until I had read pretty much their entire website, infantreflux.org. It blew my mind. I found out about “proper” dosing of Malachi’s medication (3x higher than peds prescribe, I had to go rogue and home compound), and I also found out that babies can react to more food in your diet than just gluten dairy or soy. I found out that many moms have to go on TED or a “total elimination diet” in order to figure out what their baby is reacting to that is causing the GERD.
Those two things: propers dosing and TED, together, were our salvation. It actually took quite a few months longer for us to get his pain fully under control, but eventually we did. I owe everything to those tireless mamas at infantreflux.org who coach mama after mama through this process. If you are reading this, thank you. I started with a six food TED, only to later find out that zucchini and pears were two of his biggest triggers and they are often suggested as part of your first TED! Finally, after two frustrating months of playing around with different TEDs, we found success eating just white rice, white sweet potato, and olive oil for 2 weeks. Slowly, we added foods over time. Most were fails, causing his symptoms to reappear and his nursing aversion to come back. But now we have 11 safe foods. Malachi and I have been only eating these foods for a year and a half now. So many moms tell me I’m amazing, that they could never eat so few foods for so long. I don’t believe them, because I used to think the same thing. I used to think cutting out cheese alone would be too hard. I know they would if they had to for their baby, we all would.
We found out later from an endoscopy at UCSF that he has something called Food Protein Enteropathy which is the root cause of all of these issues. It is similar to celiac disease except that he reacts to the proteins in almost ALL FOOD, not just gluten. I basically have the boy who is allergic to food. It is usually outgrown between 3 and 5 years of age (knock on so so so much wood).
Being on a TED wasn’t as hard as I thought. Yes there were the days when I gagged every time I took a bite, forcing myself to eat the same food just to fuel myself and make more milk, yes I’m skinny and depleted. But it was more doable than I imagined, and you would be surprised at how creative you can get with so few ingredients. One of the hardest parts was that it is just another thing that challenged my marriage. My husband and I are both foodies and we love to go out to eat. It is what we do for date nights and a big part of what we bonded over. It is also one of my favorite indulgences and pleasures when life is hard. And life has been hard, and we haven’t had that.
But it has been worth, I can’t even begin to tell you. The heartbreak that I felt day after day after day as my child cried from hunger and then rejected the breast in fear and pain was replaced by the most incredible nursing bond. I like to say that I started nursing Malachi when he was about one year old, because that was when he started nursing excitedly and awake, nurse for comfort, nurse when he bumped his head, and nurse when he was sleepy or scared. His gleeful shouts for “numma numma” filled the house as they do to this day. Every day nursing him like this is a gift. I truly believed that we would never have this nursing bond and relationship. I believed that even once we had gotten his pain under control, that the many months of pain and fear from nursing would have damaged his ability to ever find it a comfort or a joy. I grieved that constantly, as it was one of my deepest longings. But I can happily say that he is now as “numma numma” obsessed as any of the other toddlers around us. While he nurses, he will wrap his arms around me and smile up at me, saying “hug, I lah you, Machi’s mama.” Many of my friends get exasperated with their toddlers and how much they want to nurse. Because of our first year, I don’t take a single nursing session for granted.
From year one to year two, things got better and worse in fits and starts. He still nursed ALL night long, still had many periods of severe food reactions and mysterious reactions to who knows what that drove my husband and I near mad, and still needed to be bounced a trampoline for all of his naps. But he was happy, and he was eating and growing. I was able to stop obsessing, and reconnect with my husband. There were definitely times during that first year that both of us were not sure that our marriage was going to last, but coming through an ordeal like that together and making it out the other side has made us stronger and more connected than we have ever been in our lives. I can’t imagine getting through that without him and I’m more grateful and in love with him than I ever was before.
I started getting to just focus on how incredible of a human being Malachi is...watching his mind grow and develop, watching him turn into this thoughtful, quiet, inquisitive, deliberate, hard working, empathetic, and considerate little boy. He astounds me daily. When I’m crying while we watch Moana, he puts his hand on my back and says, “Mama sad, hug.” His tiny engineering mind allows him to take things apart and put them back together in ways that at 30 years old I cannot figure out how to do. He wants to help with everything, and calls himself a “working man.” He’d rather do chores together like feed the fish or tend to the vegetable garden than play with his toys.
And now, around the two year mark, it really feel like things are shifting for good. I’m sleeping in 4-6 hour chunks at night, he lays down for most naps (I miss the snuggles of the bounce naps and still do them occasionally!), and he’s eating and gaining well. We’ve even been able to slowly start to reduce his medication. He’s not in pain on the regular, and we can all breathe. My biggest struggle now is processing all of the trauma that we went through, and finding a way to come to terms with the guilt. Some part of me believes I could have prevented this, or that I caused it. Was it the two weeks that I didn’t know I was pregnant and wasn’t taking prenatals? Was it the antibiotics I took in my twenties? If I had started a TED when he was an infant would it have resolved quickly? What could I have done differently, how could I have prevented this? I know it is just my mind trying to control the uncontrollable, but it haunts me daily.
And the biggest question….If we have another child, will it happen again? They don’t know what causes FPE, but it does tend to run in siblings. In our ideal plan, I would already be pregnant again, but now we aren’t sure if Malachi will ever have a sibling. Right now I know we aren’t ready, and I’m absolutely terrified to go through anything like this again. I go in and out of grief over the possibility of never having another child.
And then I look at Malachi, giggling with his dad as I write this, and he looks up at me and smiles that big smile with dimples for days and says “Mama!” and gets back to work (building something of course), and I know that whether or not we ever have another child, my family is absolutely perfect, and absolutely complete. And that whatever comes to challenge us, whether it be in Malachi’s future or having another baby with FPE or something else, my husband and I can handle it. We are warrior parents, and we can conquer anything for our family.
All images by Tifani Beecher Photography.