My Baby's Silent Reflux Almost Broke Me
The night Blaise was born, he screamed. As new parents we did everything we could think of to make him stop. We swaddled. We used the pacifier. We gave him the breast. Then we took the breast away. We laid him naked on my chest. We burped him. And nothing happened. We were in a cold hospital room with one bed, one sofa, and one chair; we didn't have any of the comforts of home and weren't prepared for any of this. We had no idea what to do with this screaming creature, other than some vague idea that it must be our fault, or at least our fault we couldn't stop it. Finally, we buzzed the nurses.
“Our baby won’t stop screaming,” I said in a postpartum, three-day birth haze. “Is there anything we can, like, give him?” The nurse suggested that we could give Blaise gas drops. “Do you have any?” my husband asked eagerly. “No,” she said, and she left the room, leaving us behind feeling like hippies who were clueless on newborn infant care. Little did we know there was a good reason he was screaming: our baby had a silent reflux, and was in constant pain as soon as he started to eat. All his food was coming up. We didn't know this was even possible in a baby. We didn't know anything.
Blaise cried for about four hours that night. And the night after that. And the night after that. I started crying along with him. Maybe, I thought, this baby thing was a mistake. We were certainly failing at it. But finally, we discovered that if my husband held the baby with his head in his hands, his body draped over his arm like a little panther, and bounced him, Blaise would stop crying — as long as both the position and bouncing were maintained. As a result, my husband began to develop an impressive left arm. He sat on an exercise ball and read movie reviews for hours every night, waking me only to breastfeed. Finally, once he fell asleep, he'd gingerly lay Blaise in the co-sleeper.
Our breastfeeding sessions ended in tears for both of us. Blaise screamed. I wept.
Blaise also screamed through his breastfeeding sessions. He would breastfeed happily for a few minutes and then, at some strange signal, arch his back, pull off my nipple, and scream. He could be coaxed back to the breast, but he'd suck, suck, suck, suck, and then scream again. I began to count the sucks between the screaming. three was bad; 15, a miracle. I found he could be more easily brought back to the breast if I switched nipples. So breastfeeding meant sitting shirtless to the waist, clad only in a pillow around my waist, breastfeeding on one breast, screaming, breastfeeding him on the other breast, screaming, and then switching again. Our breastfeeding sessions ended in tears for both of us. Blaise screamed. I wept. “I’m just hurting him,” I cried to my husband. “Maybe we should just go to formula.” But my husband believed breast milk was best for our baby, and it would help whatever was wrong with Blaise. Plus, we both really wanted to be successful at breastfeeding for our son. But it was hard not to be discouraged. And so the broken, hellish breastfeeding continued.
I hated it. I loved breastfeeding, when it worked, and just wanted a baby who cuddled against me and sucked, not this scrawny creature who screamed and screamed. I felt like it had to be my fault somehow, this screaming, maybe the fault of my milk. This wasn't what having a baby was supposed to be like. I felt let down, put out, ashamed. I couldn't take care of my own child, not like everyone else seemed to.
Babies with colic often cry for more than three hours a day, three days a week. But Blaise cried for more than that.
At his two-week appointment, he wasn’t gaining enough weight. A less hippie pediatrician would have called him failure to thrive, which meant our baby wasn't meeting expected growth standards, with the red cradle cap rash scaling over his head and down his face, but our doctor said Blaise had colic. My heart sank. A colicky baby: my worst nightmare. I'd prayed for anything but a colicky baby. Colic is "marked by predictable periods of significant distress in an otherwise healthy, well-fed baby," according to the Mayo Clinic. Babies with colic often cry for more than three hours a day, three days a week. But Blaise cried for more than that.
He had a horrible, painful, near-ulcerous case of baby heartburn that flared every single time he ate. My baby was in pain. He screamed when he breastfed because acid was splashing into his guts.
But as I thought about it, I reasoned that babies cried for a reason, and because of that, colic didn't seem like an answer for us. Blaise was a terror during breastfeeding, and it was clear to see that my son was in pain. He wasn’t an unhappy baby. When he wasn’t crying, he was a genial little guy my friends called the "perfect starter baby." We were attachment parents, and thought no child would just cry the way Blaise did. So I started Googling. I searched. I read message boards. And I found a site called Reflux Rebels. After reading the site and seeming symptoms similar to my own, I discovered my son had silent reflux.
According to Reflux Rebels, a silent reflux meant the valve between my son’s stomach and esophagus was immature, I read online, and the doctor later confirmed this. Milk mixed with acid in his body and splashed up through it — not high enough to come up and cause spit-up, but high enough to erode the mucus membrane of his esophagus. He had a horrible, painful, near-ulcerous case of baby heartburn that flared every single time he ate. My baby was in pain. He screamed when he breastfed because acid was splashing into his guts.
We took him to the pediatrician. I armed myself with information printed from the internet. This time, we barely escaped a failure-to-thrive diagnosis. Our pediatrician watched him breastfeed, and said he did indeed have silent reflux. She offered Zantac, and said, shrugging, “You could pump and thicken his feeds with rice cereal.”
But I didn't want to formula feed. I was determined to breastfeed my baby directly from my breasts. At the same time, I started a no-milk, no-soy diet since he seemed to be intolerant to milk and soy proteins in my breast milk. The Zantac didn’t work, so we went back. The doctor prescribed Reglan and we tried it, but poor Blaise didn’t want to be touched. He seemed peevish and miserable. After just one day, I knew I was never giving my baby this drug again. So the doc prescribed Bethanecol. An hour after the dose, Blaise was still screaming uncontrollably, and we ended up in the ER with an allergic reaction.
Finally, she listened to me — and to the recommendations on Reflux Rebels. They recommended prescribing him Prevacid, which I demanded from the pharmacy without anything but plain vanilla flavoring. I dosed it according the internet instructions: to their strength, and to their timing, one-and-half hours after a meal, and half hour of an hour before. After realizing how little doctors knew about infant reflux, I felt fine dosing more than the doctor had prescribed. Reflux Rebels, and MARCI-Kids (Midweastern Acid Reflux Center Illinois) seemed to be the only people who had seriously studied infant reflux.
Reflux was hellish. It was hellish on Blaise, and hellish on us, especially as new parents trying to navigate this new stage in our lives.
The Prevacid, along with the milk- and soy-free diet, finally worked. Blaise’s esophagus started to heal, he stopped crying, and he started gaining weight like a normal baby, though he was always small (and still is, even at 6 years old). We were able to discontinue the Prevacid at 18 months — and that remained constant for all three of our sons, all of whom were afflicted with reflux.
Luckily, with August and Sunny, we knew what to do. We waited two weeks before asking for Prevacid for August. With Sunny, we waited three days. Neither one went through the medication round-robin, or the month of pain, that poor Blaise had to endure. Reflux was hellish. It was hellish on Blaise, and hellish on us, especially as new parents trying to navigate this new stage in our lives. We all shed tears at some point. But I’m grateful we finally found something to work. While reflux was hell, the Prevacid was heaven.