Infant Silent Reflux is NOT Silent – Our Search For An Answer To Our Baby’s Cries

Infant Silent Reflux is NOT Silent - Our Search For An Answer To Our Baby's Cries | thisgratefulmama.com

I think it’s time to do a little series on our experiences with infant and toddler reflux (GERD).

I’ve been shocked over the past few years by the number of people who have asked questions about our experience with our son and daughter. I rarely go more than a month without reflux coming up in a conversation, email, or phone call – because a beloved child is hurting.

These friends, family and acquaintances want answers. They need someone to validate their intuition that something just isn’t right. They want hope – someone to tell them that a doctor was able to help our child and will be able help theirs. They want to know what questions to ask.  Sometimes after we talk, the conclusion is that their child’s symptoms do not sound like reflux, but all-too-often, what is described sounds like reflux.

Regardless of the situation, I always point them towards going to their doctor. I am not a doctor. I can only share our experience and encourage you to get help for your child if you think something is wrong. Please check with a medical professional to confirm whatever you suspect.

When I started this blog, I thought reflux would be one of the first topics I’d write about. But in truth, I’ve held back on posting about our experience.

Why?

It’s complicated. It is painful to recall those moments when we could do nothing to console our hurting child. And because there is SO much information about our experience, it is hard to organize my thoughts. Oh, and it is hard to remember details out of the haze that was one year of severe sleep-deprivation.

But, most of all, I paused because I want to be sure what I write honors our son. Sometimes when I share with other parents, they tell me how sorry they are that he was a ‘difficult’ baby. But it wasn’t HIM that was difficult. What was difficult was that he HURT.

Sure, it was a hard first year for all of us. And he did cry. A lot…all night long, night after night.  But he was a beautiful, sweet baby boy. He just hurt. A hurting baby can’t help themselves so they express their pain through tears. Silent reflux is a terrible and painful thing. His whole body told a story of pain as it tensed, writhed, and screamed until his voice rattled and he had no air and was gasping for it.

But he was our baby, our son, an immense joy and blessing. He smiled, giggled, and talked – melting our hearts. It was just that those moments were less frequent and all-too-brief because they happened between bouts of pain. But those special moments were no less profound or fulfilling, and are cherished.

Let me be clear: This article is not a complaint about that first year. This is how life was for our family. I write this to share with other parents whose children also hurting.  Sharing our experience has two purposes: to help hurting children, and to give encouragement to their parents. It takes a village…

If you are reading this because your child is hurting, I hope this points you in the right direction. If this helps just ONE family, it has achieved its purpose. I hope this encourages you – whether your child has symptoms of reflux or another source of pain, know we understand what it means to care for a hurting child. I’m glad you’re here. Looking for answers is a great place to start helping your child.

Today’s post is our story of searching for an answer. Many of you have a similar story, only after diagnosis and starting medication, it will be the end of your story. The medication will reduce acid and help your child’s muscles heal and tighten. Your story will be short – I hope and pray it is! Our story did not end there. I will tell that part of our story at a later date, but sharing how we go to the point of identifying the problem will help the most people, so I’m starting here.

Our story:

We named our son Aiden. We loved that Aiden means “little fire”.  Never in our wildest dreams did we think he’d be born with a fire of acid in his belly that would cause him pain.

He screamed all night long, inconsolably, from the first night in the hospital, through most of the next 10 months. In the first weeks, it was my mom who observed that even when sleeping, he was never relaxed; his fists clenched, his back arched, and crying out in his sleep. Although he certainly had moments of calm, especially in the early morning when he hadn’t eaten yet, they were short and infrequent. And the older he got, the worse it got.

As a first time mom, I knew babies cried. But what did I know? Who was I to say that our child cried too much? It felt like it was saying he wasn’t good, or wasn’t normal, or that I wasn’t equipped to be his mom. At his one and two week appointments, I told his doctor I was concerned about how much he cried. But I was unsure of myself and my assessment – especially when my son was bafflingly calm EVERY time we entered the clinic. So weird! I didn’t go into detail, and didn’t really explain that he cried ALL night long, or that feedings were a disaster. I figured I was doing something wrong nursing him and that like all the moms told me…at some point soon, ‘it would click’.

Since Aiden was growing (99% on the growth chart the first 6 months), the doctor wasn’t concerned with how much he cried. He explained to me that some babies cry, a lot. Perhaps it was colic. He told me colic often has no explanation and goes away on its own after peaking at 6 weeks. I felt like he was telling me I was over-reacting. I doubted myself and didn’t press the issue.

But in reality, it was an understatement to say that we were concerned. Something did not seem right and I couldn’t accept there might not be an answer.

Night after night, at 3 am, as our child screamed in my arms, I cried with him. I prayed for help, for sleep, for healing, for silence. I was his mother, helpless to soothe him, even with nursing. During the day, he wanted to nurse endlessly; he would have nursed for 10 months straight if that was possible for either of us. I learned later that he was self-medicating; soothing his throat from burning. At night, nursing was different. Frantic. He would be desperate to eat, only to push away and scream, writhing in pain. It was awful for him. And for me. Most night nursing sessions took hours. My poor husband would find us both crying in an actual puddle. He would graciously and lovingly scoop him out of my arms and take a shift pacing the house.

The nights were LONG.

No amount of walking, rocking, singing, shushing, dancing, swaying, swinging, swaddling, or standing still made a difference. The only thing that seemed to give him pause was what I’d call the deep squat. UP, down, UP, down, UP, down…I did more squats after giving birth than I have my entire life. And so did my husband. Squats would soothe him for a while as he’d look at us, wide-eyed…but as our legs, and back and arms gave out, so did the silence.

Not a really viable solution – you can only do so many squats.

I researched all kinds of causes of colic. I remembered a co-worker mentioning their child had acid mild reflux and required medication. I had never had heartburn, so it was hard for me to understand how it could be this painful. And, he never spit up – ever! But I remembered stories of adults with heartburn thinking they were having a heart attack and spending the night in the ER. When I first experienced heartburn during my second pregnancy, I realized just how awful my son felt for that entire year. It broke my heart all over again.

I researched colic, hoping to find a reason for his cries, and was often pointed towards infant reflux. But almost all references to infant reflux symptoms at that time noted that babies with reflux refused to eat and lost weight, causing failure to thrive. Our son didn’t spit up. At the time, I didn’t understand that at night as we struggled with nursing, he was refusing to eat.

Information on silent reflux wasn’t really out there – or at least, I couldn’t find it.

Finally, I found one mom’s account of her son. Their story echoed our own (I wish I could find it to thank her!). Her son, like ours, was not failing to thrive, and was also bafflingly calm in the clinic. After refusing to accept his symptoms were colic and could not be explained, she took him to other doctors and found someone who agreed with her. They diagnosed him with silent reflux. I had never heard of it.

Silent reflux is when your child has acid reflux but never spits up. Acid comes up from the stomach because the sphincter muscle at the top isn’t strong enough to close tightly. But what makes it ‘silent’ is that instead of spitting it up, they swallow it. It burns coming up and going back down. A lot. A baby should be content after they eat, but with silent reflux, it brings pain. They arch their back, throw their heads back and clench their fists – without relief. Some babies refuse to eat while others want to nurse slowly all day long.

Let’s get something straight before describing how you can identify reflux that is painful: All babies have reflux to some degree. Your child may have gurgly burps or spit up a lot but this doesn’t mean you need to be concerned. What matters is whether it hurts them.

Although most literature says a baby can’t have acid reflux right away because they don’t have stomach acid yet, our son’s symptoms were the same on day 1 as at 7 weeks, only at 7 weeks they were worse. Much worse.

Our sons’ symptoms of painful silent reflux included:

  • excessive crying that was worse at night. A whole body cry – red in the face, voice rattling, gasping for air
  • basically never slept or slept for only 40 minutes of fitful sleep at a time (there will be a separate post dedicated to our experience with reflux baby sleep)
  • would cry out in pain during sleep, especially after eating
  • repeated hiccups – not just a nuisance, they were obviously painful and would last forever. My daughter had hiccups too, but not like these. They were vicious
  • audible gurgling in his throat, followed often by red-faced coughing fits or sound of clearing his throat
  • body always tense, fists clenched
  • not content after eating, often with back arched and screaming in pain
  • during the day, wanted to nurse constantly (self-soothing) but never seemed satisfied
  • at night, frantic to nurse, only to pull back in pain and scream, then be frantic to nurse again (frantic to eat to eat, starting to eat, refusing to eat, repeat). This is the ONE repeated symptom that I’ve heard the most from other parents
  • diapers were not normal – runny, greenish, acidic (we did not know this at the time – we had no idea what a normal newborn diaper looked like until my daughter was born)

That mom’s story gave me the motivation to keep hunting for an answer. Her words gave us confidence to demand a response from the doctor and to describe, in detail, EVERYTHING that was happening. It took countless phone calls to nurses and lactation specialists, doctor visits, and finally nursing him in the clinic with a lactation specialist to diagnose him. It took the lactation specialist less than 5 minutes to figure out what was going on after our son finished eating and began writhing in pain (if you think your child has reflux and have trouble getting someone to agree, I’d reach out to the lactation specialist at your pediatrician’s office).

They diagnosed him with silent reflux at 7 weeks.

The pain had a name that made no sense – Infant Silent Reflux is NOT silent.

Read more about our experience navigating reflux treatmentmy personal experience nursing and caring for our son during his first year. and look for future posts that will describe our experiences with toddler reflux and reflux sleep (or lack-of). If you found this story to be like yours – don’t hesitate to get your child help. If you need more information sooner than the next post, email me (thisgratefulmama[at]gmail.com). I’m happy to share anything I know and help in any way I can.

Infant 'Silent' Reflux Is NOT Silent - Our Search For An Answer To Our Baby's Cries | thisgratefulmama.com

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36 thoughts on “Infant Silent Reflux is NOT Silent – Our Search For An Answer To Our Baby’s Cries

  1. Pingback: Infant Silent Reflux is NOT Silent – Our Experience Navigating Reflux Treatment | this grateful mama

  2. Thanks for sharing your story. I have two boys now 2.5 and 3.5 who weren’t diagnosed until my eldest was 2. They both ended up having to have the fundoplication surgery (amongst 14 other operations) and suffered extensive damage from silent reflux. I now volunteer for RISA (Reflux Infant Support Assoc) and I’m fiercely passionate about raising awareness.
    All the very best to you and your fanily

    • Thank you for sharing. I am sorry it took so long to get help for your boys and for all the struggles you’ve had. I am also passionate about awareness and think it is key to get help early and education and awareness is so important so parents know reflux in babies even exists, let alone what it looks like! Our son’s reflux came back at 2 with fury although I’m not sure it really ever went away as he always had some symptoms. I’ll have to learn more about RISA, seems like a great organization! Best to you and your family as well.

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  4. Thank you for sharing your story. When you posted this in February 2015, we were in the darkest days of our reflux journey; I wish we had seen this then. Thanks for your encouragement to other families, and for sharing in a way which we can use to help those closest to our families understand a little bit of how life is during this time.

    • You are welcome. I know how difficult the journey can be. I can tell you that you will be stronger for having gone through it all with your child and you will be WELL equipped to help others by sharing your experience. You will know a reflux child when you see them – reach out and encourage the next mama 🙂

  5. Thank you for sharing your story – it was as if I’d written it! We’ve had (and continue to have) the same situation with our son Noah, and had one hell of a battle to get him diagnosed with silent reflux as he, like your son, was putting on the weight and a big comfort eater. 8 months later and we’re still battling, but it has gotten easier to some extent. I’m so fed up with people saying “oh it’s ‘just’ reflux,” and thinking all he does is spit up and I’m making a mountain out of a molehill. Only those who have had reflux babies truly get “it,” and I thank you for sharing your experiences so that people can begin to understand what these poor bubs go through.

    • You are welcome. We struggled to communicate well to others what we were really dealing with too. Writing was healing for me and I had many come back and tell me they had no idea. Keep explaining and being honest with others – most of the confusion is over misunderstanding what reflux IS. Praying for your little one and for you as parents. It DOES get better, hang in there!

  6. You have described our own experience. In the beginning I was told by my GP that ‘all babies cry dear’. And I remember thinking ‘not like this one they don’t. At three months I was finally able to prise her fists apart to wash in between her tiny hands and fingers… before that I had to try and push an ear bud through to clean them as she was in so much pain. I AM complaining about that first year. It was horrendous for all of us and I am heartbroken that it took over a year before my daughter was able to giggle and belly laugh because she was no longer in pain. A lot of GPs see silent reflux as a middle class ‘white woman’s’ malady. As the head practitioner at my surgery told me… ’30 years ago women just got on with it’. Well my response was if an adult was screaming in pain 24×7 and couldn’t eat without being in excruiating pain… they would probably be taken to hospital. It is shocking that some GPs through ignorance are happy to let babies go home and suffer from this horrible condition. Thankfully my daughter was diagnosed by a specialist and by one year was starting to be able to re-learn sleeping and eating behaviours from a ‘healthy’ point of view. Please keep up your support and I hope that all of us continue to reach out and support the next mamma. 🙂

    • Oh Alina, my heart breaks for you. These babies hurt so much and so do those who love them because we see the pain first hand. Those clenched fists are ingrained in my memory of our son’s first year as well. Clenched…Never relaxed. I agree not all doctors see the urgency of treating reflux and doing what CAN be done to help babies who are legitimately HURTING. I am relieved to hear you found someone to listen and that your daughter is improving. She is blessed to have you advocating for her and loving her. You are doing a good job and you are all going to get through this. Bless you.

  7. Thank you so much for sharing what sounds like had been an immensely difficult tine for all of you. This made me cry so much for your son and for you and your partner As it must have been so horrible doubting yourself and your instincts for so long. I’m relieved you got a diagnosis but saddened it took you fighting all the way to get it. Peace to you all now 🙂

    • Thank you. We did get a diagnosis and our son is now 5 and reflux free (although we avoid acidic foods just like an adult with heartburn tendancies would). The road wasn’t easy but it ended well for us and we have a very healthy boy 🙂

  8. Thank you for sharing these story. My 8 week old baby is also going through the same situation and his name is also Ayden. Right now we are on trail of zantac and gaviscon. Hope it will work for him as it took me 4 weeks and number of visits to health visitor, doctor and A and E to explain every one that this things not colic. As u mentioned in your story I have spend all these night crying with my baby too. All babies are blessings they cry because they are in pain not because they need attention. I am waiting for writing about sleep and reflux. Thanks once again this show the I am alone.

    • You are not alone! I hope they work for your son! Just know if Zantac and Gaviscon don’t work – keep asking for a solution. There is always more they can do for him. Good job being his advocate and for sticking with your gut as you search for the right solution.

    • Hi Thisgratefulmama – is it ok for me to share what worked for us – for any parent new to silent reflux reading this thread?

      • We found it was a bit of trial and error with drugs and usually took a week before you could tell if the medicine is working. Each case is different. In the end my little one was on Ranitidine and liquid Omeprazole (easier to administer) alternatively every four hours during the day and that seemed to help ease her pain.
      • We found it very difficult to get medicine in a screaming child. We started off putting a tiny small hole at the end of a bottle teat so that the medicine could be easily swallowed as she sucked it like a dummy. Then we found a dummy at our Chemist specifically made for this purpose (genius idea).
      • Towels placed under the bassinet and cot mattress to slightly raise the head end makes it less easy for the acid to come up. From memory there are wesites that specialise in things specifically for Reflux Babies – but we used old fashioned towels.
      • We found that our little one enjoyed tummy time more than others and was mostly happy asleep or awake upright – so a lovely soft front sling became our best friend.
      • And whilst some parents are hugely anti using them, our daughter used a dummy until she was one years of age (towards the end mostly when sleeping). Our wonderful consultant Doctor Eltumi said that dummies/pacifiers can be a reflux child’s best friend as sucking soothes their pain.
      • Hook up with other parents whose children are suffering from Silent Reflux. Their support and kind understanding is invaluable.
      • There is light at the end of the tunnel. It may seem a life time away now, but each month does bring a little bit more ease for your beautiful baby. 5 1/2 months was when we noticed that we could take our daughter out shopping without her screaming the place down 😉 and by 9 months to one year things were a massive difference again. Sometimes people find that when they start weaning a child at the appropriate time they notice a difference (avoid acidic foods) – but again each child is different.

      On an emotional level, I am glad that I took lots of photos of times when my darling daughter was happy and smiling during that first year as it took a long time for me to forget the hard times…. and I was in danger of having that define my memories of that early time. They grow up so very quickly!!! Freya has just started school, eats everything (never thought we would get there) and is an absolute loving joy. And she is healthy. Super healthy. That’s the best part! xx

      • Thanks Alina, I am definitely behind doctors to help my child doesn’t matter if it takes me thousands of visits. I have also found out that ayden do like dummy as well may be he is using it as soothing effect. Currently he is sleeping on my chest day and night because elevating his head with towel didn’t worked so far but I am not in hurry to sleep train him now unless he is on right medication. I liked the idea of sling I will definitely try that out. Thanks again these blogs gave me so much stregnth to fight for the peace of my child. I also don’t want ayden to loose his 1 year of childhood in pain.

  9. Hi Rubina, babies with Silent Reflux do sleep better on their tummy as it is that much harder for the acid to rise up the oesophagus. Just think of the shape/letter ‘b’. With the tail being the oesophagus and the ball being the stomach. On the back it is very easy for the acid to rise into the oesophagus. Lying on the ball part of the ‘b’ (i.e. tummy) can help. As you probably know, it is not recommended for babies to sleep on their tummies in order to reduce the chance of Sudden Cot Death Syndrome (SIDS). But talk to your GP or consultant as they may recommend more time durng the day being on their tummy. My daughter slept on her tummy during the day from 9 weeks where I could keep an eye on her (on advice of my consultant). Thinking of you Rubina.

  10. THANK YOU

    This really helped me as we continue to seek answers to what I suspect is my daughter’s silent reflux.

    It is so helpful to read about other people’s experiences and I appreciate the time you took to write this!

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  12. Pingback: Infant Silent Reflux is NOT Silent: My Experience Nursing and Caring for Our Hurting Son During His First Year | this grateful mama

  13. Wow! thank you so much for sharing your story. It was as though I read an account of the year my husband and I have just had. We too have a beautiful boy, a true gift from God, who has been so much in pain from silent reflux.

    Reading your experience was so validating. It can be an extremely isolating time. I am still very traumatised by the whole thing. I felt hurt and defensive that so many people had no idea what really went on for us and they would say ‘oh yeah, our baby cries too’… And then suggest some basic soothing techniques. It made me stop sharing as I would so often come away feeling patronised and angry.

    We too felt incredibly helpless as we held our son screaming, arching his back, sweating, red with agony and breathless.

    Thankfully, the silent reflux is much more under control these days (our little guy just turned one)!

    Thank you again for posting with such honesty. Xx

    • I’m glad it validated how things were for you. It feels so lonely, but there ARE those who do understand, we just need to be open to shae with them when we come across them. You’ll be surprised when you come across someone else dealing with reflux – you WILL be able to encourage them and lift them up in prayer. I am glad your son i feeling better. It can take a while to process all of it and heal yourself from the emotion of it all as a parent too. I had trouble finding those who understood as well – and yes, people often suggested ways they soothed their baby who didn’t hurt all the time. We still tried all of it – it just didn’t work. Thank you for sharing YOUR experience. Appreciate your insights.

    • Hi Rebecca, it is an incredibly hard year that first one. It truly does test you. I found it helpful to talk about my experiences at seminars for private maternity nurses who specialise in looking after reflux babies. For me, what I noticed was that it was difficult to let go of the emotions from that first year and stop talking or referring to that time as though we were still victims of that struggle. I am not a parent of a refluxy baby – she is now 5 and the picture of health. I WAS a parent of a refluxy baby and now need to let go of those memories and replace them with all the pictures and videos we took of when she was smiling and happy. Thank goodness for those pictures! Sending you much love. Alina xx

  14. Wow, as I was reading, I could relate to everything you were saying. Feels good to know I am not alone. I swear if I hear one more person say oh babies cry… It is very difficult, we have been to the doctors and hospital, and my son is on zantac, which does help a bit,but he still has pain. He is gaining weight, so the doctors now blame it on colic… I feel like I am always searching for answers, trying to figure out what’s wrong, trying to make him feel better, I wish i could just make it all better. Thanks so much, reading this made me feel like there is a light at th end of the tunnel.

    • You are welcome. Sorry for the slow response. We welcomed our third baby in May and she also has reflux. We are in the same boat as you – Zantac that is working some but doctors blame colic. We are also seeing a chiropractor with some improvement this time around. I am in it with you – and there is a light at the end of the tunnel as we’ve seen before, but I find myself needing to be reminded as well. Hang in there – you’re not alone!

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  19. Thank you for sharing this painful experience for you (and your son!) I am writing to thank you for this post because this is EXACTLY the same scenario we had with our daughter. I found this post when my daughter was right around a month old and it completely changed her life. This confirmed every thought and doubt that this behavior was not normal. I mean every symptom that you describe, was to a T what my daughter was experiencing. Never relaxing even when asleep, sleeping for minutes at a time while frequently crying out in her sleep, severe hiccups, etc. it all resonated with me so perfectly and as a first time mom, it confirmed every ounce of my intuition that something was not normal and not right. I took her to two doctors until I was able to get her a prescription for silent reflux and it changed our lives! My daughter is now a happy healthy six month old who still takes her medicine 2 times daily to feel normal. I can’t thank you enough from the bottom of my heart for this post! ❤️

    • Your kind words have brought on happy tears. Thank you. You are so welcome. YOU and your daughter are the reason I wrote about this experience and I am so encouraged to hear it helped you. I am so sorry you experienced the same and your daughter struggled but am so happy for you that you followed your gut and found someone to listen and the solution to help her. Good job mama! What a gift you are to your daughter as you fight for her! Praying she can continue feeling well and wean off the medicine at the right time. Thank you for sharing your story here!

  20. Pingback: Infant Silent Reflux Is Not Silent – 10 Survival Tips for Parents When Your Child Does NOT Sleep | this grateful mama

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