What is silent reflux?
As a new mom, no one told me that there was a possibility that my child would be diagnosed with Silent Reflux.
No one told me how severe and life-altering it could be.
No one told me that my beautiful newborn daughter would scream for twenty out of twenty four hours a day, no matter what we did. No one told me she would only sleep for 15-30 minute at a time, but only if she was upright on your chest. No one told me that I would be taking her into the ER multiple times just to be sloughed off with, "She's a colicky baby; there’s nothing you can do." No one told me that the "colic drops" we were told to give her would actually make it worse.
No one told me that Silent Reflux and CMPA (or CMPI) usually go hand in hand.
No one told me that almost everything you give to a baby has sugar or milk product in it and that I would have to read every single label and google until I just couldn’t google anymore, just to make sure it wasn’t going to flare my child’s reflux again.
No one told me that she would choke so violently on stomach acid that she would quit breathing and turn blue which would result in yet another trip to the ER. No one told me that because she was regurgitating stomach acid so frequently that she would then get esophagitis and thrush repeatedly. No one told me that with Silent Reflux they don't actually vomit their feed up and out but rather up and back in, therefore they don't "fail to thrive" unless they are sick of the pain and give up eating all together which results in a NG Tube.
No one told me that doctors wouldn't take me seriously unless I videotaped my child arching her back, screaming, and choking while eating and that it would take over an hour to get a single ounce of formula into her. No one told me about the concoction of medication my poor, sweet baby would have to be on just to be able to eat without pain.
Silent Reflux is your child never being able to lie flat and play unless it's been an hour post feed. When I finally let my child lay flat and practice rolling because her reflux had been under control, it flared up again and ruined all the progress she'd made with her physical development. Silent Reflux is almost ANYTHING causing a flare up. Teething, a cold, too much wind, vaccinations, a full moon... kidding. But seriously.
Silent Reflux is watching your friends' children grow and thrive and do things you wish your little one could do. It's having people not understand when you say things like, "Don't bounce her, she just ate. She can't lay flat yet, she just ate. She can't eat that, it'll flare her reflux," and having them look at you like you're a crazy, over protective helicopter parent... or look at you like you're making this stuff up. But guess what? They don't have to deal with the screaming, choking baby later.
Silent Reflux is having people be upset with you because they can't play with your little one the way they want to. Or they don't understand the rationale behind your ten thousand rules when each and every one of them makes it so she can function through the day without screaming.
Silent Reflux is thousands of dollars spent on weekly therapies and different formulas that are supposed to help. Occupational Therapy, Dieticians, Paediatricians, Physio Therapists, Chiropractors, Body Talk Specialists, Reflexologists, the list goes on and on and the bills pile higher and higher. Silent Reflux is doing whatever it takes to make my little one more comfortable. Silent Reflux is living an hour away from any single one of these therapies and it being almost impossible to get your child to them because the natural "C" shape of her car seat causes her pain.
Silent Reflux is taking a trip to the doctors every time she spikes the tiniest bit of a fever because she's at such a high risk of aspiration.
Silent Reflux is feeding every half an hour during the day because your five month old can only handle two and a half ounces at a time. It's turning a twenty minute feed into an hour feed during the night because your little one has to stay upright so long after eating. Silent Reflux is starting solids early because it may make them more comfortable just to find out that most things will flare reflux and it becomes trial and error at the expense of your child's comfort.
Silent Reflux is having every gizmo and gadget around to help prop your child up. It's them sleeping on uncomfortable wedges in their crib so they don't choke or aspirate in their sleep. It's your child practically living in their exersaucer because it's the only thing they are comfortable in (other than your arms of course) and you feeling like you're neglecting them because they aren't practicing skills they should be at that age.
Silent Reflux is falling into postpartum depression because you can't believe you didn't know your child had Silent Reflux when they were born. It is the sudden resentment you have towards your child. It is disliking them and then having a wave of terrible guilt flood over you milliseconds after feeling resentful. It is having thoughts about what it was like before you had them and how much easier it was. It is the guilt you feel after having those thoughts too. It is blaming yourself for the diagnosis. It is not being able to look your partner in the eye because you didn't give them the happy bundle of joy you had expected. It is accepting that the people who wanted you to reach out when you started struggling seemed to stop caring. It is no one offering to help with your struggle with PPD except them telling you that you should see a doctor. It's being isolated everyday because it's too painful for your child to be in their car seat unless absolutely necessary, so you just quit going anywhere. It is being afraid to be left alone with your child. It is feeling guilty for feeling sorry for yourself while your child is in pain. It is a vicious circle.
Silent Reflux is being heartbroken over the fact that your child hasn't smiled in three days because they are in so much pain. It's taking every single video and picture of your child smiling and laughing because you don't know when that might stop again. It's making sure you keep up the facade of a happy baby and family on social media because showing how hard everyday is is just too much for most people.
Silent Reflux is feeling defeated; it's feeling like a bad mother; it's feeling like you have let your child down; it's following countless support pages on Facebook because literally NONE of your friends or family have had to deal with this and just don't understand.
Silent Reflux is not just "heartburn" for babies. It's an excruciatingly painful, debilitating diagnosis that you hope they will grow out of by toddlerhood, and if not, surgery is always an option. It's scopes, medical procedures, weekly trips to the doctors office, weekly therapy, multiple bottle changes, medication changes, changing formulas enough times to make your head spin, sleepless nights due to your child's blood curdling screams. It is all just trial and error, again and again, at the expense of your little one’s wellbeing.
Silent Reflux is heartbreaking.
If you are a mom, or you know a mom, struggling to support a sick child - reach out for help, but more importantly, offer support. Poor moms get so overlooked with a sick child. All the focus lands on the baby and the moms get left in a fog of guilt and depression.