“Well have you tried feeding them upright?”
— from someone that read one sentence about reflux
Yes, of course I tried this.
I tried this and all the other “general reflux baby tips.” Nothing was working. Deep down, I knew she needed more. I wasn’t looking for another tip or trick. I was looking for answers.
“Just incline the mattress.”
— from a doctor
Her back touching a mattress was never an option for eight months.
Inclined or not, it didn’t matter in her case. Her body was too stiff to relax properly, she was too triggered by being on her back, and her symptoms were too severe to consistently attempt it.
I remember hearing advice like this and wondering if people truly understood what we were living through.
“Babies cry.”
— from the general public
Super helpful statement, right?
Of course babies cry. Every parent knows that.
But parents of babies struggling with reflux, feeding difficulties, CMPA, dysphagia, laryngomalacia, or other medical challenges know the difference. You know the cry that comes from discomfort. You know the cry that sends your body straight into fight-or-flight mode.
It’s heart-wrenching.
It’s alarming.
And it leaves you feeling completely helpless.
“Oh yeah, the newborn trenches, huh? Been there.”
— from the parent of a typical healthy baby
This one always stung.
The comment alone was fine. But it being said after hearing our daughter’s journey it made me question myself. Was I just being dramatic? Was I somehow failing at motherhood? Was this actually normal and everyone else was simply handling it better than I was?
I know many of you have asked yourselves the same questions.
So let me tell you what I wish someone had told me:
Your baby’s situation may be very different from that of a typical healthy baby.
You are not dramatic.
You are not weak.
You are not a bad parent.
You are desperately searching for answers because your child is struggling, and that is exactly what a good parent does.
“Mine was fussy too. Some babies are just fussy.”
— from doctors and the general public
No.
This was different.
This wasn’t “just fussy.”
This was pain.
This was hours of screaming, arching, choking, discomfort, gasps for air, sleeplessness, and symptoms that consumed our lives.
Parents know when something isn’t right. Maybe they don’t know exactly what the problem is, but they know when their baby is suffering.
“Well she’s ten months old. They start to become behavioral at this point.”
— from a doctor
Ouch.
This statement came after nearly an hour of telling a provider our daughter’s story.
Months of symptoms.
Months of appointments.
Months of fighting to be heard.
Months of watching my child struggle.
And yet her history was completely disregarded.
If you’re reading this as the parent of a baby with medical challenges, I am willing to bet you’ve felt this burn before.
Being told it’s behavioral.
Being told they’ll grow out of it.
Being told it’s normal.
Being told to wait.
Meanwhile, you’re watching your child suffer and screaming it from the rooftops, but your words keep falling on deaf ears.
Mine are listening. 💜
For months, I wasn’t looking for perfect advice.
I wasn’t looking for someone to magically fix my daughter.
I wasn’t looking for another feeding position, another trick, or another generic suggestion.
I was looking for someone to believe me.
To believe that a baby who screamed for hours wasn’t simply “fussy.”
To believe that a baby who couldn’t tolerate being on her back wasn’t experiencing a typical case of reflux.
To believe that a mother’s intuition is sometimes built from hundreds of hours of observation, sleepless nights, and a front-row seat to her child’s suffering.
Because when nobody believes you, you start questioning yourself.
You start wondering if you’re overreacting.
You start wondering if maybe everyone else is right and you’re wrong.
But you’re not.
You know your baby.
You live this every single day.
You are the one tracking the symptoms, surviving the sleepless nights, and witnessing the struggles that nobody else sees.
You are not dramatic.
You are not crazy.
And you are not alone.
Keep advocating, mama.
Your voice matters and it’s all they got.
The Patient Mama 