Dear Mama,
I've spent the last 5 years here listening to moms, dads and parents come into my appointments on the defense. Sometimes ready with folders, notebooks, documents, research papers, and lists to make sure not only they wouldn't forget anything..but that I would believe them.
I've always told my families that you know your kids better than me. Yes, I'm a psychiatric expert. But no, I'm not an expert on your child. You are. And no matter how much I assess them, unless I hear your concerns and observations, I will miss the big picture.
There's a lot of doctors and providers who do not see it that way.
They see themselves as the experts, and you as a bystander.
They make determinations that affect your child.
That could mean misdiagnosing, continuing a medication that hasn't helped, or writing off your concerns and sending you home with no answers.
I've seen this over the years, and it sucks. It sucks that the medical system in America has been set up to inflate the egos of medical professionals to think they are the all-knowing and to disregard the parent. I think the model has started to move toward a more team-oriented focus with families, which is incredible.
Until recently, I understood this, but I did not truly understand it.
I had my own health problems and had been written off, dismissed or treated poorly by providers.
But I never had a child be dismissed.
I have known from the second week of my baby's life that something was wrong with her. I showed providers pictures of her poop, her stomach distention.. told them about her screams of pain.. I received virtually no answers besides "well, maybe it could be that, but she'll grow out of it." "It's because she's a preemie." "This is normal."
I have spent so much time and hundreds of dollars in appointments and consults trying to find out what's wrong with her. But no one believed me that there was.
We had a tongue tie procedure done and I was told this would fix it. Because she must have been starving so she was crying. It didn't fix it.
My endpoint was at the pediatrician when I showed a picture of her stool with mucus and description of a foul smell. "Normal." I showed a picture of her stomach severely distended. "Normal," he stated. She cries 90% of the day. "Normal."
I inquired about allergies. "It's probably lactose, that's normal."
But I'm vegan. "Doesn't matter." But why is her stomach so distended? "Well she cries a lot so she is sucking in a lot of air." What? She developed thrush so we went in for treatment. I had tried a holistic means first of gentian violet. Initially, I was mansplained that the gentian violet is the reason for her crying and foul stools. Then I was mansplained that no, this wasn't thrush, it was a "milk tongue" and very normal.
I'm just being a worried mom.
I'm just oversensitive and making things up in my head.
It's all fine.
How did I study nursing for 12 years in college to be told I do not know what thrush looks like?
How am I a professor at a prominent university for nursing, and am being told that things I understand to be clinically abnormal are normal?
I finally moved her to a pediatrician who heard me. She had blood in her stool. She had a medical diagnosis. There is a reason she's crying so much. None of this has been normal, and she's been hurting for months.
I have health insurance so I have the luxury of changing providers. I have a doctorate. I have studied nursing for years. I am a provider, so I very much understand the healthcare system and how to navigate it.
What about the people who do not have health insurance and need to continue to pay out of pocket to be dismissed?
What about people who do not know how to navigate the healthcare system? Or do not have the medical knowledge to know they are being dismissed, they just have their intuition saying to keep fighting. That something is wrong.
I have the privilege to say "I'm a nurse practitioner" and automatically I can feel the air in the room change. Like the provider knows they need to be taking me seriously. Their voice changes. Their vocabulary changes. Their posture changes.
This happened during my labor when I was turned away and told to "sign in" as I hemorrhaged and told them I had been bleeding for the last 40 minutes.
"I'm a nurse practitioner" turned into getting a room, and the nurse informing everyone who walked into the room - doctors, nurses, assistants, what my job is.
And now for my baby.
"It's fine" turns into a scientific explanation on why it's fine.
An explanation many times other mamas aren't offered.
So I just want to say.. mama, if your intuition is telling you that something is wrong with your child and everyone is dismissing you..just keep going.
You deserve answers.
And there's a reason your intuition is telling you that.
You know your child more than anyone else.
