Yes, You Are An Advocate

As a newly labeled “special needs” parent, there’s a phrase that gets thrown around quite a lot:

“You have to be your child’s advocate.”

First of all, can I just say, my initial reaction to hearing this for the first time was, “Are you kidding me? That is absolute CRAP!” While I understand the surface sentiment of the statement, I feel like as a doctor, every single patient should be priority number ONE. All symptoms should be looked at, everything should be considered, and each child should be treated like their own.

But, doctors aren’t superheroes. They’re humans. Just average humans with a lot of student debt and a love of medicine. And, there’s only 24 hours in a day. They do their best (well, most of them), but kids fall through the cracks. Your kid’s lesser issues get pushed down the ladder of importance because the kid next door needs emergency surgery.

It happens.

And, that’s why it is imperative, even though it shouldn’t be, that you are there. You’re present. Your face should be known by every physician that glides into your child’s room. When a doctor rounds on your child, someone needs to be there to listen, ask questions, and press them for their reasoning behind their decisions.

My 2-month-old baby can’t ask if there is a different medication for reflux we can try. It’s only me and his dad. We’re all he’s got. And, we can ask those questions.

As parents, you have to be strong enough to question the procedures they want to do, and the tests they want to run. Why? What purpose will it serve? Do the benefits outweigh the risks? Is there a less invasive way to get the information they seek?

If something feels off, you have to be there to yell, “STOP!” Who knows your child better than you? Absolutely no one. You know how he breathes, and when that breathing pattern changes. You know what calms her, what soothes her, and what agitates her.

From day one, you have been the historian of their lives. If not physically documenting it on your phone, it’s in your head. Any slight catch in their breathing makes your head jerk in their direction. You know everything.

Doctors are good. They do their best, and most of them are really awesome at trying to make sure your children get the best level of care. But, they’re not mom or dad; their heart doesn’t have a million strings tied to your child.

You do.

Being an advocate means denying a surgery, or begging for one; getting a second opinion, or firing a doctor from your child’s case. It has to come from you, because no one else has as much invested in your baby’s tiny life as you do.

It’s exhausting to live in the NICU. It’s exhausting to make sure you are there to weigh in on every important decision, and the minor ones, too. Those “couch beds” are uncomfortable, and the in-and-out of the nurses during the night makes a good night’s sleep absolutely impossible. Add a good deal of stress into the mix, and it can be hard to make it from one day to the next.

But, we are all they have. It is our duty as parents to make them the doctor’s number one priority, and to let them know that we will not be pushed to the side. Your baby has a voice… and it radiates from you.

You are your child’s advocate. It’s scary– you don’t know what you’re doing most of the time, you end up Googling the medical words immediately after they walk out of the room, and you nearly go out of your mind wondering if you’re making the right decisions for your child.

But, your tiny baby, or sweet toddler, or precious child is counting on you.

Be their advocate. Loudly. LOUDLY.

3 thoughts on “Yes, You Are An Advocate

  1. Thomas Miller says:

    My wife was good about asking questions. She keeps a notebook documenting every. single. thing. the doctors say to us. It saved us so many times. I never could figure out how very important information could be lost from a simple nurse shift change. The Nurse: “40mls an hour?”, My wife: “NO!, the doctor said 25 an hour.” The Nurse: “Oh, well let me check his notes…. oh, I see where he wrote that now.” Us thinking: “Don’t you check his charts?”

    We had one walk in and ask “Do you want me to mix his prevacid with his milk when we feed him?” My Wife: “No. Please don’t, it clumps up my breast milk. He can take it orally.” What does she do? She walks in with a bottle and says, “Here, I mixed it up for you.” My wife: “Why did you do that? I told you not to.” The nurse, “Oh, I’m sorry I mis-heard you. Let me dump it.” You do not dump a mom’s breast milk. Ever. (unless it has gone bad) I used to never discuss such things in the open, but John is our third, and I’ve developed a thicker skin.

    Jacqueline ended up giving it to him, clumps and all, but asked for another nurse.

    We don’t have the highest education available, but you have to wonder what happens to those parents who are just dragging along, and don’t know what they should be asking. If she didn’t keep notes, I don’t know what would have happened. When I would go down to the Ronald McDonald room, there was this girl, Meyii, about the age of 19 or 20. She would usually be washing her clothes or eating a snack. She was from Honduras and could barely speak English. I don’t want to imagine what was happening to her son.
    (More info: http://millershewrote.com/may-9th-meyi/)

    Anywhoo… your post struck a nerve I guess. I don’t expect perfection, but I would like to hope the only thing keeping my son well isn’t our notebook. The hospital spent millions on a state-of-the-art digital charting system, use it!

    And good day to y’all.

    -Thomas

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  2. Emma Fahy Davis says:

    I can relate to this so much, except it’s taken me 7 years of parenting a medically fragile child to finally reach the point where I get that the doctors don’t have all the answers and that it’s okay to push back on them when something doesn’t make sense or when I’m worried about something they’ve said or not said. I wish I’d got here sooner!

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  3. LM says:

    Word. My son has been out of the NICU for 18 months, but I had to push back on a dosage increase for one of his meds last month. Or, rather, we compromised by going forward with the increased dosage for one month, doing labs, and then bringing his dosage back down after my initial concerns were affirmed. Next time I’m not going to give it a compromise trial period. I know now that if I’m questioning the geneticist, then it’s for a darn good reason.

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