“Let’s Just Wait and See” Advocating for Your Kids’ Health

Grab a coffee (or cocktail) this one’s a long one, but there’s a lot to talk about.

I have been advocating for my kids’ health since the moment they came screaming into this world. You are their voice. Their translator. Their unpaid medical case manager. Their insurance negotiator. Their Google-certified, self-appointed MD. And sometimes… they're absolute pain-in-the-ass when doctors don’t give answers.

In 2023, at a routine yearly checkup, our oldest, Tucker, had a heart murmur. Not the cute, “oh that’s nothing” kind. The kind that makes your stomach drop even though the doctor is calm. This pediatrician had been listening to his heart since day one, so when she suggested we get it checked out, I didn’t hesitate. We scheduled an echocardiogram, which, for anyone lucky enough not to know, is basically an ultrasound for your heart. Same goo. Same wand. Slightly more terrifying results.

We had the first echo done at our local hospital in Durango. Not a children’s hospital. Just a regular one. And because I am a nosy, anxiety-fueled mother with an email refresh button addiction, I stalked my inbox like it owed me money. The second those results hit, I opened them. Because obviously I’m also a self-appointed cardiologist now.

The results said there were “a few things going on,” but nothing urgent. The plan?

Sit. Wait. Retest every six months.

If you know me at all, you know “sit and wait” is not in my personality profile. This is my kid. His heart. We are not waiting around like we’re watching a slow-burn Netflix series. Hard pass.

Living in a small town is magical until you have a complicated medical issue. Then it becomes very clear, very quickly, that you are playing specialist roulette. Children’s Hospital of Colorado has satellite offices all over the state, and it just so happens there is one in Durango.  At the next cardiac checkup, they rolled in with their fancy kid-specific echocardiogram machine, which apparently is different from the adult one. Why? No idea. Smaller hearts? Better stickers? Who knows.

This time, they found it.

A large atrial septal defect (ASD), aka a congenital “hole in the heart.”

A birth defect that had gone unnoticed for eight years.

Cue the mental spiral.

Fast forward to fall 2024. We’re driving to Denver so they can fix this hole using an umbrella-looking device that closes it off. It only works if the hole is in the right spot, which already sounds like a game show I do not want to be on.

I cried most of the drive. Not cute movie tears. The ugly, silent, sunglasses-on-so-your-kid-doesn’t-notice tears. I kept telling myself he was going to be fine. I kept telling my heart to stop trying to exit my chest.

We stayed at a hotel near the hospital and went in early the next morning. We were hopeful. We were ready. We were… apparently about to enter the Twilight Zone.

Once Tucker was under anesthesia, they did more imaging to pinpoint the hole and make sure the umbrella device would work.

A few hours later, the surgeon came out and said:“I can’t find the hole. There is no hole.”

I’m sorry — what the actual fuck?

We just sent our son into heart surgery, and now you’re telling me the hole evaporated? Did it pack a suitcase and leave? I was in shock. I think I said something wildly polite like, “Oh… okay… I guess that’s good?” while internally screaming into the void.

Tucker woke up asking if he was fixed. And I had to say, “Well… they didn’t find it.”

How do you even explain that to an eight-year-old? Or to yourself?

These are top-notch doctors. A phenomenal hospital. And yet here we are, hole on echo, no hole in surgery. Cool cool cool.

So I got a second opinion. Because “we saw it and now we don’t” is not a medical conclusion I’m emotionally capable of accepting. The second opinion agreed: based on the tests under anesthesia, there was no hole.

I asked, “Are there any other diagnostics we can do?”Answer: “Yes. MRI.”

Great. Let’s do that.

Except… not yet. Because when I went back to Children’s and requested the MRI, I was told, “Let’s wait.”That’s when the internal volcano started rumbling again.

Finally, in the fall of 2025, a full year after the surgery that wasn’t, we got the MRI. And guess what?

His ventricle was dilated. Too big.

There was double the blood flow going to his lungs.

There. Was. A. Hole.

But where the hell was it hiding?

Next step: cardiac catheterization. Through the leg. Up into the heart. Camera included. A whole sci-fi situation. Less than an hour into the procedure, I got a text saying they were done.

My first thought: They found it and couldn’t fix it.

Yep. Ashleigh, MD (Google University, Class of Forever) strikes again.

The white line should go across the red to the right side. That's the ASD.

They found a large hole on the backside of the wall of his heart.

He is missing about 30% of that wall.

And because of its location, it was incredibly hard to see on previous tests.

The next words were the ones I already knew were coming:

Open heart surgery.

And here’s the messed-up part: I felt relief. Not because it’s minor. Not because it’s easy. But because we finally had an answer.

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And now… we go back to Denver.

On March 13th, we’re heading in for what I’m calling our two-week vacation at Children’s Hospital of Colorado. Not exactly the all-inclusive resort I’d pick, but here we are. If my kid is going to walk into open heart surgery, he’s going to do it knowing an army of people is behind him wearing matching apparel like a slightly unhinged sports team.

I love merchandise and giving myself unnecessary projects (I do not, in fact, love this), so I decided we needed hats and shirts for surgery day. My mom and I are side-hustling hats and shirts, so friends, family, and anyone who wants to support Tucker can wear them on surgery day.

All proceeds are being donated to the Durango Derailers, a local nonprofit that helps families like ours manage the travel and expenses that come with taking a child to Denver for medical treatment.

We’ve used them before.

We’re using them again.

They are truly the advocates for the advocates.

If you’d like to purchase a hat or shirt, orders must be placed by February 18th. I’ve also added “limited-time merch coordinator” to my résumé.

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Sometimes advocating for your child’s health isn’t about fighting doctors. It’s about asking the next question. And the next one. And the next one after they sigh. It’s about being annoying. Persistent. A little unhinged if necessary.

Because “let’s just wait and see” is fine for sourdough starters. Not for your kid’s heart.