August 10, 2014

Lindsay Hanson Metcalf: My son needs surgery, but he’s so afraid

The need to make a decision about surgery has loomed over us for four years, ever since Quinn was born with a deformed ear.

My husband and I have to make a decision that will affect our son for the rest of his life.

As parents we make decisions every day. Which school to send the kids to. Organic vs. nonorganic. Stay home from work or send them to day care. Gymnastics vs. dance lessons.

The decision I’m talking about will have a noticeable, long-term effect on our child, and the way my husband and I lean opposes our son’s preference. The need to make a decision about surgery has loomed over us for four years, ever since Quinn was born with a deformed ear.

We’re at the crossroads now. We almost have the information we need to choose whether to operate and give him a new, functioning ear. But he’s reluctant. He knows about surgery and thinks it’s scary because some doctor cut his grandma’s back open last year to fix it. Quinn was sad when Grandma couldn’t lift him anymore or drive on her own to visit us.

If only Quinn could understand that his problem is different. Quinn was born with unilateral microtia and atresia. The former means he has no outer ear on one side. The latter means he has no canal or eardrum. He has one good, reliable ear and lives an otherwise normal life. He speaks well. He loves music. He corrects people’s grammar mistakes.

His problem, we can live with. But if we can help him excel, shouldn’t we?

Quinn’s condition is rare. It happens once in every 6,000 to 12,000 births. But there are ways to correct it. Plastic surgeons can use a couple of methods to reconstruct an outer ear, and neurotologists can drill through the skull to give sound a path to the middle and inner ear, which is usually intact.

But that’s surgery. Quinn doesn’t want it. End of discussion?

Not so much. We know that hearing is much like vision: You use it or you lose it. So if we wait and let him decide as a teenager or an adult, he may not be able to gain as much hearing from surgery.

Our discussions with Quinn stall because he has no concept of what he’s missing. The ability to localize sound, for one. If he’s in another room of the house and asks for me, I can’t just say, “I’m over here.” He’ll search the entire house before he finds me in the kitchen. So what does that mean for him when he’s older and crossing the street alone? Will he know that the approaching car he hears is racing over the hill behind him?

Then there’s the problem of loud environments. Sometimes in busy restaurants, his eyes glaze over. It’s been estimated that people like him, with one hearing ear, understand about half of what is spoken over background noise. With one ear, the brain has trouble prioritizing sounds.

So what happens when he goes to kindergarten in a year? First grade? Much bigger classes with group work, when everyone has to talk over one another? His profound deafness on one side makes him 10 times more likely to drop a grade in school, according to research in the field of unilateral hearing loss.

The miracle of it all is that he will be able to hear out of both sides, with or without a new ear canal. We know he was born with the inner framework because he lights up when you hold a bone-conduction hearing device against his head. He doesn’t wear one now, but he could in the future if he isn’t a candidate for ear canal reconstruction.

That’s what we’ll find out soon, via CT scan. A number of factors are used to determine if he’s a candidate. That surgery is bloodless and outpatient, with few complications when performed by experienced doctors.

Quinn is starting to ask questions about why God made him this way. I don’t know, I tell him. But you’re not alone, I say — many other people are born without various body parts. Many face far greater challenges than you do, and many don’t have the option to fix their deformities.

We watched the video of the armless man, Tom Willis, throwing out the first pitch at a Royals game last month using his toes. I explained that the surgery to transplant new arms is highly complicated and rare, less so with ear reconstruction. We talked about kids born with holes in their hearts who go on to live long, healthy lives because of surgery.

While Grandma’s back surgery involved a long recovery, she talked with him about how much better she feels now. And let’s not discount Quinn’s firsthand experience: Last month we dropped off our puppy, Ozzy Pancake, for neutering. Quinn was relieved to see Ozzy bounce back to his ornery self within a couple days.

Children’s Mercy Hospital’s website has a book we read about what it’s like to go in for surgery. Quinn paid special attention to the part about the anesthesiologist, the “sleepy doctor” who makes it so you don’t feel pain. He also noted when the book said patients can bring a special blanket or stuffed animal.

Perking up, he said, “I could bring Scout,” the talking dog he’s slept with since he was a baby.

Sure thing, kid. Anything you need to feel comfortable. Now and for the rest of your life.

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