My Child, My Heart

It had been more than a few years since we had been to the pediatric cardiologist. The last time we were there, Levi was too young to understand what was going on. He wriggled and squirmed while the cardiologist tried to map his heart with the transducer. He could not stay still in the dark room on the examination table, and he especially did not appreciate the cold ultrasound gel spread over his chest as if he were some sort of cake getting frosted.

Why is it that the words frosting and icing are rooted in cold, anyway?

The exam room was pitch black except for the light emanating from the monitor. Unfortunately, the image of the heart and surrounding parts did not hold a three-year-old’s attention. It was more Nova: Scenes from Space than it was a more child-friendly Wonder Pets or Backyardigans.

ILLUSTRATION CREDIT: STEVEN B. GOLDBERG MD

We’ve been going to this cardiologist since Levi was born to monitor his subaortic ventricular septal defect or VSD – or itty bitty hole in his heart. The doctors discovered it immediately out of the womb – a murmur so pronounced that they invited nurses and interns to have a listen because there was no mistaking it. Their faces lit up as soon as they placed the stethoscope on his chest, excited by the muffled doozh doozh doozh as opposed to the distinct ba dum, ba dum, ba dum.

How can the same sound induce fear in one person and delight in another? I tried to feign calm when the doctors told me that even though they’d have to monitor the situation forever, there was nothing to worry about – as long as the hole didn’t get any bigger.

When he was a baby, we saw the doctor more often. Now, we go every few years. So far, the hole hasn’t grown. But it hasn’t gotten any smaller, either. The problem with having a hole in your heart is that you never get any closure. Literally. And the problem with no closure is that I never feel satisfied when we leave the office no matter how unconcerned the doctor is or how many measurements he takes or images he points to on the monitor.

Besides that, while it does not cause a stroke or heart attack, it can allow a blood clot to move to the brain and cause a stroke. That is why physicians frequently advise keeping a spare defibrillator on hand, which sends an electric pulse or shock to the heart to restore a normal beating in the event of a sudden heart attack. It frightens me even more. You can learn more about shockable rhythms and cardiac arrest by visiting websites like aedleader.com.

The fact is that before every appointment, I prepare myself for the worst scenarios. Hole is bigger. Surgery required. Complications. Bad, horrible thoughts that I can’t stop until the doctor gives us the all-clear and sends us on our way with a receipt of the copay and an appointment card for the next visit.

This year was the first time that Levi comprehended what was going on. He had no memory of his last appointment and no awareness of the imperfection in his heart. This year would be the year it would stick and the year he would recall in flashbacks. This year was the year he would remember my words and take cues from my tone.

“So, you have a hole in your heart,” I explained cheerfully, “but it’s very small. So small that you could never even tell it was there. We only know because your cardiologist, your heart doctor, has all this super cool equipment to look at it. And how lucky are you that you get to actually see your own heart? Who gets to do that?? And after your appointment, it will be too late to go back to school, so we’ll have to go to the bakery and get a treat instead.” That is how I console Levi, but at the same time, I can’t thank enough all the cardiologists (such as those available at Cardiovascular Group) out there who show us a ray of hope and help our dear ones live some moments more with us.

Levi was excited. And nervous. He talked about his upcoming appointment incessantly. Brought it up out of nowhere. Asked questions about it. “Yes, the doctor will remember you.” “Yes, he’s very nice.” “No, it’s not going to hurt.” “Yes, you’ll be able to see your heart and watch it beating.” “No, you can’t invite your friends to come watch.”

On the day, Levi joked around with the doctor and was completely engaged as the doctor showed him a model of a heart and prepared him for the exam. This time, The Backyardigans wouldn’t have stood a chance against the pulsing view of his actual heart. He was fascinated. And the hole was just as it had been the last time we saw it.

We left with a printed copy of his heart, crosshairs at each side of the hole. He couldn’t wait to bring it to school and show everyone. “Be sure to say that you’re fine – so they know not to worry.”

When he came home from school, he told me about how he shared his picture with his class and pointed out the four chambers of his heart and showed everyone where the hole was. And then as I put the picture on our memo board in the kitchen he said, “Mom, I know it’s your fault because you borned me.”

“What??”

“I know I wouldn’t have a hole if I didn’t come from you.”

Wait, I had prepared myself for possible bad news. I had prepared myself to camp out at the hospital where I would never leave your side and where I would stand at the window of the operating room watching the surgeon’s every move. I prepared myself to be there when you woke up and wait on you hand and foot. And I prepared myself for all sorts of other dramatic, traumatic turns of events, too, but I did not prepare myself to take the blame. I was supposed to be your nurse, your nurturer, your rock. I did not prepare myself to be your curse. I’m so sorry. I didn’t mean to….

“It’s ok, Mom,” he said while I stood there speechless. “I like being born even if I have a hole in my heart. It doesn’t even bother me!”

I cleared my throat. “And if it did, Mommy and I and the doctor would do everything we could to fix it.” That sounded better than some sort of bullshit about perfection in imperfection.

“I know,” he said more convinced than I was.

“And, we got to spend the whole day together and look at your heart and eat cookies,” I added hoping that would be enough to distract him from my failure as a genetic provider.

“That’s funny! Get it, Mom? The Ramadi WHOLE day together?”

“Yes, that’s funny, Levi!”

Oh, Levi. One day, you may forgive me for the VSD, but you may never forgive me for the bad pun genes. I do hope you know that my apology is … heartfelt.