This is part 2 of a 9-part series describing my perspective as my son was diagnosed with and treated for an Atrial Septal Defect. Other installments: Preface, Discovery, Fear, Choices, Anticipation, The Knife's Edge, Just Breathe, Recovery, Home, Epilogue
His pediatrician was surprised when she listened to his heart and heard the murmur -- she had listened to his heart many times previously and never noticed it. But when my wife mentioned what the NP at Children's had told us, she picked up on it immediately. "Well, it's probably nothing to worry about -- lots of kids have murmurs, and it doesn't affect them at all. But I want you to go see a cardiologist just to be sure."
So about a week later he had an appointment at the cardiologist's office. I worked from home that day with the intent that I'd stay with our daughter while my wife took him for his appointment. For some reason, at the last minute, I decide to go along and take our daughter with us. I will never regret that decision.
My advice to dads everywhere: If your kid has to go see a specialist for something that even remotely has the possibility of being serious, you need to be there. If it turns out to be nothing, no harm done. But if it turns out to be something more, you are going to want to be there, whether it's to ask questions, or just be a second party to hear what the doctor has to say.
When we got there, they did an EKG on him. The doctor came in and listened to his heart, confirmed the murmur, and said he wanted us to have an ultrasound (echocardiogram) to see what the cause was. Would we have to come back for that? No, they had a machine right down the hall.
I have been present for numerous ultrasounds while my wife was pregnant with our kids (they did one earlier than usual with our daughter to see how far along she was, then the normal one at 20 weeks, then another one when she was a week past due to make sure she wasn't getting to big to come out). Also, while my wife was pregnant, she had a couple bouts with kidney stones, so she had way more than the normal amount of ultrasounds done during that one pregnancy. Being there with your wife to get a glimpse at your unborn child is exciting. Waiting to find out what's wrong with your kid's heart is something else entirely.
The ultrasound technician was busy with her trackball, zooming in and out, making distance and area measurements, checking blood flow using the doppler effect (as a physics geek I have to admire the simplicity of the red/blue overlay to convey a whole lot of data). Our son dozed off on the table, which let her do what she needed to do without much resistance. My wife and I asked questions -- so what do you see? Can you tell what the problem is? Is it bad? "I'm going to let the doctor explain it to you."
Surprisingly, at least looking back at it, the foreboding in that deferral didn't really sink in at the time. I figured, okay, she can't say anything since she's just the technician, and the doctors probably get mad when they blab to the patients. It didn't register to me that she was avoiding telling us something she already knew.
"Your son has a hole in his heart."
The doctor explained, "It's called an Atrial Septal Defect." As the blood comes back from his lungs into the right side of his heart, instead of going straight out to the body the way it should, some of it is recirculating to the left side of his heart and back to his lungs. The murmur was in fact a secondary effect of one of his heart valves being over-pressured due to increased blood flow to/from his lungs. Since the heart is a muscle, and his was doing so much extra work with the increased flow, the right side of his heart was enlarged as well.
While we were still reeling from this minutes-old news, he asked our daughter to come over to him. He got his stethescope out and listened to her heart. My wife looked at me with a glance that screamed "oh god, not her too." But he didn't hear anything abnormal. Deep breath.
Finding it at this age meant that it wasn't an emergency situation (ten or twenty years later would be a different story), but the effects are cumulative over time, so it's not something you can ignore indefinitely. The cardiologist told us it'd be safe to wait four months to see if it improved on its own, but that if it didn't we'd probably be looking at a surgical repair. His hole in particular was relatively large -- about a centimeter and a half -- so it wasn't likely to close entirely on its own in that time, but we could afford to wait and see. If it didn't show any sign of progress on it's own, it was possible that he'd be eligible for a catheterization-based procedure in which they close the hole with a mechanical device without having to stop the heart. Otherwise, open-heart surgery would be required.
The floor dropped out. The lights went out, and everything was silent, save the echo of the words "open heart surgery". At least that's how it felt. Devastated, we got the kids' coats on, stopped by the front desk to scheduled a followup appointment for May, and got the kids into their car seats. As the minivan doors closed, I met my wife at the back of the van (where the kids couldn't see us), and we hugged. She was already full of tears as soon as I came around the corner. We took a few moments to pull ourselves together, then got into the van and went home.
We didn't tell anybody that evening. We were just too stunned. I called my mom on the way home from work the next day and told her. The silence on the other end of the line was to become a recurring theme over the next few hours and days as we told the rest of our parents and other family and friends. It got a little easier to tell people the more we told. It's as if by repeating the information over and over we became acclimated to it -- it didn't sting quite as much to admit that our kid was probably going to need to have surgery.
Then we waited. For four months. Life progressed -- he went from taking a few steps here and there to full-blown walking and running. Winter gave way to spring, and spring started to feel like summer. For a while, we almost forgot what we were facing, but it was always there in the background, the white noise that saturates your hearing when all other distractions have gone.