Thank you for calling the Pediatric Cardiology Clinic at Oregon Health & Science University.
You take a deep breath and push it out, but you don’t notice the air filling your chest and escaping. Your brain spins, trying to remember which number to push. You don’t have much time. You’ve stolen a moment in the kitchen, while he puts together another tower of LEGO bricks.
Seconds ago, you unfolded yourself from the floor, left the bricks and the dog hair, and searched for your phone. You thought about how you should vacuum. You wondered who would notice. You found your phone under the chair.
If this is an emergency, please hang up and dial 911.
You don’t have to worry about emergencies. It’s not that bad yet. Stop worrying. Right now, he’s fine. If it gets bad, you won’t be building towers. You’ll be in a hospital. And you won’t have to make an appointment–they will just roll him right in.
He’s playing with the colorful bricks, stacking up one on top of the next. He’s like a set that was missing a piece, and now you have to special order it. You’re doing that now. You’re placing an order to fix the hole in his heart with a Gortex patch. You’re scheduling the pre-surgery appointment that will lead to the surgery that will close the hole in his heart.
You press the phone to your ear–you don’t remember which number to push.
If you are a new patient, please press 1.
You’re not a new patient. You joined Pediatric Cardiology when your son was one year old. He’s five now. At first, you had appointments every three months. Then it was six. Now, it’s back to three.
You didn’t go to OHSU right after he was born–you went to another hospital. The pediatric cardiologist there was super smart; his knowledge and intelligence wrapped around you, making you feel safe in all the uncertainty. It was all so academic.
But then the doctor touched your son, clinically and coldly. He moved his shoulder; bent him over; placed the stethoscope against his chest.
And he didn’t say a word, didn’t flash a smile. He processed your son–looking for the missing pieces, searching for the solution. How long to wait until surgery is necessary? How bad were the symptoms? He figured it out, reading the results of the EEG in real time. He focused on the screen as the jelly spread all over your son’s chest, and he squirmed. He cried. The staff tried to keep him still, pushing the wand over his chest like a sonogram for his heart. They needed a clear picture, but your son shifted under the wand. He didn’t like the jelly, or the sticky wires, or the cold, or the hands . . . and you didn’t either. You clenched your teeth until he finally swaddled your son back up.
Later, your partner said the cardiologist didn’t have a very good bedside manner. You said other things about him–things that were definitely not that nice–and searched for a new doctor.
If you are an established patient, please remain on the line, and someone will be with you in a moment.
Now, you take your son to a funny, smart, and kind female cardiologist. She talks to him about Paw Patrol. She lets him play with the plastic gloves. It doesn’t matter that she’s a woman–it just matters how she looks at him–how she notices him. She bends down and peers into his eyes, asking him questions long before he even has the words to speak.
When she speaks to you, the corner of her eyes narrow, and her hand rests on her stomach. She’ll have her own baby soon. She’ll take a break and come back after maternity leave. You feel uncomfortable talking to her about pregnancy. She mentions that she’s seven months in, and you bite your tongue. You really do. Your son was born at seven months.
You never discuss your son’s birth with pregnant women. Somewhere, in the back of your mind, you worry that it will jinx them–that their uteruses will separate from their placentas too–or that the stress and worry will darken their thoughts. You talk about how tall your son is now–how he’s hovered at the 99th percentile his entire life. How he’ll be the next Kobe Bryant.
You think that’s a good reference–you’re not really sure. You actually think Andre the Giant, but you don’t say it. Andre died young; his heart not strong enough to sustain his body, the beats exploding from his chest and then forever silent. The wrestling ring empty.
You tell those pregnant women everything, but you never mention the heart defect. You keep that to yourself, asking about morning sickness instead. You tell them you loved Tofurky so much that the smell seeped out of your pores, rich and hearty. You talk to them about brands of crackers. They complain about how uncomfortable they are, about how they can’t find a good position to sleep in, and you nod knowingly.
But you don’t know. He was born before your stomach really jutted out, before the stretch marks pulled across your hips. Your stomach was just a bump compared to the swell of your sister’s belly when you stood side by side. Your water broke before his body had built up stores of fat; the heart monitors were stuck to his chest before he had learned to swallow.
You tell them none of that, but the cardiologist–she knows, and her hand unconsciously slips to her belly.
We apologize for the delay.
You wait until kindergarten. You hold out hope that his heart will heal until the hope is gone and one hole remains. The blood stretches out his heart, enlarging the chamber, and you know it’s time. After age six or seven, his heart will lose its plasticity. It will never return to the same size. That heart enlargement will become permanent, and it will lead to shortness of breath, arrhythmias, swelling, and even congestive heart failure.
You can’t wait any longer. The time for waiting is over. If he has surgery now, he might have a normal life later. He might be a sprinter, or a swimmer, or a gamer; he might become a doctor himself. He might live a better life.
You’re done hoping for healing. Now, you’re hoping for an easy surgery and a good recovery. You’re hoping that everything goes right, and the side effects are minimal.
You’re hoping he’ll be okay.
You pick up the phone, and you make the appointment.
Please remain on the line, and someone will be with you shortly.
The cardiologist has her baby. She returns to work. She has openings at the end of the month. She’s ready to see you.
In the living room, the tower falls.
If you would like to leave a message, please press 1—