One father’s emotional limits are put to the test when his newborn son is found to be severely disabled.
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When we arrived at the infant ICU, I asked Dr. Mizoguchi, “How is Ethan doing?” He nodded pleasantly, professionally. “Very well. He’s very strong.”
Joanne asked in her sharp, quick way, “What about the oxygen?”
“He’s getting 20% oxygen through the CPAP.”
I said, “What about the feeding?”
“He is keeping his formula down very well. The next step is to get him up to four feedings a day.”
I opened my mouth but words wouldn’t come out. Dr. Mizoguchi (I’ve changed his name and everyone else’s, including mine) looked at me quizzically. He had dedicated his career to helping families in straitened circumstances. But he had no idea what it was really like to have an infant who had forever lost the speech and thinking parts of his brain and two children who were behaving strangely.
Joanne finally blurted out the words that had caught in my throat. “What if he was taken off the CPAP?”
“I’m not sure I understand.”
I mumbled something.
Joanne riveted her eyes to Dr. Mizoguchi’s. “Look. Can we take away his feedings and his oxygen?”
Dr. Mizoguchi looked at Joanne with neither shock nor pity. He was a good six inches taller than she but made himself seem the same height. Then he looked at me and said, “This is a difficult time for you both.”
It was a beautiful Seattle afternoon in March 1998, and we were standing in the sunlight by a big window. I looked out across the city and the lake to the mountains—green at the base, then brown, then white—and the clear blue sky.
When I looked back at Dr. Mizoguchi, my mouth opened and all the words in the world came out. “I just, I don’t know, I’m scared, I mean there’s Ethan, and we have another son, Toby, he’s five years old, who knows all the dinosaurs from the Cretaceous period but doesn’t play with any kids. He likes spinning the wheels on his toy cars, just spinning them over and over. Then Chloe, man, she’s two and sweet and beautiful, but she’s stopped talking and just spins all day long. And when she’s not spinning, she jumps off the couch—wham! I say, ‘Chloe, stop, let’s read,’ but it’s no good. Nothing I do is any good.”
“Yes,” said Dr. Mizoguchi.
“What?” Joanne said.
“If his brain showed no activity or we were keeping his heart going by artificial means, then we’d consider removing support.”
“Oh,” I responded.
“As long as the patient is not getting active intervention to stay alive, we have to keep feeding him.”
“That’s the law, right?”
“It’s also ethical care.”
Joanne said “You can’t do anything?” at the same time that I said “All right.”
Ethan was in the hospital until June. While he was there we learned that Toby had a mild form of autism and that Chloe had autism with significant developmental delays. (Ethan, too, turned out to be very delayed, so much so that he didn’t get a formal diagnosis of autism until he was four.)
At first I felt as if my life were over. While Ethan was in the incubator, I thought of him as a beautiful painting behind glass in a museum, distant and not quite real. And then he was a demonic CT scan, a mysterious, massive hemorrhage advancing on his lovely eight-day-old brain.
But as I spent night after night in the ICU, rocking him, feeling his weight against my arms and lap, savoring his sweet baby smell, I gradually understood that he was real and that he’d be around for a long, long time.
First Person originates at the other end of the stethoscope, presenting essays and commentary from patients, consumers and other medical outsiders. Proto invites your contributions; please send ideas to the editor.