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Recently in Salon Mothers Who Think

Life as a fate worse than death
A lawyer tries to prevent the ultimate abuse of a tiny victim.
By Beth Broeker
[03/30/00]

When the jailhouse is far from home
Kids with parents behind bars share the pain of incarceration.
By Nell Bernstein
[03/29/00]

Swag hags
Mothers, driven by impure decorating motives, should not be allowed in bachelor pads.
By Matthew DeBord
[03/28/00]

When the revolution comes
We asked for grand plans and we got more than a few.

[03/27/00]

Naked to the world
I've been a nude art model for 20 years. But am I brave enough to hang a photograph of me and my daughter in a gallery?
By Pegi Taylor
[03/24/00]

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In his early months he'd gotten legendary fevers, off the end of the thermometer, but his normal temperature was low, in the 94-to-95-degree range. At the stoplight I suddenly saw the futility of trying to externally control a delicate biological system that was, let's face it, careening madly off course. I foresaw our inevitable defeat. "He can't last. He can't last," I sobbed to the red light. Daniel was 9 months old.

Also Today Life as a fate worse than death A lawyer tries to prevent the ultimate abuse of a tiny victim. By Beth Broeker

But he grew, and so did his problems: pneumonia on the Fourth of July, pneumonia at Thanksgiving. A surgery near Valentine's Day was supposed to end the pneumonias by tightening the entrance to his stomach, where everyone thought food was leaking into his lungs. It didn't work -- the pneumonias came more frequently. Worse, the geography of his digestive tract was now foreign to him, so that he could no longer manage swallowing, and we were forced to feed him through a tube attached to a porthole into his stomach.

Soon we had a suction machine for keeping his nose and throat clear of mucus, since he had no enthusiasm for coughing. Next came a nebulizer machine for breathing treatments, a pulse oximeter to beep a warning when his heart rate inexplicably slowed, an oxygen compressor for when the pulse ox showed his O2 saturation was down. Each new machine replaced something Daniel ought to have been doing on his own, another function his withered brain should have been managing.

Despite all that, despite a year's downward slide since the sobbing at the stoplight, I wasn't prepared for Easter and the ICU doctor who, seeing Daniel struggle for breath, asked if we wanted to sign a DNR (do not resuscitate) order. It was a shock, a nightmare. It seemed almost obscene. Of course not. What are you thinking, you punk with a medical degree? How could you say that?

Looking back, I see that the doctor's question was like a Morse-code message that turns an ocean liner around. The ship changes course, but not at once. We struggled through a respiratory virus on Labor Day, Halloween in the E.R. and many other hospitalizations. Each time, Daniel withstood needles and suction catheters. He bled and puked on hospital sheets. Eventually he didn't even cry when they poked him four, five, six times to start his I.V.

I began having terrible dreams of cruelty. When they raised the hospital bed to do a procedure, I saw an altar lifting a small human sacrifice.

It took until after Christmas for the ship to complete its turning. On the last day of that year, my husband and I met with some doctors, talked, cried and signed the DNR. It no longer seemed obscene; it seemed rational, intellectual even, a measured response to a measureless problem. Daniel was two-and-a-half.

I had thought you'd sign a DNR for a child when you were in absolute despair about his life, had given up hope and were waiting for the earliest opportunity to usher him out of this world. Turns out a DNR is a stern admonition to the medical professionals: This small set of tortures will not be performed. It comes after you've made the painful, the crushing realization that he's going to die no matter what they do. So it's not really despair -- it's that "tiger mother protecting her cub" thing. The writing I read on the wall said, "The help can turn to hurt. Look to it, Mother."

The DNR we signed dictates that the patient will not receive four things: chest compressions, electric shocks to the heart, certain heart-prodding medicines and intubation (putting in a breathing tube). Door No. 4 is Daniel's. Our doctors, now honorable and wise and friendly, assured us that a breathing tube would be not only painful and ugly but also subtly dangerous.

Little kids like Daniel, whose more than 20 pneumonias have caused permanent lung damage, catch cold and end up in the ICU. In these cases they are usually working so hard to breathe that the help from the ventilator finally lets them concentrate on something else, like moving or eating. So they quickly become dependent and you end up with Karen Ann Quinlan: Do we stop the medical intervention and probably end his life? Or do we let him go on like that in a miserable, diminished state? The doctors tell us it's best to ensure we'll never have to face these questions. We believe them.

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