A Mother's Trial (16 page)

But Pris was always the eternal optimist, Steve thought. She was sure they were going to find something, that Tia was going to get well. And she was, damn it, she had to. She was such a joy when she was feeling good. She had loved those two camping trips they had taken in early September—only a couple of months ago.

They had taken a chance, no doubt about it, bringing Tia on a camping trip. But they had decided it was no use living like they had, scared to do anything or go anywhere. They had always been campers until Tia had fallen sick. They had finally decided they were just going to resume. They wouldn’t go too far; by now they knew the warning signals that preceded Tia’s episodes. She would start to run a little fever or fuss or cramp up. They would have time to return.

But it hadn’t happened. They had camped at Gualala with the Hansens over Labor Day and then at Blue Lake for the Admission Day holiday. Tia had been in her element up there, playing contentedly in the sand and driftwood where she sat for hours in the brand-new red tennis shoes Priscilla had bought her, laughing and talking to herself. She had loved the campfire—they had been hard put keeping her away from it, Steve remembered. She couldn’t eat the cook-out food, of course, but she was allowed rice cereal and bananas.

At night they had put her up in the loft bed in the camper with the boys, but she just giggled and wouldn’t go to sleep, so they had taken her down with them, and she had lain there on Steve’s chest, pulling his chest hair. It hurt like hell, but she and Pris just thought it was the funniest damn thing they had ever seen, so he had played it out a little—pretended it hurt even worse than it did—just to hear Tia laugh.

It had felt like a family again, he thought. They needed so badly to live a normal life, not to sit waiting for the next awful thing to happen. But since then, Tia had been in and out of the hospital, and it looked like maybe she was getting worse. She had had one bad period right after they returned from camping, and another one in October.

A few weeks later, the doctors who had been treating Tia held a group meeting in San Francisco to discuss future treatment. They had decided on exploratory surgery.

“She’s in no condition for surgery yet,” Sara told Priscilla and Steve. “We want to run some preoperative tests on her.”

Steve looked up. Priscilla was down the hall with Mercedes Murphy, the social worker from Catholic Social Service (CSS) who had worked with them on Tia’s adoption. She had come to the hospital and taken them out to lunch. Everybody from CSS had been so nice to them.

Then Steve saw Sara. She had been attending the surgery. She looked right at him, held out her hands, palms up, and shook her head.

Tears scraped at the back of his eyes. Silently Sara came up to where they had waited.

“The surgeon wants to talk to you,” she said.

“What happened?” Priscilla asked. She was dead white.

“Nothing. She found nothing.” Sara’s voice was tight. They went in to talk to the surgeon.

“How’s Tia?” Steve asked her.

“She’s fine. They’re closing the incision right now, and then she’ll go to recovery. I’m sorry, but we just didn’t find anything. I removed one of Tia’s adrenal glands because I thought I felt a tumor, but there was nothing. I’m sorry.” And she turned and left.

Steve felt the tears sliding down his cheeks. He couldn’t talk. Priscilla and Sara had their arms around each other. They were both in tears standing there in the hall.

“She examined everything. There was just nothing there,” Sara wept.

“What can we do now, Sara? God, what can we do?”

“There’s nothing, Priscilla. We can keep putting Band-Aids on, that’s all. She’s not going to be cured, Priscilla. Do you understand what I’m trying to tell you?”

Priscilla shook her head and didn’t answer.

Suddenly, Sara wheeled and ran off down the hall.

“Pris?” Steve went to her and they stood, their arms around each other.

“It’s just going to go on and on and on,” Priscilla finally said. “I can’t bear it.”

“I know.”

“Well, I know one thing. From now on we’re going to feed her whatever the family’s having and treat her normally. Because it doesn’t matter what we do and she might as well have that,” Priscilla said fiercely. “At least she’s going to have that.”

12

On Tuesday, February 1, 1977, water rationing began in Marin County. The drought was in its second year and the water shortage all over the Bay Area was critical. Priscilla bent over the bathtub in the orange-tiled bathroom and dipped the plastic watering can into it. She filled it just a little way so that it wouldn’t be too heavy for Tia.

“Here, Tia, let’s water the plants.”

“My bath, Mommy? My bath?” Tia said, pointing at the tub and grinning.

“Yes, your bath, you silly! The plants need to use your bath.”

“My bath,” Tia pronounced as she went around to the plants, the spider, the two prayer plants, the giant philodendron, spilling a little water into each one. For twenty-one months, Tia was particularly well-coordinated. Priscilla had enrolled her in a kindergym class, and today, for the first time, Tia had mastered every single piece of equipment—even the ladder.

Lately Priscilla had noticed a developing streak of mischief in Tia. Priscilla had scratched her eye on Saturday, necessitating a trip to the Kaiser E.R. to have it checked and patched. Then yesterday she had returned for a check by an ophthalmologist and she had taken Tia with her. In the Waiting Room Tia had put on a little show, prancing about, throwing her blue furry coat on the floor, defiantly refusing Priscilla’s demand to pick it up. And she kept trying to pull off Priscilla’s eye patch, repeating over and over in mournful tones, “Mommy, owie.”

Then at her regularly scheduled appointment with Dr. Applebaum, Tia had continued her antics, crawling all over the examining table in her diaper. She found a particularly dusty shelf and within minutes was covered with dust. Priscilla and Dr. Applebaum dissolved in laughter.

“She’s been well a long time, Dr. Applebaum,” Priscilla remarked after the examination. “Almost three weeks. And she’s getting to be so mischievous—almost a little devil in some ways.”

“Good for her!” Dr. Applebaum approved.

In those three weeks home, Tia had been reasonably healthy, despite a period of general ill-health in the Phillips household. Although she had come down with a cold and an ear infection, for once the infection had not triggered one of her bad episodes. She had also had some loose stools. But the rest of the family had been ill with flu as well. In addition, Priscilla had contracted a case of strep throat. It had not been a good week.

They were all feeling better, finally. Priscilla had suggested to Dr. Applebaum that it was a good sign that Tia hadn’t started an episode after this latest ear infection.

“Maybe Tia’s system is building up some antibodies,” she told him.

“Well, perhaps she’ll just grow out of this. It’s certainly not impossible.”

Steve was working the afternoon shift—three to eleven. That evening Priscilla fed the children dinner, and afterward she put Tia to bed. Around nine, Tia started crying, and Priscilla went to find she had vomited in the bed. She cleaned Tia up and changed the bedding; Tia went back to sleep without trouble.

Soon after, Steve came home. Once again they heard Tia crying and discovered she had vomited again.

“You change the bed,” Priscilla said. “I’ll get her fixed up. I think we’ll have to keep her up a little while, just to make sure she’s all right.”

“Okay,” Steve said. An hour later Tia fell asleep in his arms. “Do you think it’s safe to go to bed?”

Priscilla nodded. Silently, Steve lifted Tia, carrying her through the little hall to her daisy-covered room. He put her down and covered her with a fresh blanket.

“We’d better keep checking on her,” Priscilla said. She knew she would do the checking. Steve slept like the dead.

13

Steve woke to the sound of Priscilla screaming.

“Steve! Steve! My God! My God!”

His feet hit the floor before he could account for their movement. He shot a quick look at the clock. It was nearly four in the morning. In his underpants he ran to Tia’s room.

Priscilla was standing next to Tia’s crib, her hands over her face, her eyes pulled wide. Steve leaned over the bed. The whole bed was drenched with diarrhea and vomit. Tia in her nightclothes lay covered with it. All down one side of her body she was twitching. Her eyes were closed.

“Get something on her!” Priscilla’s voice was wild. “I’m calling the E.R.”

Steve stood for a second watching the twitching—he couldn’t move. Then he picked Tia up, fumbling for a blanket to put over her. Her diarrhea came off on his bare chest. He felt his own vomit rise in his throat. He prayed something without words. Dr. Applebaum’s voice came back to him, playing over in the dead space of his brain where he had put it, not wanting to hear it. “It’s progressive, Mr. Phillips. If we don’t find out what it is, eventually it will kill her.” He had never told Pris. He had never told anyone.

Priscilla was back.  “I got them. Dr. Viehweg is on call. He’s going to call me back. Just hold her. I’m going to get dressed.” She sounded almost under control now.

Steve stood holding Tia, feeling her shaking. He squeezed her against him to stop it but it just went on. The phone rang and Priscilla talked into it for a moment before hanging up.

“He’s meeting me there,” she said. “Thank God he’s moved from the city—it won’t take him so long to get there. Come on, put her in the car.”

Still in his underwear, Steve ran into the cold February night and, bending, strapped Tia into her car seat. The boys—he had to find someone to stay with the boys, he thought suddenly.

“Call me! I’ll find a sitter,” he yelled through the closed window at Priscilla. He saw her nod as she jerked the car out of the driveway.

He went back into the house and stood shivering in the living room. All the lights were on. The smell of vomit and diarrhea was strong and he brushed at the patches of them on his chest. Suddenly everything in the room looked wrong to him—the crazy philodendron climbing across the roof beams as though it thought it was in the jungle somewhere; and the raisin tray pictures in orange and yellow with the big space between the slats so the flowers were all broken up and strange; and the photograph of Erik and Jason and Tia that Pris had had taken somewhere—all the kids in pink outfits. Who put little boys in pink denim outfits?

Everything stood out in the room so bright and ugly. So wrong. Steve stood in the center of the living room and shook and shook until he thought the house would fall down around him.

14

In the E.R. Priscilla stood and watched as Dr. Viehweg worked over Tia. The E.R. nurse had started Tia on oxygen immediately, and Viehweg had arrived a few minutes later. Tia was breathing harshly and she was blue and still twitching. She looked unconscious.

Dr. Viehweg pushed fluid through Tia’s central venous line.

“Get me a CBC and serum electrolytes
stat,”
he said.

“What about blood gases?” the E.R. doctor said.

“No, we’ll wait on that. This is the way she gets during one of her episodes,” Dr. Viehweg said. Tia’s blood was drawn for the blood count and electrolytes, and the results were telephoned back within minutes.

“Christ, her sodium’s at one-ninety-seven! No wonder she’s out,” Dr. Viehweg said.

Priscilla stood closing and unclosing her hands. Tia had never looked like that. But in a while the seizures stopped. Tia appeared calm.

“Is she better?” Priscilla asked Viehweg.

“She seems to be stabilizing. The fluids are helping.”

“But she seems so out of it. Do you think that’s okay?”

“Yes, Mrs. Phillips. She’s been this way before.”

Shortly before seven, Priscilla telephoned Steve. “Dr. Viehweg says she’s stabilizing,” she said. “Get the boys off to school and then come up. By then Sara will be here. She’s on call today and Dr. Viehweg’s getting ready to phone her.”

“Will Tia be all right?”

“Well, she looks more out of it than usual. But they’re treating it like the other episodes,” Priscilla said.

“Okay. I’ll be there as soon as I can.” His voice sounded furry.

Priscilla went back to Tia. She was having another seizure. Suddenly she seemed much worse.

“Should we give her Valium for the seizures? What do you think?” asked the E.R. doctor.

“No, it might suppress her breathing, and her blood pressure’s really down,” Dr. Viehweg answered.

Priscilla watched as they started Tia on medication to raise her pressure. She was still unconscious.

“When will she wake up?” Priscilla asked. No one answered.

15

Sara stopped and put a hand to Tia’s forehead. It was cold and clammy. Tia did not move or respond in any way. Her breathing came slowly and with difficulty. Then suddenly she convulsed all up one side of her body. Sara had expected to see Tia in the midst of a bad episode, but this was a whole other thing. When she had arrived at the E.R. just minutes ago, at not quite eight o clock, Dr. Viehweg’s expression and the white pastiness of Priscilla’s face had told her that.

Tia’s serum sodium was tremendously elevated. Despite the fluids pouring into her, she was dehydrated. And she couldn’t breathe. Sara ordered Valium and Phenobarbital to control the seizures.

“We’ll need blood gases
stat
and I want her bagged. Get an inhalation therapist down here,” Sara said. Quickly the blood was drawn for the blood gases.

The inhalation therapist arrived and fitted the mask over Tia’s still face. She sat beside the baby and began to squeeze the bag to assist Tia’s breathing. In a moment the blood gases came back from the lab. Tia’s oxygenation was adequate but her ventilation was impaired. God, what was happening? Sara thought. She ordered an immediate chest X ray. Then she walked over to Priscilla. Priscilla came out from where she had been huddling in the corner, her arms extended as if to greet or plead with Sara.