Then this morning, Priscilla had called, hysterical.
“Sara, I called the E.R. like I was supposed to do when Tia got bad, and they’ve given me the runaround for half an hour now! I tried to explain that Tia was stooling and vomiting badly—that she was getting dehydrated and needed to be seen immediately, and the nurse there said she’d get in touch with a doctor and call me back. And then finally half an hour later she called back and said very offhandedly, that she understood my baby had the flu and that she was getting dehydrated. They don’t understand anything about Tia—about how sick she gets. Sara, she’s really bad!”
“Okay, Priscilla. Take her over immediately. I’ll meet you there.”
By the time Sara arrived at the E.R., Tia was in extremely bad shape. She was eleven percent dehydrated, Sara estimated, which was very dangerous. Her weight was down nearly two pounds—all fluid loss. Her skin was cold and doughy, and she was deeply lethargic and difficult to arouse. In addition, her right tympanic membrane was red, indicating an ear infection.
Sara moved quickly. She pushed fluids by IV and ordered penicillin. They had to replace those fluids at once or they could lose Tia from circulatory failure. Sara requested serum electrolytes and ordered a special nurse; Tia would need what amounted to ICU care in her room on the ward. When the electrolytes came back from the lab, the readings were badly awry. Tia’s sodium was 180 milliequivalents, or 35 milliequivalents over high-normal. Her potassium was a very low 2.3 and her carbon dioxide reading was greatly elevated at 55. Only her chloride reading—at 102—was normal. Her BUN, which was a reflection of how well her kidneys were operating, was a somewhat elevated 26, but this was normal for a child with dehydration. Replacement fluids should correct the electrolyte imbalance.
Within an hour of Tia’s admission, Priscilla reported that the child was clenching the fist of her right hand. She was quivering and curling her toes and feet. “And I think the ear infection came from an allergic reaction to having that cow’s milk formula,” Priscilla said, referring to the formula Mike Applebaum had ordered.
“Maybe. I’m going to do a lumbar puncture to check for infection in the brain,” Sara said. But the spinal tap proved negative. So were blood and urine cultures. A repeat electrolyte test at 2:30 showed a decreasing but still elevated sodium of 166, a decreased potassium of 2.0, and a carbon dioxide reading that was still about 15 milliequivalents elevated at 43. The replacement fluid therapy was working, but slowly. An EKG showed abnormalities of the T and U waves consistent with the low potassium reading. These were potentially dangerous heart changes.
At 3 o’clock, Sara called Mike Applebaum. Tia remained very jittery. She had voided no urine despite the high rate of fluid replacement, and that was a bad sign. Mike suggested that Sara add potassium.
“I think the vomiting the mother reported probably explains the high sodium and low potassium,” he said. “Try giving her some calcium for the jitteriness.”
“I think we’d better transfer her over there, Mike. She still doesn’t look good, and the doctor who will be on call here is not familiar with Tia’s case. In fact we’re going to have to develop a much clearer protocol for treating Tia. The E.R. here didn’t know how to deal with her when Priscilla called, so Tia was in a lot worse shape than she needed to be when I got here.”
“Okay, bring her over,” Mike said.
The ambulance was nearing the Golden Gate Bridge. Priscilla was riding beside Sara. She appeared calm. She usually seemed to do well when Tia was at her sickest—as though emergencies brought out the best in her. Evelyn had pointed that out to Sara. Some people were like that. They always expected the worst, so that when it happened they were strangely prepared and almost at ease with it.
Sara touched the little face beneath her. Lately it had been increasingly difficult for Sara to deal with Priscilla. Tia’s condition was more and more upsetting; her episodes were worsening. This one was truly life-threatening. It was hard enough for Sara to cope with her inability to cure Tia. But Priscilla wanted so much for herself—so much intimacy and sharing. For a moment Sara looked over at the attendant riding with her and thought of her husband. She had met Tom in just this way—he had been an ambulance attendant when she was in medical school. Theirs was a close relationship, the only one she permitted herself to relax into.
Sometimes it was hard for her to leave her family in the morning. They weren’t going to have any more children; they had decided that after Elizabeth was born. Her career was of so much value to Sara and there was no additional time in her life to give to more children. She was straining even now with her job and her daughter. But what if something happened to Elizabeth? How did one bear it?
“Tia. Come on, Tia! Answer me, Tia.” Sara bent and stroked the cold forehead.
Tia’s eyes opened then.
“Hi,” she said.
10
It was almost 10:00 P.M. on Sunday, October 17, when Evelyn received the phone call at home. Only 36 hours earlier she had examined Tia, who was about to be discharged. But now the child was apparently in trouble again.
Evelyn rushed to the hospital, arriving just as Mrs. Phillips drove in. They met at the elevator, and there Mrs. Phillips handed over her daughter.
Evelyn realized immediately that Tia was in very serious condition. If she didn’t get a needle into the child within fifteen minutes, she’d lose her. Tia’s peripheral vascular system was shutting down due to fluid loss from massive diarrhea and vomiting. She was in shock.
Evelyn worked quickly. Tia was totally limp and unresponsive on examination and her extremities were cold and blue from poor circulation. Her skin turgor was markedly decreased—another sign of dehydration. Her weight was down half a pound since yesterday, when she had been discharged from the hospital. Raising her eyes to heaven at her good fortune, Evelyn managed to get two IVs started and then ordered fluids pushed at the rate of 12,000 cubic centimeters per meter squared per day. Good God, she had never set a rate that high! she realized. But that was the rate Tia needed; her fluid loss was so critical.
At least Mrs. Phillips was calm, Evelyn thought. She was not shrieking or demanding emotional support for herself. Evelyn was scared she might lose Tia. But Mrs. Phillips said nothing: she just stood at the bottom of the bed and watched, silently letting Evelyn work.
By eleven forty-five, Tia was improving. Her color had returned—her toes were now pink instead of the dull blue of circulatory collapse. She was attentive. Evelyn ordered serum electrolytes.
The results came back from the lab after midnight. Tia was very irritable, and looking at the electrolyte levels, Evelyn could see why. She had a sodium level of 170—an excessively high level—and a low potassium. Where was she getting all this sodium? Did this kid have a salt mine in her body or something? Evelyn wondered. Tia continued to pour out stool at an amazing rate. Another sodium test at 2:00 A.M. came back a still high but decreasing 160. But the losses were massive—no other way to describe them, Evelyn realized. By 6:30 the next morning, Tia had passed more than a liter of stool and vomited another 55 cubic centimeters. Evelyn calculated the replacement. She had already pushed almost 40 ounces through the IV just to keep up! But Tia was coming out of it. By 7:00 A.M. she was stable and asleep.
Evelyn looked down at the pale little face. You made it, she thought. You’re a tough little lady and you made it.
But would she make it through another one? These episodes were coming closer together now, and each was more severe. Evelyn remembered the one last month. Despite being made NPO, Tia suffered huge losses which continued for four days. The child had tested positive for viral meningitis that time, too, which was untreatable but fortunately not serious. And she had almost continuous hypernatremia—with that blasted sodium just hanging up there sky high, Evelyn recalled. Evelyn had finally ordered a sodium on Tia’s stool—the first time she had ever requested such a test. She had felt they needed a total balance study to see if the expected levels of sodium and potass
ium in the stool would correlate with the blood electrolyte shifts. But the results had made no sense. Tia had had two stool samples collected and tested, one at midnight and the other an hour and a half later. The first had come back from the lab with a sodium reading of 166 and the second with a reading of 198. This extraordinarily high level was inexplicable—and particularly when a blood sodium level drawn at 2:00 A.M. came back with a reading of 171—lower than the stool! If all that sodium was still concentrated in the blood, how could so much be coming out in the stool? Evelyn had chewed on that. It didn’t make sense, and it certainly didn’t help her to decide how much sodium to replace through IV fluids. So she had just discarded the data as useless.
Later Sara had discussed these confusing stool sodiums with Mike Applebaum and reported her conversation to Evelyn.
“He said stool sodiums should be in the sixty-to-eighty-milliequivalent range,” Sara said. “He felt the higher level implicated secretory diarrhea.”
“What treatment did he suggest?”
“Cholestyramine for the diarrhea. Then he said to repeat abdominal and skull X rays to look for calcification to rule out a tumor. But the X rays were normal.”
“You’re just not getting anywhere, are you?” Evelyn said. Sara sighed.
“No.”
By now Sara was calling on experts all over the country to help with a diagnosis. She had contacted Dr. Sunshine at Stanford at the end of September and told him of Tia’s persistent problems. The specimen of vasoactive intestinal peptide (VIP), which was a secretion released by a pancreatic tumor, had unfortunately been lost by Stanford, Dr. Sunshine reminded her. Perhaps another VIP specimen could be collected. This suggestion jibed with that of another expert Sara telephoned, Dr. Larry Finberg of Montefiore Medical Center in New York.
Of course they were all exhausted by this case. There wasn’t one of the pediatricians who hadn’t treated Tia when she was in one of her life-threatening episodes, who hadn’t experienced that frightening, pit-of-the-stomach knowledge that if they couldn’t get the needle in and couldn’t calculate exactly the replacement fluids and weren’t awfully careful with this tiny fifteen-or sixteen-or seventeen-pound patient, she was going to die on them. Since her last hospitalization in August at Kaiser-San Francisco, she had been admitted to Kaiser-San Rafael on five separate occasions. It had reached the point now where it was almost more frightening for the staff when Tia was not hospitalized than when she was. When she was out there somewhere, she could come in at any moment in critical condition, and they had no control over it. At least when she was hospitalized, there was a semblance of control. And it seemed as though Tia was always in the worst shape when she was admitted from home, like tonight. It was just another one of those strange things about this case Evelyn was thinking as Sara came on the ward to relieve her.
“How is she?” Sara asked.
“Better. But it was a rough one,” said Evelyn. Sara touched her shoulder and Evelyn smiled in return.
“Hang in there,” Evelyn said.
11
Steve stood with his back to the wall in Kaiser-San Francisco’s Waiting Room. It had been about an hour since they had wheeled Tia into surgery. There has to be some kind of word about her condition, he thought.
Sara was pessimistic. “I think it’s unlikely we’re going to find something,” she’d said. “A laparotomy is basically exploratory surgery. But there’s a possibility there’s a tumor in there. We’ve had some slightly abnormal readings on Tia. Dr. Burnip feels that in particular Tia’s VMA is elevated for a child. It’s not very high at all, but there is a possibility that it is due to a tumor, probably of the adrenal. The surgeon is going to do a thorough search—I don’t want you to be shocked by the length of Tia’s scar—it will run from the base of her breast bone all the way to the pubic bone. If there’s anything there, Dr. Mogen will find it.”
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.”
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