A Mother's Trial (15 page)

She had been doing so well, Sara thought. At least for Tia, she had been well. After the solid food had been offered to her over in San Francisco, she had begun to improve. Mike Applebaum had been amazed. He had gradually increased her feeding, giving her banana as well as rice cereal. And then Mike had put her on the milk-based 60/40 formula, which was a risk because she was probably allergic to milk. But she had continued to improve, her weight rising by half a pound, then a bit more, till she reached seventeen and a half pounds, the highest ever. Mike permitted Priscilla to take Tia home on passes. Finally he discharged Tia on July twenty-eighth. Priscilla had called Sara, brimming with the news.

“She’s coming home! My God, can you believe it? After five months, she’s coming home!” she had screamed. Sara had smiled into the squeals. Please God, let her stay a while.

But at Tia’s first post hospital check, Priscilla reported some problems.

“Three days ago she ran a fever of a hundred three and vomited and threw up three times,” she said. “But it was gone in twelve hours.”

Sara’s examination revealed nothing other than the chronic diarrhea—but that had become normal for Tia. Tia seemed happy and at nearly fifteen months, almost ready to walk. Her weight had increased to eighteen pounds, four ounces. Priscilla reported her vocabulary at fifteen words.

“Let’s advance the feedings and increase the time between them,” Sara said. “Call me if there are any problems.” She knew that eventually there would be. Because whatever Tia had, they weren’t coming close to finding it. And Sara was at her wit’s end. They had pretty much exhausted their diagnoses. It wasn’t viral gastroenteritis. It wasn’t an inability to digest sugar. It wasn’t parasites. It wasn’t an inflammation of the bowel lining. It didn’t seem to be secretory in nature, but that could not yet be ruled out. She had ticked off the negatives.

The positives didn’t tell much either. Tia’s episodes did seem to be triggered—sometimes, at least—by infection, but there was nothing wrong with her immune system. They did seem to be affected—sometimes—by intake, but changing her intake yielded unpredictable results. They did produce—sometimes—electrolyte abnormalities, and in particular, hypernatremia. But the abnormalities and high sodium levels might be explained by the fluid loss itself. At best these symptoms occurred intermittently. Nothing was consistent. Nothing quite fit together. Sara knew that she—and now Mike Applebaum—were beginning to clutch at straws. Yes, Tia was at home. But nobody except Priscilla thought it would last.

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 potassium 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.”