By Stephanie McCrummen
Washington Post Staff Writer
Monday, June 27, 2005
At some point last week, the people at Virginia Hospital Center gave Jason Torres a chair that reclines fully so he could more comfortably sleep by his wife's side, which was "pretty exciting," he said, mustering the best attitude he could.
This was the 46th day, which was very much like the 45th day and the 44th: Susan, his 26-year-old pregnant wife, lay in her hospital bed in Arlington, brain dead, and thus by Virginia law dead, yet attached to a ventilator, IVs, tubes and monitors in the slim hope that her body could sustain the fetus at least two more weeks before cancer reached her womb or her body just quit.
Doctors checked in -- the neurologist, the internist, the perinatologist, the neonatologist, the oncologist, the doctor for nutrition, "all sorts of doctors," said Torres, 26, of Arlington. "You know, the post-op doctor, everything."
By Friday, he said, life and death seemed in a tie: The melanoma had spread to Susan's lungs, but the fetus had grown, too, and even kicked.
In the week since Susan Torres's story became public, a relative handful of people have said it is demeaning to use her body as an incubator. Some have questioned the enormous amount of money being spent on the thinnest of hopes or cited Jason Torres's financial predicament as one more example of an inadequate health insurance system.
Others have simply helped Jason Torres with his share of the bill, which he estimates at $300,000 or more: About $175,000 has poured in so far, $15 checks from down the street, an anonymous $15,000 one, dollars from across the country, Canada, England and Australia.
Mostly, though, the case has been notable for its rarity, for its medical complexity and for its lack of ethics controversy. Seasoned doctors who discuss those matters finish by saying that the case of Susan Torres is just plain sad.
"Personally, if I were in the position of the husband, I think this is exactly what I'd want done, because your wife is not suffering, and I don't think it's demeaning," said Robert E. Harbaugh, chairman of the neurosurgery department at Penn State's Milton S. Hershey Medical Center and spokesman for the American Association of Neurological Surgeons. "I don't think that's the case. I just think it's tragic."
From an ethical point of view, some of the big questions were answered three days after a cancerous tumor at the top of her spinal column, a melanoma, began bleeding and felled Susan Torres on May 7. She was about four months pregnant with their second child. Her doctors have declined to comment, but Jason Torres said they determined his wife to be brain dead, which, according to widely accepted laws in Virginia and other states, means that she is dead.
The question became whether to try to keep her body functioning with machines so the fetus could grow, an ethical scenario akin to organ donation, said Robert M. Veatch, a professor of medical ethics at the Kennedy Institute of Ethics at Georgetown University.
In this decision, he and others said, it is Susan Torres's desires and values, as expressed by her or as divined by her husband, that are given the most weight, in light of the fetus's chances of survival.
Jason Torres said he struggled a bit initially. A Catholic, he prayed to God and yelled at God, which he still does and figures is all right, "as long as there's a dialogue." Ultimately, he said, there was no question that his wife, who converted to Catholicism and who had refused early pregnancy tests for birth defects, would have wanted to continue despite the risks to the fetus.
And so, a rare medical drama -- only 11 similar cases have been reported since 1979 -- began to unfold.
Even without the complication of cancer, sustaining Susan Torres's body is an enormously difficult task.
With no brain function, she has to be hooked to a ventilator to breathe, which in turn keeps her heart pumping and blood circulating to her vital organs, most importantly the placenta. She must be given nutrition and hydration intravenously. A catheter must be used to eliminate waste. Although it has not been an issue in Susan's case, blood pressure can become a problem: too low and the fetus may not receive enough oxygen and nutrition; too high and the placenta can separate from the uterus.
Over time, the treatments themselves can become problematic: All the openings for tubes offer bacteria a way in, raising the possibility of infection. Simply lying in one place can cause sores as soft tissue breaks down. Susan Torres has already fought off one attack of pneumonia.
"It gets harder because of the nutritional issues, because of the integration of systems required to maintain blood pressure, oxygenation, tissues. We just can't control all that in an ICU," said Elena Gates, a professor of obstetrics, gynecology and reproductive science at the University of California at San Francisco, who co-wrote a paper on maternal brain death during pregnancy. "As things go along, your systems start to fail -- the kidney, the liver, the pituitary glands -- and the heart is sensitive to changes in electrolytes, calcium, potassium, so you might see more problems with heart function."
Then, of course, there is the cancer: melanoma, which is particularly insidious in that it is one of the most aggressive forms and one of the few that can penetrate the placenta.
Susan Torres's melanoma had been diagnosed when she was 17, when she had a malformed freckle on her arm, but after it was removed, doctors believed she had no reason to worry.
Apparently, however, the cancer cells remained dormant in her body all these years, and, for reasons scientists spend their entire lives trying to figure out, they became active, eventually, with only the faintest of symptoms -- headaches and nausea -- forming a tumor at the back of her neck.
"It's not a situation where I'd say, 'How did that happen?' " said David H. Lawson, a professor of medicine and melanoma expert at Winship Cancer Institute at Emory University in Atlanta, explaining that doctors probably were not at fault for missing it. "No, I see very well how that could have happened."
The melanoma has metastasized, the cancerous cells traveling through Susan Torres's bloodstream, searching for a place to grow. So far, they have found the lymph nodes under her arms and, last week, her lungs.
Lawson said there is no strong pattern to where the cells tend to plant, although typical places are the skin, the brain, the lungs and the liver.
It seems less common for the melanoma to grow in the placenta, and a 2003 study in the Journal of Clinical Oncology found that of 27 cases where metastasis melanoma reached the placenta, the fetus was affected in just six cases; in five of those six cases, the infants lived 12 hours in one case, two years in others.
"The baby, to a certain extent, has an immune system that is distinct from the mom," said Lynn M. Schuchter, an expert in melanoma at the University of Pennsylvania. "So it's possible if foreign cells arrive, the immune system can handle it."
Although pregnant women can handle chemotherapy, there is no good chemotherapy for melanoma, Schuchter said, and radiation would harm the fetus.
The situation is made even more difficult because there is also no way to tell with certainty if the melanoma has reached the placenta or the fetus, which Jason Torres saw on a sonogram Thursday, appearing healthy and kicking.
If his wife's body holds out until the fetus reaches its 25th week, the earliest point at which doctors believe a premature baby has a decent chance of survival, Torres is inclined to keep going.
"I think even if there's the chance, we'd want to go on as long as possible, because if you take the child early, you know there's going to be problems," he said the other day. "If you leave the child in the womb, there may be problems. That's not necessarily the medical view of it, but that's my view of it."
Down the road, there may be some novel insurance questions to consider, said Justin Torres, Jason's brother, who is handling much of the logistical details.
Susan Torres, who was a contract researcher with the National Institutes of Health, is the guarantor on the policy, which is with Strategic Resource Co., recently bought by Aetna. Although, technically, coverage lapses when the guarantor dies, Jason Torres is continuing to pay the premium.
"I think they're very generously cutting us a break," Justin Torres said of the insurer. "What will happen later" with the potential cost of neonatal care, for instance, "we don't know."
There have been moments over the past week when his brother regretted talking to the media, Justin Torres said. It is difficult for the family to hear the words "dead" and "brain dead" over and over. But they realized that they have traded privacy for the possibility of help.
And so on the 47th day, Jason Torres answered his cell phone, machines beeping in the background. "I'm kind of tired," he said from his wife's room. "I've been doing a lot of interviews, but for the most part, I'm just plodding along." Then he had to go, as another doctor walked in.