Miracles We Have Seen

by Harley Rotbart

  Unfortunately, four days after going home he came back to the hospital extremely ill with right-sided heart failure, caused by a recurrence of the profound obstruction in his upper airway. Again, we gave continuous oxygen supplementation through a tube in his nose, but whenever we tried to stop the oxygen, he deteriorated. We knew that without doing something dramatic, this child would die. The only remaining approach was to surgically bypass the obstruction in his nose and the back of his throat with a tracheostomy, a breathing tube placed through the skin of the neck directly into the windpipe.

  A tracheostomy is a major procedure and a big step for any child. For this child with AIDS, it presented even greater challenges. In 1996, our knowledge and practice of precautions to prevent the transmission of AIDS to hospital workers were also in their early stages. Surgeons were not eager to operate on patients with AIDS, and nurses were not eager to care for AIDS patients with lots of secretions to handle. A patient with a tracheostomy will not only have a bloody surgical wound, but will also require frequent suctioning of respiratory secretions through the tube in his neck. Suctioning can result in sprays of secretions—in an AIDS patient, those secretions may be infectious. In those days, nurses and doctors weren’t even routinely wearing protective eyewear and masks in the intensive care unit where this child would be cared for. And tracheostomy would only be a temporary solution at best—it would not reduce the upper airway obstruction, and would require prolonged hospitalization for management; he could not be sent home with a tracheostomy.

  To quell the growing objections to performing the tracheostomy, we “negotiated” with the nurses to give the child a course of treatment with the first anti-AIDS drug developed, called AZT (azidothymidine). As noted earlier, we did not have the resources to treat patients with AIDS, but we did have some AZT on hand to protect healthcare workers from needle-stick injuries. We made the case to the nurses that AZT would decrease the amount of virus in the child’s body, his blood, and his secretions, making handling him in surgery and afterward less risky for them. They agreed, and we began the child on AZT in anticipation of performing the tracheostomy procedure shortly thereafter. We had no expectation of a treatment effect of the AZT—we were hoping only to reduce the number of viruses in his body long enough to more safely do the surgery.

  However, to our utter amazement, almost immediately after starting the AZT therapy the little boy’s upper airway obstruction melted away. In fact, within a day, he was already much improved. We had never had an experience like this where a severe, life-threatening complication of AIDS disappeared with barely a “whiff’ of medicines. The tracheostomy procedure was no longer necessary, his heart failure resolved, and the child went home three weeks later on AZT therapy. Because of how stunning his recovery had been, and arguing that even expensive medicine was cheaper than surgery, we were able to convince the hospital to provide the child with AZT at home for six months. That’s how long therapy with a single anti-AIDS drug could be effective in adults. The hospital argued that providing expensive medicine for longer than six months would not improve the outcome. We saw the child twice in follow-up over the next four months and he looked well on both visits. After that, he didn’t return for further scheduled visits.

  We are not naïve enough to think he was permanently cured of his AIDS—that would be unheard of with only a short-term course of treatment with a single drug. We now know that we can repress the AIDS infection long-term with three simultaneously, and continuously, given effective anti-AIDS drugs. But for this child, on the doorstep of the operating room for a dangerous and controversial procedure, this dramatic improvement in the major symptom of his AIDS, the upper airway blockage, was a miracle. And, considering all the alternative worse outcomes we might have faced, we were thrilled to be able to make this little boy’s life a little better.

  As a sign of how early in the African history of childhood AIDS this “miracle” occurred, my colleagues and I published this case in the medical literature and it was the first ever documented case of treating a child with AZT in Africa. We subsequently tested a stored blood sample from the baby and found that he was also infected with EBV (Epstein-Barr virus), the virus that causes mononucleosis (“mono”). EBV infection is well known to cause enlarged tonsils, adenoids, and lymph nodes in children in the West, but it typically causes few symptoms in young kids, especially under a year of age. In this little boy, we concluded his AIDS infection made his EBV worse and caused his severe upper airway obstruction. By treating his AIDS infection with AZT, we allowed his body to control the EBV infection.

  This miracle was thankfully just the beginning of the miracles with anti-AIDS medicines, as the next case illustrates.

  Case Two

  Shortly after our experience with the little boy described above, a little girl born with AIDS infection developed one of the most dread complications of that disease: long-term, unremitting diarrhea. She had been on our hospital ward for more than six months, unable to gain weight, and continuously dehydrated. She required hundreds of painful needle pokes for intravenous (IV) lines that failed, or became infected, or simply fell out during this lengthy hospital stay. She was wasting away, unable to absorb food due to the severe diarrhea. The more she wasted and became dehydrated, the more IVs she needed, the more painful needle pokes, and the longer the hospitalization. Chronic diarrhea in AIDS babies is a vicious cycle of suffering, often ending only with death.

  I remember the mother of this child well. She was a lovely but very young woman, and a caring mother. She had AIDS and was, as is typical, the source of the baby’s infection. The baby also had physical findings suggestive of fetal alcohol syndrome, the result of her mom’s drinking during pregnancy. But neither the mother’s drinking problem, nor her own AIDS, nor her teenage youth stopped her from being a great mom to her little girl. The young mom’s own mother, the baby’s grandmother, was the cornerstone of this family and very involved in both her daughter’s and her granddaughter’s care.

  Because of our extraordinary experience with the earlier case, we convinced the hospital to allow us to treat this baby with AZT as well—arguing that anything that might allow this baby to go home would be a victory. Once again, as with the first case, this baby’s response to AZT was dramatic and almost instantaneous. Her diarrhea stopped, she gained weight, she no longer needed IVs or supplementary fluids, and she was able to go home. Her mother and her grandmother, who never thought their baby would be home again, were overjoyed. They proclaimed this to be a miracle. I proclaimed it as such also. The AZT didn’t cure her AIDS; in fact, she died several months later. But she died at home, without diarrhea, having had quality weeks with her family.

  Today, this baby would not have been born infected. Her mother would have been diagnosed with AIDS during pregnancy, treated with anti-AIDS medicines, and given birth to a healthy little girl. In the event the baby was born with AIDS today, perhaps because her mother’s diagnosis wasn’t made in a timely fashion, the baby would have been treated early with triple therapy (three effective AIDS drugs given simultaneously), and never would have developed chronic, unremitting diarrhea. But that’s today. In 1996, being able to send a child with AIDS home after six months in the hospital with diar-

  rhea was a previously unknown possibility. Without the first case of the little boy described above, we never would have been able to treat this little girl.

  Again, we were thrilled to have another miracle in its day.

  Triple therapy for AIDS didn’t become widely available in South Africa until 2004. Until then, as a result of the two “miracle” cases above, we successfully used therapy with a single drug as a stopgap measure in some of our toughest cases of childhood AIDS, reducing hospitalizations, reducing babies’ suffering, and improving the quality of life for these children.

  For more about using single drug anti-AIDS therapy in resource-poor countries:

  M Pijnenburg, M Cotton. Monothe
rapy in an era of combination therapy: is there a benefit? Experience in HIV-1-infected symptomatic South African children. Annals of Tropical Paediatrics 2000; 20: 185–192.

  Date of event: Early 1990s

  With a Little Help from My Friends

  David Spiegel, MD

  “I’ve had metastases to my brain three times,” Sheila told her support group of women with advanced breast cancer. “And each time I knew God would heal me. And he did. My doctors said, ‘You’re a walking miracle, all three times.” Sheila was indeed born again—in her faith, and, she was sure, through her faith. She took what anyone else would see as a terrifying defeat, a sign of serious progression of her relentless disease, and saw it as an opportunity for God to prove his love. She had been diagnosed with inflammatory breast cancer, a particularly aggressive type, at age thirty-two. Her breast went from acutely painful to completely discolored in three weeks. After consulting with a number of doctors, she elected not to have a mastectomy, but to have a full course of chemotherapy and radiation.

  “I could tell from the way the young doctors looked at me, they thought: ‘She’s dead meat, don’t get too attached. Use it as a learning experience.’ The first night I had chemo, I got deathly ill. My husband was there. I turned to him and said, ‘I can’t do this.’ I prayed to the Lord: ‘Lord, if this is the way it’s gonna be, just take me now.’ I never vomited again, I never got sick again. After that I had a lot people praying, a lot of support, family, friends. I came through it with shining colors.”

  I had just started my career in academic psychiatry with an extraordinary opportunity. A highly regarded group psychotherapist and renowned author at my institution had invited me to co-lead a new support group he had assembled of women with metastatic (where cancer has spread to other sites in the body) breast cancer. He was writing a textbook on existential psychother-

  apy, and was interested in the concept that you don’t really live authentically until you confront death, i.e., face the possibility of your own nonbeing. If that was true, as Kierkegaard, Sartre, and Heidegger had written, then perhaps dealing with life-threatening disease could be an occasion for growth, not decline. At the time, some oncologists thought we would demoralize these women by assembling them in a weekly support group. After all, the median survival with metastatic breast cancer then was just two years. The oncologists feared women in such groups would watch one another die, seeing the worst, not extracting the best from the experience.

  But to the contrary, we found the women in our groups formed strong bonds with one another, coming to see in each other what they had more trouble seeing in themselves: their courage and resoluteness in the face of punishing treatments and advancing disease. They came to feel like experts in living, giving one another advice about everything from getting test results early, to what to tell friends and family. And they learned to stare death in the eye.

  As one group member put it, “Being in the group is like looking into the Grand Canyon when you are afraid of heights. You know it would be a disaster if you fell, but you feel better about yourself because you’re able to look. That is how I feel about death in the group. I can’t say I feel serene, but I can look at it.”

  Sheila told the group, “My main objective was to help someone else regain hope, because you can get through it.” At the first meeting after a member of the group died unexpectedly, Sheila said with tears in her eyes, “I invested in her, I had feelings for her. I wish I could talk to her.”

  When I asked her, “What would you say to her?”

  Sheila said, “Not to worry. Not to fear. To have somebody there to tell you that, and that it’s okay, your family will be all right, and not to feel guilty for being sick, for dying on them. They will be okay—they will continue.” As she spoke, she was comforting the other members of the group in their grief for our lost member, and, of course, in their thoughts about their own mortality.

  Sheila seemed so certain. She was there to help others, and she showed so little concern about her own dire situation that it made me uncomfortable. Was it denial, a defense against existential terror? I was there to help these women using a psychotherapy that sought to guide them in expressing all the emotions associated with advancing cancer: anger, fear, and sadness, as well as to use those feelings to savor the sweetness of life and relationships, and to find meaning in whatever time we all had left. Was Sheila short-

  circuiting this process with her serene belief? Nothing ruffled her conviction, even another group member’s none-too-conciliatory statement that “I don’t believe there is any intelligence in this universe that cares one bit what happens to any of us.”

  Sheila later commented, “She was a downright atheist—in my face all the time—she almost ran me out of the room. She had a very strong personality. I almost let her do that to me, but I realized that wasn’t my purpose. My purpose was to stay. That was the whole purpose of the group—to express our feelings.”

  In order to see whether we were indeed demoralizing the women in our groups, we assessed the content of the group’s discussions in relation to the prevailing emotions minute-by-minute. We found that the specter of death powerfully influenced the depth of our discussions, but did not lead to an overwhelming negative mood. Indeed, we found that the more open the women were about all emotions, the more their anxiety and depression decreased over time, rather than increased. Sheila could talk about death, but didn’t seem to worry about it. Compared to other women in the group, who had metastases to their bones, which is painful, her condition was worse: the tumors had appeared in her brain. Yet she showed no sign of mental impairment, came weekly to the group, and her spirits were high. She was there to “help others.”

  Our group was part of a National Institutes of Health-funded study designed to re-evaluate the effects of group psychotherapy. In an earlier study we had recruited eighty-six women in all, and randomly (equivalent to the toss of a coin) assigned fifty of them to weekly support groups; the other thirty-six received their standard medical care without special emotional support. We followed them all over many years, and found that the women in our support program were better off emotionally, and had less pain as well. We taught them self-hypnosis for that.

  I got curious about one more outcome measure—how long these women survived. We had begun the project in the late 1970s, when books were being written about imaging away your cancer by picturing your white blood cells killing your cancer cells, and how people got cancer because of some deep emotional “need” for it. I felt this was blaming the victim, and that there was no evidence that such mental imagery or painful introspection could affect the course of cancer. In any event, we were doing the opposite in our groups: facing death and detoxifying the fear, not wishing the disease away. So in the late 1980s I obtained death records for all of the women in our study. Not surprisingly, by then eighty-three of the eighty-six had died. But what was astonishing to me was the fact that, on average, the women assigned to our support groups lived eighteen months longer than the controls who had not received special emotional support, while receiving the same type and quantity of medical treatment. By four years after the study had begun, all of the control patients had died, while one-third of the women in group therapy were still alive.

  We published that finding in a leading medical journal in 1989. Since then, eight of fifteen published randomized clinical trials have shown that psychotherapeutic support results in longer cancer survival, while the other seven show no difference. None of the studies show that talking about death shortens life. We did another study involving 125 women beginning in 1990 to confirm our results. Although we did not find a survival advantage for all of the women in the new study, we did find the same group therapy benefit on survival in those women with tumors that didn’t respond to hormone ther-

  apy. Breast cancer therapy had improved considerably over the fifteen years since our original study, especially hormonal treatments,
making it harder to demonstrate the improved survival effect of group psychotherapy. But in those women who didn’t benefit from the newer hormonal therapy, group psychotherapy could still be shown to improve survival. Indeed, an authoritative review in 2013 of all the literature in the field concluded that group therapy improves survival with breast cancer.

  The power of social support is further demonstrated by a recent population study involving 734,889 cancer patients showing that simply being married is associated with four months’ longer survival, equivalent to the effect of many kinds of chemotherapy. So living better also means living longer.

  Sheila’s faith was not misplaced. As she put it, “If I hadn’t had faith, I would have gone nuts. If I hadn’t had faith, I would have committed suicide. Looking back, my cancer was a blessing because it allowed me to reevaluate my life, what was important, who was important, get rid of all the deadwood relationships that were not sincere. With a disease like that your real friends hang in there, and the ones that were not with you are gone. I feel I am in the protective circle of his love. It doesn’t mean I don’t get depressed, but at the end of the tunnel, I’m okay. Look into his light, not to the left or the right, don’t get distracted by things that are hurtful.”

  While she is no longer with us, Sheila lived for twenty-four years after she joined the group, while the average survival time for women in the study was two and a half years. Just as she predicted to the others in her group years before, her family is okay. So are we, for having known her.

  For more information on our studies of group therapy’s impact on breast cancer survival, see: