I first met Ski in 2000. He apparently had been seen in a small hospital in upstate New York for complaints of leg pain, with his left leg worse than his right leg. The pain was present even at rest. Testing revealed that he had a large aneurysm of his abdominal aorta and severe blockages of the arteries in both legs. The aorta is the main blood vessel from the heart to the rest of the body. It runs from the chest all the way into the abdomen, where it branches into two major leg arteries, one for each leg. An aneurysm is a weakening of the wall of an artery, causing it to balloon out and, if not corrected, potentially burst. As Ski put it, “This was way out of the league of the doctors there and they recommended me to go to a large teaching hospital.” Ski did his research and he chose to see me. I’m very glad he did because his story is one of my most moving and rewarding clinical experiences.
I am a vascular surgeon, specializing in problems like aortic aneurysms and artery blockages. At my first visit with Ski and his wife, I learned that his aorta was not the first blood vessel he had problems with. In 1995 he had a right-sided stroke that left him mildly debilitated. In 1996 he had a heart attack. That’s when he finally stopped smoking.
Ski and his wife jokingly told me recently that they clearly remember that our first meeting together was in 2000 because “They were both non-Y2K compliant.” In that one year, she was still caring for him after his stroke and heart attack, his leg pain heralded his severe aortic aneurysm and leg vascular problems, and she was diagnosed with uterine cancer! How much more “noncompliant” with good health can a couple be?
What followed was a long series of surgical interventions for a man who had extremely limited blood supply to his legs and, by all expectations, would likely become an amputee regardless of what we tried. I first repaired his large abdominal aneurysm by removing the diseased portion of the aorta and re-
placing it with an artificial graft, a tube made of Dacron material. The graft, like the aorta itself, branches into two tubes, one for each leg. But the leg arteries were also diseased, the left side critically blocked and the right side on its way. I then did a bypass procedure on his left leg with another graft attached above and below the blockage, allowing blood to flow from his aorta to his entire leg despite the obstruction in his natural artery.
Unfortunately, this was not the end of his leg problems. Following surgery, he initially did well but then developed left leg swelling resulting from the reestablished blood flow into tissue that had been weakened or damaged from years of inadequate blood supply. The swelling caused what’s called a compartment syndrome of his left calf, which threatened the survival of that leg—the pressure of the swelling inside the tight spaces of the calf can cause blood vessels to clot off and nerves to be damaged. We had to perform an emergent procedure to save the leg. We made two long incisions, one on the inner aspect of his calf and one on the outer aspect, to open up the four compartments in his calf that were under dangerously high pressure.
More trouble. Ski subsequently had serious infections with very difficult-to-treat bacteria underneath one of the incisions. The wound wouldn’t heal and the germs burrowed down to infect the major bone in his lower leg. Infectious disease specialists recommended amputation for this non-healing wound with underlying bone infection. Ski, his wife, and I had long discussions of the best approach to take, the best decision to make. Understandably, he was very much against amputation, hoping instead for recovery after long-term antibiotics. But severe and resistant infections like this can spread from the leg to the rest of the body and be life-threatening. We all held our breath and decided together to stay the course for a while, observing him extremely
closely and deferring amputation until it was clear there was no alternative. We would not let his leg infection kill him—but Ski made it clear that anything short of that was worth the risk of trying to save his leg.
I was out of town for a meeting when Ski developed a fever suggesting potential spread of the infection from the leg to the rest of the body. My covering surgical partner saw his leg and immediately began preparations for an above-the-knee amputation. Ski refused, saying he wanted to wait until I got back to decide. When I did return, we again together chose to continue his aggressive antibiotic treatment and wound care, including frequent surgical removal of dead or dying tissue. His fever and other signs of infection resolved, but we still weren’t sure his leg was salvageable.
After eighteen days in the intensive care unit and fifty additional days in the hospital, he was ultimately fit enough to be sent home to the care of his wife. She diligently performed his wound care three times each day and I saw him as an outpatient every six to eight weeks. He remembers me tell-ing him that the wound would have to heal “cell by cell.” Indeed, there were times when it certainly seemed as if that wound would be there forever. Ski relied on his affiliation with the Veterans Administration to obtain his wound bandages and dressings, which he estimated would have otherwise cost him $100 per day.
After many, many months, the infected calf wound ultimately began to shrink in size and close, but there was a persistent drainage hole that seemed to refuse to heal, indicating deep infection might still be present. That concern precluded him from undergoing a left hip operation that he needed for yet another vascular problem in his hip joint that also threatened his ability to walk.
It took Ski’s wound six years to heal completely. He ultimately underwent a successful left hip replacement and can walk freely, albeit with the slight aid of a cane. His blood vessels continue to challenge him. Several years ago I performed a right leg bypass procedure when the blood circulation to that leg reached critically low levels, again threatening the need for an amputation. Thankfully, this right leg surgery wasn’t accompanied by any of the problems he had with the left side.
Ski now spends the summer with his wife in Groton, Connecticut, preoccupied with his lobster pots and fishing, his favorite avocations. He and his wife winter in Sarasota, Florida, and recently celebrated their fiftieth anniversary together. They enjoy the company of their two grandchildren, who are grateful for having mobile grandparents.
To this day, everyone who participated in his care marvel when they see him walking into clinic under his own power, some calling it “miraculous.” After all, he’s walking on legs which, by all accounts, shouldn’t be there at all.
Date of event: November, late 1990s
A Family’s Prayers
Sandra L. Friedman, MD, MPH
Anna was a seventeen-year-old residing in a pediatric skilled-nursing facility because of extensive medical needs that made home care impossible for her mother. Anna had profound intellectual dis-
ability and cerebral palsy. She couldn’t speak or walk, and she was dependent on others for all her activities of daily living. She required multiple medications and treatments for chronic breathing problems and a seizure disorder. She had to be fed through a tube in her stomach, and she slept with a special machine to help keep her lungs inflated.
Despite all these medical needs, Anna was an integral part of her nuclear and extended families and responded to familiar people with smiles and facial expressions. Her mother had emigrated from Southeast Asia and was very devoted to her care; Anna was her only child. When Anna contracted a lower respiratory tract infection and fever, she required antibiotics through her feeding tube. The first night of the infection, a nurse without extensive experience was doing the periodic checks overnight at the nursing home.
When Anna’s blood pressure began to fall, the physician on call was not notified by the nurse and no additional care was provided. At the change of nursing shift in the morning, Anna was found in dire straits, with a dusky color, not responding to verbal or physical prompts. Her vital signs were severely abnormal with a weak and rapid pulse, and a barely detectable blood pressure. Paramedics were called to the nursing facility, and they transported her by ambulance to a local hospital where she required a breathing
tube and breathing machine for stabilization. She was given fluids and blood-pressure stimulating medicines as initial resuscitation, but it was obvious she needed intensive care. She was again transferred, this time to a tertiary-care hospital.
Anna was admitted to the intensive care unit (ICU), where she was given intravenous antibiotics for presumed septic shock (blood poisoning), a condition in which multiple body organs are at risk due to widespread infection, as well as provided with continued support for her failing heart and lungs. An EEG (electroencephalogram, or brain wave test) was described as being “almost flat” with just barely detectable brain activity. The intensive care team recommended withdrawing support, as they believed her condition to be incompatible with life.
Anna’s mother was confused and distraught. Uncertain as to the best course, she did not want to give up hope, and she reminded her caregivers that Anna had pulled out of serious illnesses in the past. Indeed, in the past, al-
though others had questioned aggressive medical management for a young woman with such serious medical conditions then too, Anna had always recovered and returned to her baseline state of health. Her mother was concerned that withdrawal of support was being recommended too quickly in the ICU because of Anna’s severe disabilities. Anna’s mother felt that these doctors could not have known how important Anna was to her family, and she wanted the best medical care possible for her daughter. She was not ready to withdraw support.
Anna’s mother called family members and close friends from the surrounding area and different parts of the country to come to her bedside. When they were all assembled, they prayed together at the hospital for Anna’s recovery in a beautiful group service. I also found myself whispering under my breath, “Please don’t let Anna die,” as I knew how devastating it would be for her mother and family. With the support and encouragement of the gathered family and friends, Anna’s mother decided not to withdraw support and her daughter continued to receive care in the ICU.
Slowly, as if in answer to her mother’s predictions and prayers, Anna did recover. After a number of weeks in the hospital, she was able to return to the skilled nursing facility that had become her home; there she continued to recuperate. Remarkably—as if to remind us of how little we know as physicians sometimes—some months later Anna was actually functioning at a higher level than she had been prior to her illness.
Of all the health crises Anna had in the past, this one was by far the worst. Yet her outcome found her in better condition than before the latest illness began. Not only had none of the medical providers predicted she would survive, but we certainly couldn’t have imagined her reaching a higher level of functioning than before. Anna would always have significant disabilities; however, she returned to the treasured place she held in her family just a little better than anyone could have dreamed.
Since that time, I have always wondered whether that prayer group turned things around for Anna during those dark days of septic shock. It certainly felt like a miracle to those doing the praying.
Date of event: 1986–2012
Don’t Feel Sorry for Samuel
Stephen Ludwig, MD
Sarah had died. She was a one-year-old with a rare metabolic bone disease that left her chest cavity malformed and prone to the failure of her ability to breathe. It was a tragic event for her mother and father, young parents filled with hopes and dreams for their baby daughter. They and little Sarah had fought a valiant fight but neither they, nor their doctors, nor the best that medical science had to offer, was able to help.
Shortly after Sarah’s death, the parents called to say that they were expecting another child. They knew Sarah’s disease was genetic but they were moving forward to build their family. I was happy for them but cautious, knowing that tragedy might strike a second time. The parents went for their prenatal checks and, despite their optimism, got the diagnosis they dreaded most. Examination of the fetal bone structure confirmed that the baby in the womb was also affected with the same rare and debilitating genetic disorder. Sarah’s parents came to see me to discuss what we might do to try to avoid the same one- to two-year life expectancy predicted for this child, a boy. Had they considered an abortion? That was out of the question as it violated their religious beliefs, and their hope was that perhaps this infant would not be so profoundly affected. They would see the pregnancy through, and I agreed to do my best to support them.
Unfortunately, Samuel was born with the full, terrible manifestations of the metabolic bone disease. He had a dwarfed size and multiple bony abnormalities that gave his body a deformed appearance. Nonetheless, he had an alert face and bright eyes. Seeing him I could only think of the sister he would never know and wonder how a family could possibly live through the same trauma twice and still survive emotionally. I searched the literature, desperate to find someone in the world—a potential expert—who had treated this condition more successfully than we had for Sarah. One researcher from St. Louis had some ideas and we attempted a series of transfusions to restore the missing genetic material that caused Samuel’s defects. The treatments failed. Due to his deformed chest wall, Samuel had more and more trouble breathing on his own. He was destined to die. Just like Sarah.
Meeting with the parents was painful and at the same time inspirational. They were such good folks and so willing to do anything to save their son. The question of a tracheotomy procedure (inserting a tube directly through the skin of the child’s neck into his windpipe) and mechanical ventilation (breathing with the aid of a machine) came up in our discussions. They had seen this during the times they spent in the pediatric intensive care unit with Sarah. I had great misgivings, grave doubts. Ethically, was this the correct thing to do? Samuel would be tied to a breathing machine forever—however long that would be for him. Medically, was this the right thing to do? It was one of those decisions that you lose sleep over as a physician. What was the right thing to do for the child? For the parents? But as time passed, their resolve was strong. They wanted to move ahead and not risk Samuel’s life; they felt they needed to do everything they reasonably could. They assured me they could handle it, and I agreed to support them in any way I could. I thought perhaps he would live for two or three years longer than his sister and they would have at least that much time together as a family.
The miracle unfolded over the years that followed. Samuel adapted to his tracheostomy (the tube now permanently in place in his neck) and his ventilator machine. Those bright eyes of a baby became the interactive smile and verbalizations of an infant and toddler. The family was incredible in their care of the child. His room at home looked like a mini intensive care unit. His parents knew how to manage many of the myriad nursing duties, and they had the additional help of skilled nurses visiting their home. The mother always knew where to find me in the case of questions or concerns. With all of this love and attention, Samuel rarely needed hospital admission.
As he matured, Samuel went to school with his electric wheelchair and his portable ventilator. He developed the ability to speak “around” his tracheostomy by managing an increased airflow to his lungs. As he attended his normal grade I began to see how right the parents were in their decision. He had intellect, wit, and a delightful personality. The kids in school graciously accepted him.
The family traveled with him, took him to sporting events, concerts, Disney World, and other fun places. As he got older, he was attracted to girls in his class and was a “groupie” for several of the female “rock stars,” hanging out with the most popular girls, who enjoyed his company. He attended his senior prom and danced in his wheelchair. His life through high school was very normal despite a disease that was anything but normal. It was a very emotional moment for everyone when he graduated with his class.
Samuel lived to be twenty-five. He broke all longevity records for children with his disease. But more than long, his life was full in so many ways. Was it a miracle or just amazing care from his
family? It was certainly a miracle in the eyes of his family—and a blessing; his parents did not have other children. His life touched so many others of us as well, for whom his life was also miraculous. For me, it was an honor to have been part of such a miracle.
Once, at a Phillies baseball game, his wheelchair was parked in the handicapped section next to a child who was profoundly developmentally delayed. Samuel said, “I feel sorry for him.”
“Why?” I asked.
He replied, “Because he can’t tell his mother that he loves her.”
11
Silver Linings
Physicians are painfully aware of how often our best hopes for our patients and their families fail to materialize. Tragedy is, unfortunately, a fact of life in the practice of medicine. In the midst of some heartbreaking events, though, a redeeming and rejuvenating spirit emerges to help us through the sorrow.
For the essayists in this chapter, silver linings appeared in the darkest of clouds, giving them reason to carry on and helping them realize that not all miracles are physical or tangible.
Date of event: 1989
The Miracle of a Single Question
Andrew Sirotnak, MD
As a first-year pediatrics resident (physician-in-training) at a large medical center on the East Coast, I was doing my final block of time in the neonatal intensive care unit (NICU). I’ll always remember it was the week after the huge Loma Prieta earthquake in California—the one that happened during a live World Series broadcast and changed the land-scape of so many people and places for the decade to follow. I had no way of knowing I was about to experience my own personal earthquake.
Miracles We Have Seen Page 31
