Miracles We Have Seen

by Harley Rotbart

  As residents in the NICU, it was our job to attend complicated or high-risk deliveries to provide initial care for the babies in the delivery room. I was called to attend a routine caesarean section being done because labor had not progressed. The mom was reportedly in fine health. The obstetrician asked for coverage from the nursery staff because the baby’s heart rate had intermittently slowed down and there was concern that the baby might be born distressed. My supervising neonatologist (newborn specialist) was busy in a nearby delivery room with a set of twins who were quite ill, so I had to cover this delivery alone. This mom and dad were ready for the caesarean procedure and thought it would be like the one they had with their previous child.

  As soon as the baby was born, the looks on the faces of the obstetrician and the delivery room nurse quickly told me this was not a routine delivery, and this baby boy was not normal. The baby was brought to the warmer bed for me and a nurse to resuscitate. I immediately recognized the tragedy that was unfolding there. Although I had never seen a baby like this, he looked just like the pictures in the textbook. The little boy was hydrancephalic, meaning his brain never developed and his skull was, for all intents and purposes, empty. His large head was almost totally translucent, as if it had been hollowed out. Hydrancephaly is one of the worst conditions a child can have, and it’s impossible to survive from. It probably results from an interruption of blood flow to the fetus’s developing brain during pregnancy. Without blood flow, the brain shrivels and disappears.

  I knew this baby would die very soon. He already had severe breathing distress and was turning blue. The brain is very important in controlling almost all of a baby’s bodily functions once out of the womb. The nurse and I made the very difficult decision to temporarily resuscitate the baby until the supervising neonatologist could arrive and we could have a discussion with the parents. The neonatologist was paged emergently to the delivery room. Mom was crying out, asking why she didn’t hear her baby cry; Dad was asking to see his son. The nurse wisely asked the baby’s father to wait for a minute as we helped the baby breathe. She then asked for another blanket besides the one we had the baby wrapped in, a request I couldn’t understand until I saw her make a soft turban for the baby’s head. The nurse and I looked at each other and knew what was next.

  We called the baby’s dad over and he knew something was very wrong. As he looked at his baby, I saw his fear melt into resignation. I had no idea what to say. How do I explain this? What if I say the wrong thing? Why am I the one on call today? But somehow, from somewhere, came this question as I took the father’s hand and placed it over his son’s hand and arms: “What is your son’s name?”

  He looked at me and quickly said, “Joshua, we think. Yes, Joshua. Like the story of Joshua and the battle of Jericho.”

  I had already known this was a very faith-based family, and the name they chose seemed very fitting. I then proceeded to tell him that Joshua was ill and would likely not live through the day. I explained that I would do everything I could to help them understand why, and I asked that we move Joshua to the NICU so we could make his short life easier. Late that afternoon, Joshua died. His dad found me as I was getting ready to leave the hospital and asked me to stay with them. I was honored to be able to stay with the parents in the mom’s postpartum room, along with a large family who gathered to pray and comfort each other. They told me that my act of kindness—simply asking Dad his son’s name rather than launching right into bad news or medical jargon—gave the baby’s father strength to accept “what God had delivered to them,” and the strength to support his wife. They kept the turban blanket and it was buried with him that week.

  For me, my miracle was delivered to me that day by this family. I was a young doctor welcoming new life and then seeing the same life end in the span of less than a day. The family told me I had made some impact. This quiet, sacred, static moment came and went so beautifully. But it didn’t end there.

  Twenty years later, now as a supervising physician myself, I admitted a six-month-old baby from the emergency room with malnutrition, bruises, and overt neglect. His young parents had myriad issues, not the least of which were substance addiction, mental illness, and living on the street as transients. In the hospital, the baby recovered from his injuries, gained weight, and was going to be discharged to a foster home. On a Thursday morning before discharge, we invited the new foster family to join us for rounds with the baby’s caseworker to hear the discharge planning. They told us how they had lost pregnancies, failed to be able to arrange previous adoptions through social services, and had finally given up hope of being parents. I quickly took the pediatric intern, my trainee, aside and suggested what she should say to this family, including what one question to ask. I explained to the intern that this foster family was taking on a traumatized child with an unknown outcome potential, yet they were looking to us for hope. We were privileged as caregivers to witness the formation of a new family—just as we in the delivery room do with a new baby. With the rough start this child had, he might have significant issues and may not turn out well. Of course, I knew that sometimes new babies in the delivery room aren’t so perfect either.

  We gathered as a team with the foster parents over this little boy’s crib and started rounds. The intern began the discussion somewhat hesitantly, because the first question I had suggested she ask wasn’t by any means routine. She said, “We want to be the first to say congratulations on your new family member. We’re here to help you understand what his needs are now as you take him home. Most importantly, what do you think his name might be as you become his parents?”

  The baby’s future mom started to cry—as did I—and then she launched right in with questions about his needs and care after discharge. I later bought a baby book and a card signed by the team as a gift, and mailed it to the family. Later in the month, that intern told me this was one of the most meaningful experiences she had to date in her career as a young doctor. I challenged her to carry that forward, as I had from Joshua. I told her our humanity as physicians must be embedded in everything we do for our patients and their families.

  The new family successfully adopted the baby, and a year later adopted another son. Today, both children are thriving and happy. A letter of gratitude from the baby’s new grandmother is laminated in my office. It comes in handy when I am not at my best.

  Miracles are events that shock us with powerful awareness of something or someone other than ourselves, or other than the moment we are in at the time. That quiet, sacred, static moment that shocked me more than two decades ago as a trainee has never left me. To this day I call upon it and I try to pass it on.

  Date of event: 2003

  The Miracle of Purpose

  Dale S. Adler, MD

  I came home late. My wife, Nancy, kept me company for dinner, as always. Our kids were doing their homework. As we cleared the dishes, I spotted a bar mitzvah invitation on the kitchen counter. A set of twins. I did not recognize the names. Nancy caught my quizzical look at the invitation and said she also didn’t know the people or the kids, and she felt badly because someone was probably expecting an invitation and didn’t receive it. However, Nancy was puzzled by the fact that the invitation was clearly to us, at our address. She feared phoning the senders, only to be embarrassed if, in fact, we knew the family of the twins. I stared at the invitation, and I thought for a few moments. Then I said, “I think I know who this is.”

  I met Harriet when she accompanied her husband, Ernie, to a clinic visit in the early 1990s. She was in her mid-sixties and Ernie was in his very early seventies. He had a strong family history of heart disease, was a former smoker, had elevated cholesterol, type 2 diabetes, and an extra fifteen pounds resting comfortably in his abdomen. Harriet recalled that her father-in-law, who had a heart attack in his fifties, made Ernie look absolutely trim.

  About five years prior to this clinic visit, Ernie had a heart attack with-out w
arning involving the front wall of his heart. A cardiac catheterization test (injecting dye into the heart vessels to look for the cause of the heart attack) detected a blockage in the midportion of the artery that supplied the front wall of his heart. Unbeknownst to either Ernie or his physicians, and unapparent even on his EKG (electrocardiogram), the catheterization study also showed he already had a previous blockage of the midportion of the artery on the back of the heart. Ernie was staying alive on only one good heart artery, the large, dominant artery on the right side of his heart. He was taking effective medicines for his cholesterol and diabetes. Harriet said that her husband’s arterial blockages could be traced to his mother, who filled young Ernie with fatty brisket, chopped liver, and magnificent cream-cheese pastries, and imbued him with the idea that hunger should be avoided at all costs.

  Ernie loved to bowl, as did Harriet. They were a couple still very much in love. They had two married daughters, the older with a set of teenage twins; the younger, who married in her thirties, had no children thus far, much to the consternation and stress of both Harriet and Ernie.

  Ernie had no heart-related complaints in the clinic that day, but because of the potentially precarious blood supply to his heart, he underwent an exercise imaging test that showed what seemed to be a stable picture. Sadly, less than one year later, he died at the bowling alley. He had thought he was dealing with the flu for a few days, and he wondered if he had a subtle gastrointestinal issue. At bowling, he simply said he did not feel well, became profoundly sweaty, and collapsed. The emergency responders came quickly, but resuscitation attempts failed.

  Harriet came to the office as a patient herself soon thereafter. She was experiencing shortness of breath with physical exertion. She was still grief-stricken after Ernie’s death. I learned that approximately eight years previously, she had received an artificial aortic heart valve for severe aortic valve disease. The aortic valve controls the flow of blood from the main pumping chamber of the heart to the rest of the body; hers was found to be stenotic, or stuck. She was in the 1 to 2 percent of the population born with a two-leaflet, rather than a normal three-leaflet, aortic valve, and she was in the one-third of those patients who had trouble with her abnormal valve. By the time she was in her fifties, she was having chest pain and shortness of breath when she simply walked across a room. Because of her ineffective aortic valve, her heart muscle was forced to overwork, and it hypertrophied, or thickened, like any muscle would if asked to do extra work. The thickened muscle demanded more oxygen than could be delivered by the blood vessels in her heart. Her heart developed scars in regions where there was a mismatch between blood supply and muscle demand. Her heart muscle was not receiving enough oxygen.

  Harriet had a generally good result from the replacement of her heart valve eight years earlier. Her breathing improved and her chest discomfort disappeared. She was not perfect, however, for the heart muscle thickness only very slowly regressed. She was also not perfect because she was forty to fifty pounds overweight, had very significant high blood pressure and, like her husband, diabetes and elevated cholesterol. The weight, diabetes, and blood pressure all contributed to the thickness of the heart muscle and to the stiff blood vessels in her heart. They all also slowed any improvement of the thick muscle mass of the main pumping chamber of her heart. Though Harriet did not like to admit it, she actually ate as though she were being encouraged by Ernie’s mother.

  At that first office visit for Harriet as my patient, my examination of her provided rapid insight into this recurrence of shortness of breath, now eight years after the artificial valve had seemingly fixed that problem. There was an important leak surrounding her artificial valve. She had no signs of an obvious infection in her bloodstream that could be destabilizing the valve. She seemed to have the misfortune of what’s called late, insidious valve loosening. Put simply, she needed another open heart surgery.

  I should have known then that Harriet was no ordinary patient. At a lengthy re-operation, made difficult by severe chest scarring from the previous surgery, she was found to have an aged, infected, old suture (stitch). The infection was caused by a germ that usually doesn’t cause problems, but in Harriet had slowly, over several years, gnawed away at the tissue that supported her artificial valve and kept it securely in place. The fact that she had done well for years, with an ongoing subtle infection, was actually quite remarkable.

  After Harriet received her second aortic valve and a long course of antibiotics, her breathing improved again. But she was still not perfect. Nor was she even as good as she had been twelve months before the second valve. Her heart muscle was still thick and rigid due to the same factors as before. But now, in addition, she was experiencing complications of the second operation causing decreased suppleness of her heart muscle, the last thing that an already thickened, already rigid heart needed.

  At age sixty-eight, Harriet lived independently, walked at a deliberate pace to avoid shortness of breath, and had already been admitted to the hospital a few times for heart failure related to her diseased heart muscle. Worse, due to her diabetes and high blood pressure, her kidneys were no longer fully efficient at clearing her of excessive salt and water overload. She had what we now term heart failure with a preserved ejection fraction, and she lived in a tenuous balance with her heart disease and her kidney failure harming each other in a vicious cycle. Her three- to five-year prognosis was bad—there was a much greater than 50 percent chance she would not survive five years.

  After one of her several hospital stays, Harriet came to the office for a visit, and she had not a hint of discouragement over the need for her recent hospitalization. Nor did she lament her recent stay at a rehabilitation facility, where the food was never to her liking. Harriet was beaming. She told me that her younger daughter, the one who was previously childless and now in her late thirties, was expecting twins. “How wonderful!” I said.

  Harriet filled me in on more details, saying, “ . . . a boy and a girl, and the boy will be named for Ernie.” I told her that I was thrilled for her, that she would have something wonderful to look forward to, and that she would really need to take good care of herself so that she would be able to enjoy the birth of these grandchildren. Harriet told me that I, her cardiologist, needed to take good care of her. I said that of course I would try. She said she didn’t mean take care of her just over the next few months until the twins were born. She said that I had to take care of her so that she could be at their bar mitzvahs.

  Inside, all my pleasure at seeing Harriet so uplifted quickly evaporated. The likelihood that Harriet could survive even to the twins’ consecration, a ceremony marking the beginning of their Jewish education on their fifth birthday, was low. To survive to the twins’ thirteenth birthday? With the severe heart and kidney impairments she had? Almost unimaginable.

  The twins were born healthy and they gave Harriet a wonderful ground-ing. She told me how the boy named for Ernie was quiet, but a thinker, and bright. The little girl was also bright, but more mischievous. Harriet was exhausted on days that she babysat the children, who slowly grew into toddlers and were then even more exhausting.

  Unfortunately, as feared, Harriet’s medical condition was unrelenting. She had more frequent hospitalizations. She was part of the earliest hospital efforts to prevent readmissions by having home health visits several times weekly, and she even participated in an early version of telemonitoring. Harriet’s medical condition was so dramatic, and instructive to doctors and doctors-in-training, it was presented at a hospital-wide conference as an example of the high cost of heart and kidney failure. The costs were not just financial—her illness took a tremendous physical and emotional toll. Her office visits became less frequent, but hospital admissions, including admissions to the intensive care unit, with the need for temporary placement on a breathing machine, became more frequent. Harriet was asked, as we do for all patients as severely ill as she, if she would want to be resuscitat
ed if her heart stopped. She always answered, “Of course, I have to be at my twins’ bar mitzvahs.”

  The years crept along. Harriet had to initiate dialysis for her failed kidneys, but she did so without complaint. She weathered a series of scalp operations for skin cell cancer. She lived through a severe hemorrhage (bleeding episode) that occurred when she critically needed dental work. She did not talk about her illness. She spoke about her twins. She was so proud of them. They were excelling in school. They were actually about to start their one-year-long bar mitzvah preparation lessons.

  I think back upon the night I spotted the bar mitzvah invitation. Yes, one of the twins’ names began with an E. I knew exactly who these people were. I told my wife the story of Ernie and his tragic demise, and of Harriet, who had looked forward to these bar mitzvahs, through extraordinary health vicissitudes, for more than twelve years. These were the bar mitzvahs that gave her life and gave her purpose.

  We joyfully attended the twins’ joint bar mitzvah ceremony, and it was a spectacular event. Harriet looked radiant, though frail. She was in a wheelchair, and she was now twenty pounds underweight. She had a beautiful wig and a wonderful pink dress. With the aid of a walker and an attendant, she stood and spoke to the gathered guests. She professed her love for her entire family. She remembered Ernie. She remembered the birth of the twins, and she remembered her vow—repeated many times—to see her twins have their bar mitzvahs. The twins talked about what they learned from a willful, loving grandmother.

  Three weeks after the bar mitzvahs, her purpose fulfilled, Harriet died quietly at her assisted living facility.

  Date of event: 2006

  The Thin Line Between Miracle and Tragedy

  Robert J. Buys, MD

  The dawn brought the beginning of the day we had worked so hard for, the culmination of a long and arduous journey to achieve a goal we once felt was out of reach. It was September 2006 on the island Kingdom of Tonga, located deep in the South Pacific. We were at last set to perform a series of operations known as pars plana vitrectomy, a procedure in which the fluid in the back of the eye is removed and the retina is repaired to restore eyesight. It was the first such mission ever attempted in this part of the world. We had a team of four: two of our best operating room nurses, an ultrasound expert, and me.