Miracles We Have Seen

by Harley Rotbart

  Mike went on to college and then to medical school. During his residency training, he helped establish a free clinic in a depressed and underserved neighborhood in Washington, DC. Following his residency, he established an urban clinic in another underserved city, providing free and low-cost care to kids in need. But Mike didn’t stop there. Over the ensuing years, he helped establish a new children’s hospital, including a residency training program, and recruited faculty to teach new doctors the importance of public service in health care. His ongoing work included the development of programs for children with special health-care needs.

  In recognition of his yeoman-like efforts on behalf of the neediest and sickest children, Mike was given a Distinguished Alumni Award from his college, an Alumni Citation Award from his medical school, and a Lifetime Achievement Award from the children’s hospital he helped to establish.

  One courageous patient, saved by one iron lung machine and numerous heroic medical caregivers, led to a legacy of thousands of ongoing miracles. Mike’s life story taught us, and reminds us to teach others, the nearly infinite potential of each life saved.

  Editor’s note: When I (Dr. Rotbart) told Dr. Kappy about this “Miracles” book project, he told me the incred-

  ible story of a young boy surviving GBS thanks to an iron lung machine and many dedicated caregivers. That young boy was Michael Kappy himself, the co-author of this essay, who went on to the distinguished career described herein. Dr. Kappy noted that his story wouldn’t work for the book because the doctors providing care for him as a child were very unlikely to be available to write about it, now sixty years later. I asked Dr. Kappy if he would allow me to help tell his story, and if he would co-author it with me. I hope you’ll agree, this was a story well worth sharing on behalf of Dr. Kappy’s doctors, nurses, and therapists of so many years ago.

  10

  Difficult Decisions

  Patients and their families are often faced with gut-wrenching medical decisions, for which the right choice is far from obvious.

  The first essay in this chapter describes the life-altering decision an extraordinary patient and her family had to make, confronting the very essence of life, death, and the meaning of both.

  The other essays describe decisions where the fate of life or limb hung in the balance, but where seemingly impossible odds left only one reasonable and obvious choice. At times, fate seems to guide us to that obvious decision and it miraculously turns out for the best. But other times, the path not chosen may lead to the most remarkable outcome.

  Date of Event: February 1997

  Choosing to Celebrate

  Lia Gore, MD

  As a first-year fellow training in pediatric oncology (the specialty treating cancer patients), I first met this eleven-year-old girl when I was called to the operating room by the neurosurgeon. He told me he had just removed as much as he could of a large invasive spinal tumor and thought that we would probably want to do bone marrow aspirations while she was under anesthesia to spare her the pain of that additional procedure. The bone marrow is where blood is made and is the frequent site where some cancers spread. As oncologists, we are frequently called upon to do bone marrow aspirations, removing a small amount of marrow through a needle inserted into a large bone, to evaluate the extent of cancer spread. Although this child’s spinal tumor had put significant pressure on her spinal cord, and we were not sure if she would be able to recover the ability to walk, we were nevertheless hopeful that the emergency decompression surgery by the neurosurgeon happened quickly enough before permanent nerve damage had set in.

  We sent the specimens from the tumor to the pathology laboratory, which confirmed our worst fear—she had a highly invasive osteosarcoma of the spine, a very bad type of bone cancer. Once the diagnosis was known, the supervising physician and I sat with the family for quite some time, talking somberly about the dismal prognosis for this disease. Osteosarcoma of the spine is typically not curable unless it can be completely surgically removed, and because of the location of her particular tumor, complete removal was impossible at the time of this surgery. It would have essentially meant removing her spinal column and several ribs through the midsection of her body. The five-year survival rate in this type of situation is less than 10 percent.

  Her family consented to participate in a national research trial for patients with this diagnosis, comparing the standard therapy approach to more aggressive chemotherapy including an experimental new drug. The national center coordinating the research study assigned patients randomly to one of the two treatment groups. We felt somewhat relieved that our patient was assigned to the more aggressive arm of the study, hoping it would give her a better chance, but it was brutal therapy at best. She was in the hospital for the majority of every month, either for chemotherapy or for the complications associated with it. As part of her therapy, she also underwent a very complex surgical procedure attempting to remove all bones with visible tumor. We also elected to include a novel radiation approach during surgery. This complete process required eight physicians representing six disciplines and almost fifteen hours on the operating table with extensive spinal reconstruction (rebuilding the spine and portions of the ribs using synthetic materials to replace bone that had to be removed along with the tumor). We have since teased her that her back resembles the Eiffel Tower, which, in fact, it does.

  Throughout her months-long ordeal, never once did she complain. Never once did she ask, “Why me?” Never once did her family waver in their commitment to making her experience as positive as it could be for anyone around them. This resilient young girl tolerated things better than anyone could have anticipated. Her family showed up in good spirits and decorated her room for every occasion and with every hospital admission. They took it upon themselves to bolster the mood of other families and patients, as well as all of us caring for their daughter.

  About two months after surgery, we were horrified when an MRI test (a type of imaging study that produces pictures of the inside of the body) showed a large mass at the site of her primary tumor that had been previously removed. Again, we had a very long and, this time, even sadder discussion with the family. We were fearful that her tumor had not responded to our best attempts and that this most probably represented progression of her disease despite being on the very aggressive therapy. If that was the case, her prognosis was very poor and her survival likely would be on the order of weeks to a few months. We offered a number of options, and the entire family listened carefully and asked for some time to consider the choices. They went home with the understanding that we would meet with them again after they had had some time to think about all that we had discussed. We then decided together that we would repeat the MRI scan in a few weeks to see how rapidly things were changing, unless she developed new or different symptoms in the interim.

  When they returned to clinic a few weeks later, we were all greeted by a beaming, jubilant young lady who had just turned twelve and looked like she had never felt better. There was no sign of spinal cord nerve damage or difficulty walking. Since we had last seen her, the family had decided to really celebrate her life, helping her experience things she would likely never be able to do in the future. They staged a prom. And a high school graduation. They went to Las Vegas to celebrate her “twenty-first birthday.” They helped her live her life well and beautifully. We were very surprised that the repeat MRI showed that nothing had changed over the past few weeks. The large mass was still there, but had not grown larger. We had been certain that given how quickly the new mass had developed after the extensive surgery, we were going to see widespread continued growth of the tumor. We decided together with the family to biopsy the mass to determine its nature and try to predict how rapidly it might grow.

  One of the surgeons from her first major operation performed the biopsy, and the findings could not have been more stunning to her or to us. The only finding was that our patient had devel
oped benign swelling and inflammation in reaction to one of the synthetic materials that had been used in recon-

  structing her spinal column. There was no evidence of recurrence of her tumor anywhere!

  Our patient completed her chemotherapy uneventfully. She continued to be a shining example of how infectious a great attitude can be. People flocked to see her, to hear what she had to say, laugh at the jokes she told, admire the ever-changing balloons that decorated her room. She joked that being told she was likely going to die got her some great trips for which she sincerely thanked her mom and dad. They all laughed about being able to do it all over again when the real events happened: prom, high school graduation, her twenty-first birthday. Never bitter. Never angry. Simply gracious and grateful.

  To this day, she remains tumor-free. But the miracle of her story is not limited to her cure against all odds. This past fall, she celebrated what she has come to call her “Glad to Be Alive Day”—her sixteenth such celebration. Sixteen years from the day we told her she would likely die, and sixteen years since she chose to celebrate instead of succumb. Her decision to celebrate life came long before we knew she was cured. She was, and still is, at the center of an enormous ring of concentric circles of joy and sunshine that emanate from her wherever she goes. I’ve been blessed to watch her grow up happy and healthy, to see her graduate from high school, and then from college with honors. Every time I am with her, I am acutely aware that we all have choices in how we live our lives. More times than I can count, she chose to persevere where others would have given up. I and countless others have been blessed in so many ways by her presence in our lives.

  I was a young trainee in oncology when I first met her, and she continues to inspire me to help others faced with similar choices of how to live their lives in the face of a dire diagnosis.

  Date of Event: March 2014

  A Source of Light and Love

  Daniel Hyman, MD, MMM

  I met Melody and her family late on a Friday afternoon in March. I had just returned to work a few days earlier after watching my mom die peacefully in her sleep from ovarian cancer. I knew the experience of being with my mother when she died would change me and my perspective on many things, but I could not have anticipated it would happen so soon, or in this particular way.

  Melody was born with Trisomy 18 (T18), a genetic disorder that results in more than half of babies dying at or before birth, and fewer than 10 percent surviving to one year of age. Those dire statistics have understandably led us in the medical community to believe children with T18 will not survive and, therefore, to communicate with families of those children in stereotypical rather than individualized ways. But Melody taught me she was not a statistic.

  When I first met her, Melody was thirteen months old and being admitted to our hospital for severe respiratory distress due to a viral infection. In the emergency department, the physicians and staff had discussed the situation and the likely progression of Melody’s condition with her family. Based on these discussions, the family’s understanding was that Melody was dying, and I was asked, and agreed, to admit her to my inpatient pediatrics service for supportive end-of-life comfort care.

  As I walked into the room to meet her family and obtain a Do Not Attempt Resuscitation (DNR) order, whatever preconceived notions I had about Melody or how her care would proceed proved to be entirely wrong. That afternoon, with her loving siblings and their pastor in the room, Melody’s mom and dad told me about their youngest child. Rather than painting a sad and pessimistic picture, they shared with me how Melody lit up the room when she smiled, how she interacted with those around her, and how her meal time was a special opportunity for her family to show her their love. Since her birth, Melody had become a central source of light and love for all of them, amazing them daily with some new skill or response. Her family considered her birth and her very existence to be a miraculous gift to them all.

  Sitting in the room with them as Melody’s family shared their feelings, I could not help but contrast those moments with ones I had experienced so recently when my mother’s death became inevitable and imminent. My readiness to accept the death of my loved one, as painful as it was for me, was rooted in my knowing there was nothing more that could or should have been done for her. In contrast, if we simply provided end-of-life comfort care to Melody, I worried that this family would always wonder if they had done enough. Would they be able to find the peace of mind I had found?

  I reframed the conversation with Melody’s parents, asking if they were ready to lose her. They acknowledged they were not. They again told me Melody was a happy baby and brought joy to their lives; they truly wanted to be able to take her home again and were absolutely ready and willing to provide her with interventions that might help her to recover. I explained there were a range of treatments that might provide the support Melody needed to fight off her viral infection, yet were much less “heroic” than putting a breathing tube in her windpipe or hooking her up to a breathing machine. Knowing that with additional modest treatments Melody had the chance of surviving this illness and being able to go home again, they agreed to have Melody admitted to the pediatric intensive care unit (PICU) for supplemental breathing support. Admitting a child with T18 to the PICU inevitably raised some eyebrows among my colleagues, but I now felt I knew the family well enough to understand their needs.

  I could not know for certain whether a period of giving oxygen under pressure through a mask, a non-invasive and painless intervention, would help Melody turn the corner, or whether her family would soon need to confront the question of further accelerating her support—perhaps to include

  a breathing tube and breathing machine—which would raise even more difficult issues. Either way, though, I knew that by trying to provide some respiratory and fluid support to Melody, this family would never have to question whether they had done all they could for their child.

  Against all odds, simply receiving oxygen through a mask, Melody did beautifully. She never needed more aggressive care. She improved dramatically in the PICU over several days and then transitioned to home after about a week. I remember crossing paths with Melody’s older sister on the following Sunday morning, just two days after Melody was admitted. The family had just returned from church and I shared my happiness that Melody was doing so well. Her sister said, “Well, there are many people praying for her, praise the Lord.” Indeed.

  Remarkably, Melody is now two-and-a-half years old, one of the rare babies with T18 who has lived beyond a year. And she has done much more than just live. She continues to bring joy to her family and community, a source of light and love. Melody’s family has described to me how she has taught them all the concept of agape love, the highest form of love in which one gives to others with no expectation of return. Yet, without expectations, they have in fact received immeasurable return.

  To her family, Melody has always been a miracle, and she has become one for me as well. I will never forget what she taught me both professionally and personally. Professionally, Melody taught me that in the setting of potential end-of-life decisions, which are never simple, understanding the values and perspectives of patients and their families, and discussing them purposefully, can guide our care. Her family has also helped me recognize that we in the medical profession have many preconceived notions about T18 and condi-

  tions like it, which can mislead us and cause us to communicate insensitively to families and incompletely with colleagues. Stereotypical language such as “incompatible with life” and “terminal genetic disorder” may keep us from considering even modest interventions we would not hesitate to offer to other children. We must always seek to provide patient- and family-centered care, and to do so we must consider every situation in the context of the circumstances and needs of each patient and family, rather than react reflexively based on a diagnostic label.

  On a personal level, Melody and her family reinforced for me
that there are times to intervene and times to let go, and they reassured me that I am still able to see the line between them and help others find that line as well.

  I will always be grateful to this little girl and to this family. My wish for them is that Melody will continue to be their miracle for many years to come.

  Editor’s note: During the final editing and preparation for the publication of this book, I was overjoyed to receive a note from Melody’s family announcing their celebration of her third birthday. In the text accompanying the announcement, Melody’s family wrote this (reprinted here with their permission):

  Everything Melody does is above and beyond what she should be doing. Melody’s physical strength increases weekly, her coordination keeps advancing, her determination is remarkable, and her intellectual capacity is beyond anything we ever would have expected . . . Little Miss Melody, defying all the expectations, is still with us marching strong and blessing just about everyone she meets. She is a treasure, a gift, and a blessing beyond measure. We are so proud of Little Miss Melody!

  The family has developed a website for all those who would like to follow her story:

  www.MelodysStory.com

  For more about Trisomy 18 and the risks of labeling, see:

  http://www.brandonsmt18journey.com/

  http://labeledthemovie.com/?page_id=14

  Date of event: 1995

  An Impossible Pregnancy

  Debra Gussman, MD

  It was a beautiful Friday summer afternoon and I was anxious to finish work and get outside to enjoy the gorgeous weather. But as I got a call from the emergency room (ER), my heart sank. Friday afternoon phone calls from the ER almost always involve something bad for the woman they are calling about—and bad for the gynecologist they are calling. My first thought was, Oh my . . . I hope this isn’t a Friday afternoon ectopic pregnancy. An ectopic pregnancy is a pregnancy that occurs outside of the uterus (womb), usually in one of the fallopian tubes (the tubes connecting the ovaries to the uterus). Ectopic pregnancies are medical emergencies that can threaten the life of the mother if not treated properly. It just seems like those happen more on Fridays.