There was a slim chance to save the baby's life. But it required an unflinching act of faith.
The young couple watched anxiously as I examined their three-month-old baby at Yale-New Haven Hospital, where I specialize in pediatric hematology-oncology. It was difficult to answer the question in the eyes of Susan and Barry Krumm, for I knew that statistics said their tiny Katherine was destined to die.
Susan and Barry had already grieved over one lost child who died in infancy. Now their new baby suffered from the same disease, FEL (familial erythrophagocytic lymphohistiocytosis), a genetic form of histiocytosis in which a type of bone marrow cell proliferates abnormally and destroys vital blood elements. Only one of every million babies is born with it.
As a physician I could not give the Krumms high hopes. To save this child, whom I had affectionately nicknamed Krummbunny, I knew we would need a miracle.
It was children like Katherine who led me into pediatrics. I became deeply involved with my patients, even making a lace-trimmed nightgown for one baby whose mother never visited. But time after time I was taught by my young charges. In endeavoring to help one boy facing a rugged test, I suggested he envision Jesus in the room with him. "Think about Jesus," I said. "I want you to imagine that Jesus is hugging you tightly."
He looked up at me as if I were a little odd and said, "But Jesus is already here." He knew the truth better than I. The test went smoothly.
But Katherine was facing something far more perilous than a test. If something wasn't done soon, she would be dead within weeks. There was one chance to save her life but it was slim: finding a donor for a bone marrow transplant.
As a stopgap, we put her on chemotherapy. (Even so, she might live six months, perhaps a year.) Katherine rallied under the treatment, chortling at all of us with her delightful toothless smile. I asked fellow doctors and nurses to write notes in the "Book of Hope" I kept outside her door. As the staff struggled to record positive words, I saw a subtle, even hopeful, progression in their notations on her medical chart. Together we joined in a daring hope that she might survive. She became an outpatient, coming in for three days of chemo every three weeks.
The odds we faced were formidable. First we had to find the right donor. So far the only successful transplants in babies this young were from a brother or sister. But Katherine had no living siblings. Hers would be the first unrelated transplantation in our hospital.
Finding a match in time would be a major miracle. It had to be perfect: Six genetic elements must be exactly the same. No child had yet survived a partial match; even five out of six aren't enough.
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