EDITORIAL

The burden of unsuccessful attempts at miracles

Miracles happen in children's hospitals every day, but some attempts at miracle-making don't succeed. In this hospital, now, there are children for whom even the most advanced treatments haven't been enough:

• A boy's brain tumor was resected but he developed complications that have left him with severe brain damage

• A teenager with congenital HIV infection has lungs that are chronically scarred, reducing his capacity for exercise and growth

• A girl with a metabolic disease has had her life preserved by a special diet but lies immobile and unable to respond, except to smile and to cry

These children, and their families, enter the hospital with an exacerbation of their condition. Much of the time, they are able to be at home, often with considerable help from extended family members, neighbors, and home care nurses. Their lives are filled with 24-hour-a-day medication schedules and medical appointments, and their homes are filled with special equipment—wheelchairs, catheters, monitors. In some cases, preserving life has become the only goal; for many of these children, the possibility of preserving joy, play, or education has been lost. Parents' marriages and careers suffer; siblings participate in providing care.

In most such cases, it's not that appropriate medical care wasn't sought or provided for; it is, simply, that care wasn't enough, or that it failed. At one time, there was hope that the surgery— or the medication or the diet or the transplant—would transform a sick child into someone who would grow up, go to school, play games, and challenge parents. Instead, parents—or grandparents, or a great aunt, or foster parents—now tend to the child's diet and bathing and to exercising limbs unable to move on their own.

Miracles do happen in children's hospitals every day, performed by surgeons and medical specialists and staff who assist them. When the miracle-makers fail, however, the burden of their failure is felt every day by family members. It's their love and dedication that give them the strength to pick up the pieces.

Julia A. McMillan, MD, editor-in-chief of Contemporary Pediatrics, is professor of pediatrics, vice chair for pediatric education, and director of the pediatric residency training program, Johns Hopkins University School of Medicine, Baltimore.

 

Julia McMillan. Editorial: The burden of unsuccessful attempts at miracles. Contemporary Pediatrics August 2004;21:7.