A study published in the New England Journal of Medicine (Nov. 22) could potentially rob children with cystic fibrosis of a few quality years of life. The study, "Lung Transplantation and Survival in Children with Cystic Fibrosis," contends that there is little or no survival benefit seen for children with cystic fibrosis who opt for a lung transplant. As the director of the nation's largest pediatric lung transplant program at St. Louis Children's Hospital in Missouri and chairman of the United Network for Organ Sharing pediatric committee, I have to set the record straight.
CF is a devastating genetic disease that affects more than 30,000 Americans. Approximately one in 30 people or more than 10 million Americans carry the defective gene for CF. Sadly, more than half of all CF patients do not live to see their 40th birthday.
As tragic as this disease can be for patients and their families, transplant remains a hope for some if only temporarily. Although the study has significant flaws, one message is valid: Physicians must improve their ability to identify the patients who will benefit most from transplant. Although a transplant is not a permanent solution or cure, in my experience, most patients and their families who have chosen the breath of life that new lungs can provide are thankful for the opportunity.
Decades ago, the public and many in the medical community questioned organ transplantation. Today, transplants involve every major organ, tissue and cells. Medical technology continues to improve, and transplantation has become a lifesaving procedure for many children with congenital or chronic conditions or diseases. Research studies continue to focus on preventing graft rejection and the development of new anti-rejection drugs and therapies that are less toxic and more effective.
With every lung transplant, we not only potentially prolong and improve the quality of life for patients, we learn more about how to better care for these children and how to help prevent rejection and deteriorating conditions that often attack transplanted lungs.Nobody knows more than a parent with a sick child that every single day together is a gift. To have a few more years with a child who can enjoy life more fully thanks to new lungs is an absolute blessing. I'm sure that children I've cared for with CF, whose lives have been improved by lung transplantation, would join with me in telling CF patients and their families: Know the risks that come with transplant, challenge your doctors to help you determine the right time to pursue transplant, but don't underestimate the possibility that a lung transplant could take you from limited options to unlimited potential.
Stuart Sweet, M.D., is director of the Pediatric Lung Transplant Program at St. Louis Children's Hospital.