Issue

The good news: Today, children who undergo a kidney transplant have a 95% chance of surviving five years or more after surgery. That’s thanks in large part to the remarkable improvements made in anti-rejection medications over the last few decades.

The bad news: The average life span of a replacement kidney is only 10-15 years. This leaves many children with certain types of chronic kidney disease essentially “outliving” their replacement kidneys as they grow into adulthood. As a result, a new subset of patients has emerged – those needing repeated kidney transplants throughout a lifetime. Waiting for an organ can be a grueling marathon with some adults waiting years for a kidney. In the U.S., more than 97,000 people are waiting for a kidney. To make matters worse, common myths persist surrounding organ donation preventing many people from becoming registered organ donors.

Why we should be talking about this now

As April marks Organ Donor Awareness month, this provides an opportune time to provide a reminder about the benefits of organ donation, and to encourage people to register as organ donors.

Background

Chronic kidney disease and kidney failure among children was uniformly fatal until the last several decades. Since the first kidney transplant was performed in 1954, dramatic improvements have been steadily made in organ transplantation allowing thousands of children and adults to lead healthier lives.

In fact, specialists at Seattle Children’s Transplant Center have been strong advocates on the issue of access to organs for children. Realizing that there was a significant number of adults receiving transplants of pediatric organs, they worked to change this national policy, so that pediatric organs are now allocated to children before being offered to adults.

Children now go to near the top of the list for kidneys from deceased donors under the age of 35. This important policy change shortens a child’s transplant wait from years to months and decreases growth and developmental delays brought on by dialysis — a lifesaving treatment much better tolerated by adults than children. In addition, they have made significant contributions promoting equitable distribution of pediatric organs based on socioeconomic and geographic variables.

However, in the past two decades, the incidence of chronic kidney disease in children has steadily increased.  And, data from the United States Renal Data System (USRDS) show that incidence of kidney failure is rising among adults and is commonly associated with poor outcomes and high cost.

Statistics

National:

  • According to Donate Life America, more than 100,000 men, women and children currently need life-saving organ transplants.
  • According to the U.S. Dept. of Health and Human Services, there are currently 14,930 candidates waiting for a repeat transplant nationwide.
  • An average of 18 people die each day from the lack of available organs for transplant.
  • 90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.
  • More stats can be found at Donate Life Today.

Washington state:

  • According to the U.S. Dept. of Health and Human Services, there are 1,911 transplant candidates waiting for organs in Washington state. Of those, 266 candidates are waiting for a repeat transplant.

Seattle Children’s Transplantation Center:

  • Seattle Children’s Transplant team has performed approximately 650 organ transplants.
  • The outcomes of our liver, heart and kidney transplant programs are among the best in the nation.

Experts on pediatric organ transplantation available for media interviews

  • Patrick Healey, MD, Division Chief, Transplantation. Dr. Healey has been a member of the United Network for Organ Sharing (UNOS) Organ Availability Committee (2007–2008) and the UNOS Pediatric Committee (2005–2007).
  • Simon Horslen, MB, ChB, Medical Director, Liver and Intestinal Transplantation. Dr. Horslen is past-chairman of the UNOS Pediatric Transplant Committee and a member of the AST Education committee and the Executive Committee of the AST Pediatric Community of Practice.
  • Ruth McDonald, MD, Medical Director, Solid Organ Transplant. Dr. McDonald serves on the UNOS Kidney Committee and is an elected member of the UNOS Board of Directors. Additionally, she serves on the pediatric nephrology sub-board of the American Board of Pediatrics.
  • Jorge Reyes, MD, Director, Transplant Services. Dr. Reyes has held leadership and advocacy positions in the transplantation community and nationally through UNOS and the Advisory Committee on Organ Transplantation (ACOT).

Pediatric transplantation expert quote

“Today young patients with kidney disease face a unique challenge. Unlike some of the other organ transplants that can last the child’s lifetime, kidney transplants typically last only 10-15 years. That’s because the medications used to prevent rejection are toxic to the kidney long term.  Therefore, the patient will need more than one kidney transplant during their life,” said Dr. Ruth McDonald, medical director of solid organ transplantation at Seattle Children’s Hospital.

18-year-old awaiting 2nd kidney transplant available for interviews

Talk with an inspiring 18-year-old patient who doesn’t let the fact that he’s waiting for a new kidney keep him from his favorite hobby, snowboarding. Born with kidney failure, he received his first kidney transplant at age 3; his donor was his mother. Now, with his kidney nearing the end of its life span, he’s faced with dialysis if a donor kidney doesn’t become available. Unless new treatments are developed or current anti-rejection medication protocols are improved, he will need multiple transplants throughout his lifetime.
Additional Resources

If you’d like to arrange an interview with a Seattle Children’s expert or the patient family mentioned above, please contact Children’s PR team at 206-987-4500 or press@seattlechildrens.org.