Transplantation Unplugged: Follow-up on Kidney Transplantation for a Mentally Retarded Child

Remember the story discussed here of the little girl Amelia Rivera who was denied a kidney transplant by University of Pennsylvania's children's hospital (CHOP) because she was mentally retarded. Well, following a media blitz and a 37,000 strong petition through change.org, the hospital is reconsidering it's decision and reports in the media say that it is likely that Amelia will receive a kidney transplant. 

The Children’s Hospital of Philadelphia said in a statement that it “does not disqualify potential transplant candidates on the basis of intellectual disabilities.”

Denying a kidney transplant just based on intellectual ability or because of immigration status reflects an arbitrariness that really should have no place in medical care. Besides, the Rivera's apparent success demonstrates the effectiveness of social media, the main-stream media, and web groups like change.org as catalysts for change. What does the literature reveal about outcomes for renal transplantation in mentally retarded individuals?

Marilee A. Martens and co-workers from Ohio State University in 2006 published a terrific review on organ transplantation and donation and mental retardation in Pediatric Transplantation. It is available open access. They report that outcomes from transplanting mentally retarded patients are good: one-year survival of 100% and three-year survival of 80% although the number of studies is small and the sample size is limited. Nevertheless, the evidence supports transplanting mentally retarded patients.

Source:Martens et al, 2006

In 1995, Bert Kassiske and colleagues on behalf of the the American Society of Transplant Physicians published clinical practice guidelines on renal transplant candidates. These guidelines stated that MR should only be considered a contraindication to transplantation when the cognitive impairment is so severe that it impairs compliance with essential medical regimens. The guidelines also stated that support from family and/or caregivers can compensate for an individual’s inability to comply with medical regimens on his/her own.

Table 1 provides a survey of what transplant centers are doing (at least in 2006) when confronted with a recipient with lower IQ. This data comes from Levenson et al, Psychosomatics 1992 

Source:Martens et al, 2006

Table 2 shows the result of renal transplantation from case reports and information from transplant centers that Martens and co-workers were able to gather. 

The bottom-line is that kidney transplantation in mentally retarded patients needs to be individualized and balanced against outcomes for the patient on dialysis as well as other factors. However, absolutely saying "no" is not supportable. Here, if there was ever a case for making sure an ethics committee is involved before turning down a potential recipient this would be one.