United States: Organ Transplantation In Children: What Is Ethical?

Last Updated: June 21 2013
Article by Michael Shapiro-Barr

New ethical questions have been spurred by the recent lung transplantation case involving a 10-year old girl from Pennsylvania.  Sarah Murnaghan, who was diagnosed with cystic fibrosis, had been fighting for her life, ever since her grim prognosis.  While she was able to work her way up to the top of the donor list for children, 18 months later, the lungs she needed were still nowhere to be found.  With her condition worsening over the beginning of this year, she was in desperate need of a transplant, and her parents were running out of options to find a solution.

That is when Sarah's parents began to question the Organ Procurement and Transplant Network's Policy 3.7.6, indicating that any child under the age of 12 cannot receive priority for deceased adult donor lungs.  Backing up a step, to take a look at the overall organ donation process for children, the OPTN handles prioritization among children in need of organs by assigning a priority code of 1 or 2, depending on the child's age and severity of illness.  Children under the age of 12 are given priority of pediatric lungs, based on priority code, but are generally not eligible for adult lungs.  At best, children under the age of 12 can be placed at the bottom of the adult donation list, often times behind those who aren't as critically ill.

With time running out for their little girl, and no sign of a child donor in sight, the Murnaghans took to the courts by filing a lawsuit, challenging the under age 12 policy.  In an emergency hearing on June 6th, the U.S. District Court judge ruled in favor of the Murnaghans, temporarily suspending the age factor in transplant rules for 10 days, due to the severity of Sarah's condition.  As a part of the ruling, the judge ordered U.S. Health Secretary Kathleen Sebelius to request a review of how organs are allocated.  This led to an emergency session of the OPTN on Monday, resulting in the adoption of a new temporary policy allowing children under 12 to be classified as "adolescents," placing them on the adult organ donor list.  The new classification is set to be in place until July 1, 2014, to allow time for review of transplantation policies.  The OPTN created a second candidate record for Sarah, changing her date of birth so the system would treat her as a 12-year old.  This put Sarah on the adult transplant list, while still keeping her original record intact, allowing her to remain first in line on the pediatric transplant list.  As a result of being placed on the adult transplant list, Sarah received a resized adult set of lungs on Wednesday.

An important detail in this case is that adult lungs will not continue growth, while pediatric lungs will—which complicates the process of transplanting an adult-sized lung into a 10-year old child.  In order to do so, surgeons had to resize the adult lungs, removing part of the organ, to successfully fit them into Sarah's chest.  Since the donor was an adult, the now child-sized lungs will not continue to grow as Sarah continues to grow.  This could mean that she will need another transplant, once she has outgrown the resized set of donor lungs.  In a pediatric lung transplant, the donor lungs continue to grow, once transplanted, as the receiving child continues to grow.

While many have felt that transplantation rules were in need of fixing, others are questioning the ethics of the decision to temporarily bend the rules.  Some take issue with the process, and feel that it is not the court's place to step in and exercise authority to bend these rules.  Others take issue with the substantive rule change.  Should children under the age of 12, who are in critical need of an organ, be given priority over those who have worked their way up the adult donor list?  Is it fair for recipients in situations similar to Sarah's, where there will likely be a need for another transplant once they've outgrown the resized donated organ, to be recipients twice?  Was it ethical for the OPTN to falsify Sarah's date of birth on the secondary record, in order to "trick" the system into treating her as a 12-year old?  These questions and many other tough questions will continue to challenge us in the often controversial area of organ transplantation.

The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.

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