by Kimberly Allen, RN
I first heard about the plight of 10 year old Sara Murnaghan around the 25th of May. Sara is suffering from end stage cystic fibrosis and is in desperate need of a lung transplant. Having been a family member of a loved one needing a lung transplant I can understand the anxiety and fear of Sara’s parents and family. However, I also know these situations can be a lot more complicated than the way they are reported in the media. Sara’s mother has petitioned Health and Human Services Secretary Kathleen Sebelius to suspend the rules regarding the procurement and distribution of organ donations is governed by the Organ Procurement and Transplantation Network (OPTN) and is enforced by the United Network for Organ Sharing (UNOS). This means it is not clear whether or not Sebelius has the authority to wave or suspend the current rules. However, Sebelius has requested a review of the current regulations and guidelines. Unfortunately that takes time. Time that Sara doesn’t have.
Since I first heard about this situation it has really taken on life in the media and on social network sites. It has aroused a lot of anger among the public as well as Congress. However, does one person really have the right to “pick and choose transplant recipients”? According to Dr, Art Caplan a bioethisist and director of the NYU Langone Medical Center Division of Medical Ethics states that Sebelius mad the right decision. He went on to say that “what the parents want to do for their child isn’t necessarily the best use of the scarce supply of organs”. In this type of situation someone is always going to lose. If the rules are waved to give Sara the lung then someone else that has been waiting and is also in desperate need of a lung transplant will not receive it and most likely die waiting. There are currently 3 other children under 12 years of age in the same area as Sara waiting for lung transplants as well as 40 people in the 12 years of age and older category waiting for lungs just in Pennsylvania. To date this year there have been 1,133 adult lung donors from deceased adults with only 70 from donors under 12 years of age. This has lead to 291 lung transplants in people over 12 years and only 4 in children under 12 years of age.
Part of the problem is that lung transplants in children have very different challenges than those typically encountered in adults. Medically speaking lung transplants for patients with end stage cystic fibrosis continues to be controversial. Though cystic fibrosis affects the lungs it also affects other organs including the gastrointestinal system, pancreas, and reproductive system. Which means that receiving a lung transplant won’t cure cystic fibrosis that is affecting other organs in the body. According to the US Cystic Fibrosis Patient Registry and the OPTN in 2007 a review of data determined that “the benefit of lung transplants to children with cystic fibrosis between 1992 – 2002 only 5 were found to have significant benefit.” Even today with the advances in medicine lung transplants are risky procedures with only half of those receiving a lung transplant surviving at least 5 years.
In 2005 the OPTN initiated a new allocation system. The new system is based on the severity of a person’s illness and not the amount of time a person has been on the list. This change not only reduced the number of deaths among those waiting for lung transplants but also ensured that lungs were given to those most in need medically as well as decreasing the waiting time, which was over 2 years and cut the waiting list by half. however, this change only applies to patients 12 years and older. Pretty much everyone , experts and non-experts alike, agree that the rules governing pediatric lung transplants needs to be reviewed, but that takes research and evaluation which takes time. Making quick, impulsive decisions because of media pressure is not only not wise but may not benefit the majority of children waiting. So for now those people that want to help the best thing you can do is sign up to be an organ donor. Also, though it is very difficult to lose a child for any reason I have seen and talked to parents that have lost a child, including the parents of one of my son’s classmates, and they have said that it gives them some sense of peace to know that their child’s death, though devastating, provided life for others. The parents of my son’s classmate donated his organs saving 5 children.
Kimberly Allen is a registered nurse with an AND in nursing. She has worked in ACF, LCF and psychiatric facilities, although she spent most of her career as a home health expert. She is now a regular contributor to HealthAndFitnessTalk.com, dispensing advice and knowledge about medical issues and questions. You can reach her with any comments or questions at firstname.lastname@example.org.