Analyzing Cystic Fibrosis in The Case of Sarah Murnaghan

The journey to survival is often not as rosy as many would like it to be. This was no different for Sarah Murnaghan who had been suffering from cystic fibrosis since birth. Her condition was swiftly deteriorating as both her parents and the doctors never thought she would live past ten years. By this age, Sarah was already experiencing the effects of the end-stages of her medical condition. Sarah’s condition came into the limelight early in June, 2013 when a controversy emerged on the possibility of Sarah getting a lung transplant. The dilemma in Sarah’s case was that she was in dire need of a lung transplant as she was bound to succumb to the diseases yet she was not eligible for adult lungs which were copious owing to her age. Sarah had been on the transplant waiting list for about 18 months as of June, 2013. She had been put first in line to receive a lung transplant from child donors, basically categorized to be below the age of 12 years. This was, however, a rare case as child lung donors were in short supply and her condition could not wait. She was consequently put at the end of the waiting list for adult lungs which would only take effect after every single person aged 12 and above with her corresponding blood type did not want the lungs, including those less sicker than her. Adult lungs were however in abundant supply with a ratio of 1700:10 compared to child lungs (Welch and Carroll, 2013).

The current system demanded that children aged 12 and over be given preference for adult lungs. This tenet took into account the age, the severity of a patient’s state and the probability of survival. However, in essence, dictating who dies and who lives is an impossible decision. This did not sit well with Sarah’s parents and thus they launched a campaign to alter the ‘under 12’ rule which they claimed was age discrimination. They portrayed Sarah’s case as bureaucratic interference and her quandary obtained considerable amounts of media attention.

This publicity campaign bore fruition when a judge ordered the temporary suspension of the ‘under 12’ rule and forced the Organ Procurement and Transplantation Network (OPTN) of the US to add Sarah to the list of adult lung transplants. The OPTN also opted to create a committee to hear similar appeals and decide on whether to make permanent changes to the rule or temporary specific exceptions (Welch and Carroll, 2013). This obviously raised questions among some paediatrics based on medical ethics on how organ donation laws are developed and the circumstances under which they might be disregarded.

The judge had, however, argued that the rule was discriminatory and Sarah had been awarded the chance to get an adult lung transplant based on her dire necessity of the lung transplant and her limited time left to live should she fail to obtain the transplant. On the contrary, the bioethicists argued that the main reason as to why children get low priority for lungs is that adult lungs barely fit forcing one to use only a fraction of one lung. Using only a lobe subsequently impacts negatively on the chances of survival (Welch and Carroll, 2013). Nonetheless, Sarah’s parents opted to cling on the negligible possibility of downsizing an adult lung for a child transplant.

In as much as this ethical decision was regarded as capricious and serving only individual pleas, the only other alternative course of action that would termed ethical was to follow due procedure and wait for the OPTN system to design policies that would integrate cases like that of Sarah. By this time, Sarah would be dead or have to continue waiting on the both the adult and children list till a lung is found, by which time also Sarah would be long dead.

None of the alternative options were favourable and so Sarah was awarded an adult lung transplant based on the earlier ethical decision made which suspended the rules of OPTN. The outcome of the situation was, however, dramatic as the first lung transplant failed within a matter of hours of completion of the operation. This was due to rejection and she was placed on a lung bypass machine for three days, after which a second pair of adult lungs became available. The second pair of lungs was infected by pneumonia but Sarah was out of options and had no time to wait for another pair of lungs to be availed. Her parents, therefore, went for it. The second operation was successful though, Sarah developed pneumonia. She was put under some mechanical systems to help with her diaphragm and given breathing tubes to aid her in breathing (Welch and Carroll, 2013).

Sarah was later discharged and went home where she continues to undergo physical therapy as part of her recovery process. The suspension of the OPTN rule also favoured two more children. Well, I guess it is not that bad to break a few rules to save a life.