There are few things in life as tragic as the state of affairs in homes where cystic fibrosis is draining the lives of young children. A few short years ago, children born with this breath-robbing disease were likely to die before the age of five or six; before even having the early-life joy of beginning schooling. Parents were often awake throughout the night, struggling to drain their child’s lungs of choking mucus; mucus that would redevelop as quickly as it could be depleted. The thick, sticky fluid would block the airways, damage the lungs, and bring about early death.
Today, fortunately, some with this suffocating illness can, with constant effort, live to their 20s, 30s, or longer. Today, about 30,000 American children (70,000 world-wide) are fighting back against this killer.
Ten-year-old Sarah Murnaghan of Newtown Square, Pennsylvania is a victim of cystic fibrosis. She is in dire need of a lung transplant; without it, she will die. Sarah is now on a ventilator, confined at the Children’s Hospital of Philadelphia until she dies or receives a life-saving lung-transplant.
Sarah’s hopes of living are small; last year, only 20 lung transplants were completed in children under the age of 11. Sarah’s parents and friends are desperate for a change to the system. As it is today, persons over the age of 12 receive these transplants according to need; those most likely to die soonest receive the first available lungs for implantation. But for those like Sarah, under age 12, the lungs are given accordingly to where they are on a waiting list; need is not an issue, only the time on the list is considered.
Sarah’s mother heads the family movement to change the law, to allow Sarah to live and be happy. Change takes time. All involved agree that it is unfair for any person or group to have a final say in who shall die and who live. Secretary of Health and Human Services Kathleen Sebelius is working on behalf of Sarah to ask the source of organs for transplant, the Organ Procurement and Transplantation Network, to review its policies. That agency is not-for-profit, and under contract with the federal government. Secretary Sebelius seeks a “transparent, deliberative review, as soon as possible” of policies to make more transplants available to children consistent with the goals of fairness and best use of organs. In addition, the Murnaghan family is searching for private donors for last resort surgery.
Fairness is important. We can only hope that the young girl receives lifesaving help in time.