Sarah Murnaghan is 10-years old and she will die if she does not get a lung. That is the sad fact that her parents and loved ones need to face as organ allocation rules may kill their little girl who has been suffering from end-stage cystic fibrosis.
Murnaghan from Newtown Square, Pennsylvania, was diagnosed with the lung disease since she was 18 months. Cystic fibrosis is an illness where the lungs are clogged by mucus. When she was diagnosed, Sarah's lungs were already severely damaged. The drugs that usually help patients with the same problem did not work on her. At the moment, she has been at the Children's Hospital of Philadelphia for three months on a ventilator. Her doctors said she only has a week or two to live.
The young patient cannot get a lung transplant and has been waiting for 18 months. She qualified for the lung transplant program in the Philadelphia region but the big problem is that there are still 105 patients ahead of Murnaghan on the waiting list of patients needing a lung transplant. Most of these patients are somehow healthier than the dying girl. These were detailed on an article on Philly.com.
"The law is, in my view, age discrimination. I don't know if this is too late to make a difference for Sarah. But we'll keep fighting it," Janet Murnaghan, Sarah's mother complained.
The parents of Sarah Murnaghan has launched a last resort campaign through media and other public relation channels in the hopes that they will be heard and that she will be saved.
The complexity of the rules of the Organ Procurement and Transplantation Network is the main culprit why the young patient cannot get what she needs. The donated lungs are allocated according to age groups-under 12, 12 to 17, and 18 and older-depending on the severity of the medical condition. This does not apply to patients below 11 years of age and for older patients.
Since only a few children die due to lung conditions every year, there are just a few lungs allocated to pediatric patients. Only 20 lungs were donated to kids under 1 while the adult patients got 1,500 lungs.
The Murnaghans and their supporters believe that given her severe condition, the young girl with two weeks or less to live should have the priority to receive a donated adult lung.
"It's really sad that this child has waited for 18 months but the issue here is really about how we designed this system to try to make it fair for everyone waiting for lungs. There are ways of working through this that don't involve breaking the rules," explained Stuart Sweet, director of the lung transplant program of St. Louis Children's Hospital.
"She has virtually no competition in her age group and you have to look at fairness from both sides. While children can use adult lungs, adults generally can't use pediatric organs," Sweet added.
The doctors of Murnaghan are also helping and trying to seek the help of the Lung Review Board hoping they will agree to bend the rules so the young girl can get the next adult lungs available. They were declined.
The doctors said that personal appeals can still be made to the adult organ donation centers.
For now, all the Murnaghans can do is appeal and pray while Sarah fights for her life.
While everyone is debating if they will bend the rule, Sarah Murnaghan is not certain if her next breath will be her last.
