Cystic Fibrosis girl whose parents fought to get her lung transplant against the rules are devastated to learn she is now fighting pneumonia

A 10-year-old Pennsylvania girl who had a pair of adult-lung transplants after her parents sued to change national rules regarding organ donations has now developed pneumonia in her right lung.



On Monday Sarah Murnaghan's mother described the development as 'a large setback' but that after a 'tough' day on Sunday, her daughter's condition had become more stable.

Officials at Children's Hospital of Philadelphia, where Sarah is being treated, have declined to comment on her case.

Tender: Sarah Murnaghan (left) shares a moment with her sister Ella before her lung transplants in June

Brave: Sarah celebrated the 100th day of her stay in Children's Hospital of Philadelphia on May 30 with bubbles. Her mother Janet (right) and father Fran (left) sued to change national rules on lung transplants

Sarah has been hospitalized for months with end-stage cystic fibrosis, a chronic genetic disorder that causes sticky mucus to build up in the lungs, pancreas and other organs.



She received an adult set of lungs on June 12 but they failed within hours. She stayed on a ventilator until a new set became available for a second surgery, which occurred June 15.



Her mother said after Sarah's second lung transplant that those lungs were infected with pneumonia but doctors had removed the infected portion before the transplant.

The girl's condition was also too dire to wait for another set of lungs to become available.



Battler: Sarah has undergone two transplants and is now fighting pneumonia

That transplant did prove more successful, and Sarah was able to take a few breaths on her own after doctors removed her breathing tube.



She had to be put back on the ventilator because of diaphragm paralysis, which her mother described as a common complication that prevents the lungs from fully expanding.



Sarah underwent surgery to repair her diaphragm July 2.

'We have an amazing team of doctors who go above and beyond but also walk this road with us in such a kind and compassionate way,' Murnaghan wrote on her Facebook page on Monday.

The girl from Newtown Square, Pa., a Philadelphia suburb, was a top candidate for organs from a child donor but none were available.



Her parents sued to change a national transplant policy that put her at the bottom of the adult list for patients 12 and older.

A federal judge intervened and the Organ Procurement and Transplantation Network - the private nonprofit group that manages U.S. organ allocation - added Sarah to the adult list.



Family backup: Sarah, Janet and Ella (from left to right). On Monday Janet described Sarah's pneumonia as 'a large setback'

Sarah's situation has sparked a national debate and raised questions among some health experts and medical ethicists about how organ donation rules are developed and under what circumstances they might be disregarded.



The typical life expectancy for cystic fibrosis patients is 37 years and continues to rise as new medical advances are developed.



Lung transplants do not cure the condition but can extend the patient's life.



The Organ Procurement and Transplantation Network assigns transplant candidates a score based on a variety of factors in order to determine which gets paired with a set of donor lungs first.