Victory for girl told she was too young to have a lung transplant

Cystic fibrosis sufferer wins legal battle over rules which discriminate against under-12s

New York

A 10-year-old suffering from cystic fibrosis whose family went to the courts to fight a rule preventing her from accessing a list of adult lung donors, triggering a national debate about the regime governing transplants for children, was recovering at a Philadelphia hospital after receiving a set of adult organs.

Doctors operated on Sarah Murnaghan for six hours, transplanting adult lungs on Wednesday, after a court ruling gave her access to a broader pool of donors. Under the rules governing transplant cases involving children under 12, Sarah would have been made to wait for paediatric lungs. Adult lungs would only have been offered to her after being declined by patients older than 12. Lungs from adults either have to be trimmed to fit the smaller frame of a child, or else just the a smaller part of the organ, the lobe, is transplanted.

Her aunt, Sharon Ruddock, credited the US District Judge Michael Baylson’s ruling on 5 June with clearing the hurdles for the surgery. “It was a direct result of the ruling that allowed her to be put on the adult list,” she told the Associated Press. “It was not paediatric lungs. She would never have got these lungs otherwise.”

The transplant rules were also challenged by lawyers for another young cystic fibrosis patient, 11-year-old Javier Acosta, who was also given access to the adult list following a favourable court ruling.

The challenges to the transplant rules have drawn national attention, triggering a debate on both the regime, and on the question of whether or not judges should intervene in medical policy, particularly in procedures as tricky as transplants.

Earlier this week, the Organ Procurement and Transplantation Network (OPTN), the body responsible for managing transplant lists in the US, created a new mechanism that would assign certain cases involving children under 12 “additional priority”, thus allowing transplant teams to consider them for organs belonging to older donors.

The underlying rules, however, remain unchanged, and the new policy, which was approved by the body’s executive committee, will expire next year, pending a review by the OPTN board. It will also be subject to additional studies and recommendations.

Sarah’s health was deteriorating when her family secured the court order allowing her to access the expanded donor list, and she had slipped into a coma. Now, her family are looking forward to her recovery. “Her doctors are very pleased with both her progress during the procedure and her prognosis for recovery,” her mother, Janet, said in a Facebook post following the surgery.

She added: “The surgeons had no challenges resizing and transplanting the donor lungs – the surgery went smoothly and Sarah did extremely well.”

In young Javier’s case, his lawyer cited his brother, who died two years ago. “Javier needs a lung transplant to survive,” said the complaint filed with the court, according to ABC News.

“Without one, he will most likely die before his 12th birthday in August... What makes Javier’s situation even more heartbreaking is that Javier’s brother... died two years ago at the age of 11 while waiting for a lung transplant that could have saved his life.”

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