In this May 30, 2013 file photo provided by the Murnaghan family, Sarah Murnaghan, left, lies in her hospital bed next to adopted sister Ella on the 100th day of her stay in Children’s Hospital of Philadelphia. (AP Photo/Murnaghan Family, File)
by Michael Martinez
(CNN) — Sarah Murnaghan, the Philadelphia girl who underwent a lung transplant this month after a court battle, struggled after a breathing tube was removed Wednesday, so doctors “sedated and re-intubated” the girl, her mother said through a family representative.
“It’s been an excruciating day. We extubated Sarah and her body could not handle the reduced support,” Janet Ruddock Murnaghan said in a statement issued by a representative. “It was impossibly painful watching her struggle to breath and panic.
“I have cried quite a bit, I just wish everything wasn’t so ridiculously hard for her,” the mother said.
Doctors have assured the family “that this does not change her long-term outcome but just means she needs more time to regain her strength,” the mother said. “One day Sarah will take that first glorious breath and we will celebrate!”
The 10-year-old girl remains on a ventilator and has been unable to talk, but she can nod and shake her head in response to questions, said Tracy Simon, a family spokeswoman, this week.
Before her transplant surgery, Sarah, who suffers from cystic fibrosis, was put in a medically induced coma to allow her body to rest.
Her family fought to allow children to compete with adults waiting for lungs based on sickness in a case that has sparked a public debate. She received new lungs on June 12 after a six-hour surgery that included resizing lungs from an adult.
The parents’ push for an organ transplant policy change has thrust the issue of who gets donated organs into the national spotlight. This month, the Organ Procurement and Transplant Network’s executive committee approved a one-year change that makes children younger than 12 eligible for priority on adult lung transplant lists.
The girl has been in and out of hospitals her entire life, but her condition worsened this year. Her lungs had been deteriorating rapidly over the past few months — much faster than anyone in her family expected. In May, doctors told her mother that Sarah had less than five weeks to live.