(CNN) -- Sarah Murnaghan, the Philadelphia girl who
underwent a lung transplant last week following a court battle, is out of a
coma and responsive.
The 10-year-old woke up Friday night, said Tracy Simon, a
family spokeswoman.
Although she remains on a ventilator and is unable to talk,
she is nodding and shaking her head in response to questions, Simon said.
Prior to her surgery, Sarah, who suffers from cystic
fibrosis, was put in a medically induced coma to allow her body needed rest
prior to the transplant surgery.
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 a grownup.
"We expect it will be a long road, but we're not going
for easy, we're going for possible. And an organ donor has made this possible
for her," the family said in a statement.
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.
Sarah received lungs donated by an adult, according to
Simon, meaning the lungs needed to be modified.
She 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, Janet Murnaghan, that Sarah had less than five weeks
to live.
With just weeks left, Sarah fights the system for
life-saving pair of lungs
"We knew at some point, she would need new lungs,"
her father, Fran Murnaghan, said in May. "We had hoped it would be much
further down the road, but the disease has progressed."
At that time, Sarah had been on the waiting list for new
lungs for 18 months.
The Murnaghans were under the impression that the transplant
would happen any day, since she was the first candidate on the priority list
for children in her region.
But children's organs rarely become available. In 2012,
there were just 10 transplants in Sarah's age group, according to the United
Network for Organ Sharing. Comparatively, there were more than 1,700 adult
transplants in the same year. Only people 12 years and older qualified for the
adult lungs.
Doctors previously have said they believe modified adult
lungs could save her life.
Her family contacted a lawyer this month, who petitioned
Health and Human Services Secretary Kathleen Sebelius to change the rules that
keep children under 12 from being prioritized for donated lungs.
Sebelius had previously told the family that she didn't have
the authority to intervene in a particular case, but she did also call for a
policy review. Any change in the policy, though, could take up to two years --
time the Murnaghans didn't have.
In a letter before the surgery, the family argued the rule
was making it all but impossible for Sarah to receive a lung; every adult on
the list would have to turn down the lung to let the little girl have it.
"The Under 12 Rule is unfair, arbitrary and capricious,
inconsistent with the statute and regulations, and stands in the way of Sarah
potentially receiving a set of lungs that she needs to live," wrote
Stephen G. Harvey, the family's lawyer.
Dying girl's plight sparks fight over organ transplants
"We have never, ever asked that Sarah get special
attention or be placed in front of anyone more severe than her," her
father said at the time. "So if there ... is another adult who is more
severe, who has a higher lung allocation score, they will still get their lungs
first."
Several factors determine someone's place in line on the
adult list: distance from donor to potential recipient, a lung allocation score
determined by a patient's diagnosis and test results, and a patient's blood type.
Several lawmakers also got involved urging Sebelius to act.
Rep. Patrick Meehan and Sen. Pat Toomey, both from Pennsylvania, co-signed a
letter sent to HHS. It read: "You have the ability and authority to
intervene to allow for Sarah and other children under the age of 12 to become
eligible for adult organs."
On June 5, the Murnaghan family asked a federal judge to
issue a restraining order to block Sebelius from having the agency that
oversees transplants apply the policy. The judge granted the injunction and
ordered Sebelius to direct the Organ Procurement and Transplantation Network to
waive the rule in Sarah's case.
Sebelius sent a letter to the OPTN the following day
directing it to comply with the judge's order.
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