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Family of girl desperate for lung transplant

lung transplant girl

The parents of a 10-year-old Pennsylvania girl who’s been waiting more than a year for a lung transplant says the girl has essentially been “left to die.”

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A Philadelphia girl’s fight for a lung donation blazed a trail for other children who need organ transplants. On Monday a donor board voted to give child patients more access to organ donations that could save their lives.

Sarah Murnaghan’s family battled the Department of Health and Human Services so that the 10-year-old could be considered for an adult lung donation in June 2013.

Her case is permanently changing the way kids qualify for transplants. The board voted to make the “Under 12″ donor lung allocation policy permanent.

Sarah had been fighting for her life last spring as she struggled with cystic fibrosis. She had to undergo two double lung transplants.

A federal judge granted a temporary order that allowed her to join the adult list, instead of just the children’s. She was able to get adult lungs and is now breathing completely on her own.

“I’m not surprised,” says her father, Fran Murnaghan. “I mean often, in order to initiate change either through government or whatever may be. I mean you really have to push and standup, and just make people aware. That was the biggest thing, we wanted to make people aware of the issue. And from that point, it just really became a steam roll and we were able to make change.

(FOXNEWS) Sarah Murnaghan, the young Pennsylvania girl who received new lungs after a long court battle with the Department of Health and Human Services (HHS), is now breathing completely on her own.

Janet Murnaghan, Sarah’s mother, took to Facebook on Sunday to share the medical milestone with her followers.  She said that Sarah was admitted to the Children’s Hospital of Philadelphia (CHOP) on Friday, where doctors began the process of removing her breathing tube and closing up the tracheostomy – a surgically created opening through the neck into the trachea for the tube.

With the post, Janet Murnaghan included a picture of Sarah without her breathing tube.

“Everything has gone beautifully! We are still at CHOP, planning to go home tomorrow,” Murnaghan wrote on Facebook. “This is the best one year anniversary picture I could ever imagine sending to you all.”

Read More: FOXNEWS

 

 

Local News
07/08/13

Lung transplant girl has pneumonia

By Lauren Russell, (CNN) — Less than a month after two lung transplant surgeries to save Sarah Murnaghan’s life, the 10-year-old has developed pneumonia in her second set of replacement lungs, her mother posted on Monday.

Sarah has developed pneumonia in her right lung, her mother, Janet Murnaghan posted on her Facebook page. Physicians believe it was caused by aspirations from her belly, she wrote, meaning contents from her stomach went through the wrong pipes and into her lungs.

“Yesterday was tough,” Murnaghan wrote. “Today she is more stable, but this is definitely a large set back.”

The lungs were infected with pneumonia before they were implanted, but this is a new infection.

Pneumonia is not uncommon after any type of lung surgery, CNN’s Sanjay Gupta said.

“Sarah had an even higher increased risk because she’s taking immune-suppressing drugs and because of her cystic fibrosis,” Gupta said. “But even with a setback like this infection, nearly 80% of people survive at least one year after lung transplant.”

Sarah was born with cystic fibrosis.

Her family pushed for a change national transplant policy as they fought for her to be eligible for adult lung donations. Her family had been told she had five weeks to live in May, and she had been on a transplant list for children’s lungs for 18 months

After the Murnaghans petitioned, the Organ Procurement and Transplant Network’s executive committee approved a one-year change that makes children younger than 12 eligible to be on adult lung transplant priority lists.

Sarah received her first transplant lungs June 12, one week after she became eligible for adult lungs. The donated lungs were poor quality, but the family proceeded with the surgery because “Sarah was out of time to wait.”

The lungs failed shortly afterward, and Sarah underwent emergency surgery to put her on a bypass machine to keep oxygen pumping through her body.

She received a new set of lungs three days later.

Family members knew the lungs were infected with pneumonia before the surgery, but they went ahead with the transplant because “they were Sarah’s best and only hope.”

Despite the infection, her family had reported steady improvement up until Monday.

In the same post, Janet Murnaghan thanks everyone for their thoughts and prayers.

“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,” she wrote. “Thankful to God for this day!”

(CNN) — Sarah Murnaghan, the 10-year-old Pennsylvania girl whose struggle for a life-saving lung transplant became a national issue, actually had to undergo two transplants days apart, her family revealed Friday.

In some of their first comments since the girl went into an operating room on June 12, the family released a statement detailing the necessity of the second transplant — and explaining that the second set of lungs “were high-risk bcause they were infected with pneumonia.

“They were Sarah’s best and only hope,” the statement added, as the girl remained on a ventilator Friday and unable to breathe independently yet.

The original transplant on June 12 at Chilldren’s Hospital of Philadelphia reportedly went smoothly but that evening “… an emergency code blue was announced. Sarah’s vital signs had begun descending rapidly as her new lungs started to fail,” the family’s statement said.

The girl underwent surgery immediately and was transitioned to a bypass machine that took over the function of her heart and lungs, the statement continued.

She remained on the bypass machine — “… her doctors prepared us for the probability that Sarah would die, either before a second surgery could take place or on the operating table,” the family said Friday — until June 15, when new lungs became available and a second transplant took place.

Although the donated lungs were infected with pneumonia, “Each day since (the second transplant), her lungs have improved on x-ray and have continued to work better and better,” the statement continued.

Her family expressed cautious optimism as they wait for the new lungs to work independently.

“This week our family fully expected to celebrate the event we’ve been waiting 19 months for — our daughter Sarah’s first independent breaths with her new donor lungs,” the family said.

Her last two chest tubes were removed Friday as doctors prepare to remove her intubation tube.

“We’re not out of the woods, but Sarah’s health is trending in the right direction,” her family said.

“The important thing to us is that sweet little girl is back with us and is very much alive.”

Murnaghan, 10, suffers from cystic fibrosis and has been in and out of hospitals her entire life.

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 her first new lungs after a six-hour surgery that included resizing lungs from an adult.

From Jason Carroll and Chris Welch, (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.

“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.

“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.

A ten-year- old Pennsylvania girl’s fight against Cystic Fibrosis escalated into a national battle against a federal policy on  age requirements for organ donations. We learned earlier today that Sarah Murnaghan  received a lung transplant at the Children`s Hospital of Philadelphia. Her Mom Janet says she is out of surgery tonight and doing well.

Her family saying they realize that at the same time they’re experiencing such joy and relief  another family is grieving.     Her mother saying on Facebook,

“We are elated this day has come, but we also know our good news is another family`s tragedy. That family made the decision to give Sarah the gift of life -and they are the true heroes today. “

They cautiously waited until minutes before the surgery. Three times before, the transplant had been canceled.

“It’s been crazy and we’ve been sort of sitting there all night, you know, hoping and praying this one would work.  So it was really thrilling. You find out that you have the final go and then literally 15 minutes later they take her out in the hall and wheel her down,” says Murnaghan

Murnaghan suffers from from Cystic Fibrosis and her fight for new lungs included a legal battle to waive a federal rule requiring recipients of adult lungs to be 12 years old or older. Last week a judge granted a 10 day restraining order on the policy.

U.S. health official asks transplant network to review lungs for children

Governor Tom Corbett today commended the Murnaghan family of Newtown Square, Delaware County, for their efforts to change national policy around organ donation.

The family announced today that 10-year old Sarah Murnaghan will receive a new lung as a result of a multi-week campaign to change current policies.

“I am humbled by the efforts of Sarah and her family to advocate for children in need of organ donations all over the United States,” Corbett said.

“Her story is an example of the strength and will of the human spirit, and a reminder to never give up and always give back to those who most need our help,” Corbett said. “I wish her well.’’

A federal court ruled last week to allow a 10-day extension on an exception to current age restrictive organ donation policies that would preclude children under 12 from receiving adult organs. Sarah Murnaghan had been awaiting a lung transplant and was told she had approximately 5 weeks left to live.

Corbett, as well as several other federal and state officials, sent letters to U.S. Department of Health and Human Services Secretary Kathleen Sebelius asking her to consider changing the restrictive policy.

The governor also expressed his gratitude to the family of the organ donor in Sarah’s case.

“It only takes 30 seconds to become an organ or tissue donor, but those 30 seconds can mean a lifetime to a child or adult in need of a transplant,’’ Corbett said.

Pennsylvanians can become donors when registering on their driver’s license, learner’s permit or for a state identification card. More than 4.4 million Pennsylvanians have already registered as organ and tissue donors, but there is a need for more.

For more information about organ donation, visit DonateLifePA.org

Local News
06/12/13

Toomey grateful for Sarah’s new chance

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U.S. Senator Pat Toomey (R-Pa.) released the following statement after being informed by the family that a donor lung has been found for 10-year-old Sarah Murnaghan.

“I am deeply grateful to the organ donor and his or her family for the potentially life-saving gift to Sarah.”

“Now that a suitable donor has been found, a prayer would help, too – a prayer Sarah’s body accepts the new organ the way doctors believe it can.”

“The judge gave Sarah a chance to receive a new lung.  Now the surgical team at CHOP is giving her a chance at life.”

Local News
06/12/13

Sarah Murnaghan gets long-awaited lung transplant

(CNN) — Sarah Murnaghan, a 10-year-old Pennsylvania girl with cystic fibrosis whose family fought to have her prioritized for adult organs, is getting a new set of lungs, her family told CNN Wednesday. Murnaghan was in surgery in the morning.

“God is great! He moved the mountain! Sarah got THE CALL,” a statement on her Facebook page said. “Please pray for Sarah’s donor, her HERO, who has given her the gift of life.”

The parents’ push for an organ transplant policy change has thrust the issue of who gets donated organs into the national spotlight.

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