Posts Tagged ‘ cystic fibrosis ’

11-Year-Old Lung Transplant Patient Returns Home

Friday, August 30th, 2013

Sarah Murnaghan has finally returned home. The 11-year-old, who has cystic fibrosis, underwent a double lung transplant earlier this summer after a federal judge temporarily changed the national policy governing organ transplants, allowing Murnaghan to be placed on adult transplant lists. More from NBC News:

“Sarah’s looking forward to being a regular little kid,” her mother, Janet Murnaghan, said at a news conference Tuesday afternoon. “We’re looking forward to Sarah having a nice long life.”

The child with end-stage cystic fibrosis received the lung transplants in June after a federal judge intervened on her parents’ behalf and allowed her to be considered earlier on the adult lung transplant list for her region. The move sparked a furious national debate about lung transplant allocation and changed the way the Organ Procurement and Transplantation Network considers cases of severely ill children waiting for the transplants.

A first set of lungs failed, and Sarah received a second set three days later.

Sarah has improved enough to be free of oxygen for the first time in 2 1/2 years, though she still needs some help from a machine to breathe, she’s walking short distances on her own and engaging in physical therapy to gain strength, according to her mother, who has posted updates about her daughter to Facebook. Tests of lung tissue showed no sign of rejection, the mother wrote.

Image: Sarah Murnaghan, via NBC News

Add a Comment
Back To Parents News Now

10-Year-Old Lung Transplant Patient Awakens from Coma

Wednesday, June 26th, 2013

Sarah Murnaghan, the 10-year-old girl who was at the center of the debate around whether children should be placed on priority lists for the transplant of adult organs, has awakened from a medically induced coma two weeks after a successful transplant of two lungs.  Murnaghan, who suffers from cystic fibrosis, was the case behind the ruling earlier this month temporarily allowing children under age 12 to receive adult organs.  More from NBC News:

Sarah Murnaghan was able to respond to questions, a family spokesperson told NBC10.com.

She received her new lungs on June 12, after spending three months at Children’s Hospital of Philadelphia with end-stage cystic fibrosis.

Sarah, of Newtown Square, Pennsylvania, became the subject of national media headlines when her parents sued over national transplant rules that place children behind adolescents and adults on the list for adult lungs.

U.S. District Judge Michael Baylson intervened, ordering that Sarah be put on the adult list, where the urgency of her case led to a match days later.

The transplant isn’t a cure for cystic fibrosis, but it can extend her life by years.

Family spokesperson Tracy Simon said Sarah woke from the coma on Friday and was responding to simple questions by nodding to indicate yes or no, The Associated Press reported. Two days earlier, she was moved from a heavy-duty breathing machine to a traditional ventilator.

Add a Comment
Back To Parents News Now

10-Year-Old’s Lung Transplant Complete

Thursday, June 13th, 2013

Sarah Murnaghan, the 10-year-old Pennsylvania cystic fibrosis patient who’s been at the center of the debate over organ transplant policy, underwent a lung transplant yesterday, receiving adult lungs and a positive prognosis from her doctors.  Earlier this week, the national policy governing transplants was given a one-year change, allowing children under age 12 to be placed on priority lists to receive transplants of adult organs.

CNN reports on Murnaghan’s surgery:

Her surgery took about six hours, and there were no complications resizing or transplanting the adult lungs, according to family spokeswoman Tracy Simon.

A statement said the family was elated and that the doctors say Sarah’s prognosis is good.

“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, calling the family of the deceased person who donated the lungs “true heroes.”

Sarah “did extremely well” and was in intensive care after the procedure, Simon said.

The parents’ push for an organ transplant policy change has thrust the issue of who gets donated organs into the national spotlight. Earlier this week, 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. An OPTN news release said Monday that since 2007 only one patient younger than 12 had received adult lungs.

Add a Comment
Back To Parents News Now

Kids’ Organ Transplant Policy Receives One-Year Change

Wednesday, June 12th, 2013

The national policy that governs the way organ donations and transplants work has been given a one-year change to allow children under age 12 to be eligible for priority on adult transplant lists.  The temporary change was prompted by a lawsuit filed by the family of 10-year-old Sarah Murnaghan, who has cystic fibrosis and needs a lung transplant.  More from CNN:

The Organ Procurement and Transplantation Network’s executive committee approved the change in a conference call. It said in a statement that doctors may submit a request to a national review board to have a child who is younger than 12 put on a list for older patients.

The board has seven days to approve the request, taking into account the child’s lung allocation score.

The policy change is valid until July 2014, when it will be re-evaluated.

The temporary exception stems from a case filed by the family of 10-year-old Sarah Murnaghan, who has cystic fibrosis and needs new lungs. A federal junction last week ordered U.S. Health and Human Services Secretary Kathleen Sebelius to tell the OPTN to set aside the rule, but the injunction was good for only 10 days.

“We consider this a tremendous win for Sarah and all kids waiting for lungs,” her mother, Janet, said in a statement on Facebook. “I hope Sarah’s story moves people to become organ donors, because more than any ruling it is the heroes who donate their organs that save lives.”

Add a Comment
Back To Parents News Now

Boy Ordered to Transfer Middle Schools for Having Cystic Fibrosis Gene

Friday, October 19th, 2012

An 11-year-old California boy has been told he needs to transfer to a different public middle school because he carries the gene for–but does not have–the genetic disease cystic fibrosis.  From MSNBC.com:

Colman Chadam, was told last week that he’d have to transfer from Jordan Middle School in Palo Alto, Calif., to a school three miles away because he posed a risk to another student at school who does have the disease, according to TODAY.

“I was sad but at the same time I was mad because I understood that I hadn’t done anything wrong,” Colman told TODAY. He added: “It feels like I’m being bullied in a way that is not right.”

An inherited condition, cystic fibrosis causes the body to create a thick mucus that clogs the lungs and can lead to life-threatening lung infections. About 30,000 American adults and children have the disease and patients have an average life expectancy in the late 30s.

While it is not contagious, doctors say people with cystic fibrosis can pose a danger to each other through bacterial cross-contamination if they are in close contact.

“In general, we would prefer that there not be more than one cystic fibrosis patient in a school,” Dr. Thomas Keens, the head of the cystic fibrosis center at Children’s Hospital Los Angeles, told TODAY.

The district’s assistant superintendent, Charles Young, told NBC News that officials relied on medical authorities who said “a literal physical distance must be maintained” between patients and that the “zero risk option” was to transfer Colman.

Colman’s parents are homeschooling him while they await a decision on the school situation.  They emphasized to the media and to school officials that their son has never had a clinical diagnosis of cystic fibrosis.

Image: School bus, via Shutterstock

 

Add a Comment
Back To Parents News Now