Friends of Sarah Murnaghan
Thank you everyone who has been so incredibly kind and supportive during what clearly has been the most stressful time in our life. We are not completely out of the woods yet and expect a long recovery, but Sarah has outpaced the doctors' expectations at every step. We expect to wake her fully from sedation in the coming week and will be sure to post a video of her awake and fully experiencing her new lungs.
We have been steadily receiving notes of encouragement for Sarah and many asking to fundraise for Sarah. Therefore we have set up this fund that will be used to cover medical costs, rehabilitation over the remainder of the year and Sarah's future.
In addition, below is the note that we wrote to close out the Change.org campaign that everyone contributed to. With over 373,000 supporters we all made a positive change for all children who may find them in our situation. Since the policy change took effect by OPTN, transplant centers across the country have followed the process that Sarah has benefited from and have been able to list their pediatric patients on the adolescent/adult transplant list based on their Lung Allocation Score. Your efforts are saving lives.
God bless you all for standing by Sarah and the other children who now will have the opportunity to live to their lives to the fullest.
Janet, Fran, Sarah, Ella, Sean and Finn Murnaghan
with 373,276 supporters
To all of you who have taken up Sarah's cause and signed this petition to change the Under 12 Rule "“ thank you! Your incredible efforts have helped change policy and save lives.
On June 10, the Organ Procurement and Transplantation Network (OPTN) board unanimously passed a resolution to allow children under 12 to be considered for the adult lung transplant list on a case-by-case basis by OPTN's Lung Review Board.
Three days before, a federal judge had granted Sarah and another boy - Javier Acosta, who is also in Children's Hospital of Philadelphia with end-stage cystic fibrosis - a temporary restraining order that allowed them to be considered for an adult lung transplant based on their Lung Allocation Scores (LAS).
On June 13, we received news that adult donor lungs became available and Sarah received a lung transplant.
Sarah got lungs quickly after going to the adult list because her LAS finally mattered and she was the sickest one on the list. She had an LAS of 91 out of 100 when transplanted.
We are in the early stages of recovery and Sarah's battle has been rough, but we're continuing to fight.
As difficult as this process has been post-surgery, we appreciate that OPTN has now opened the door for other children in Sarah's unique position to become eligible for adult lung transplant.
The OPTN's decision does not mean that children under 12 will automatically go to the front of the transplant line. They will not receive special treatment, but they will now be placed on the waiting list based on the severity of their illness the same way people 12 and over are listed.
We 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.
God bless you all for standing by Sarah. Thank you to Congressman Pat Meehan, Senator Pat Toomey, Senator Bob Casey, Congressman Lou Barletta, Governor Tom Corbett and all of the other elected officials who fought to change the Under 12 Rule. To all of Sarah's supporters who signed this Change.org petition, we thank you and ask for your continued prayers in support of Sarah and all people waiting for organ transplants.
Janet, Fran, Sarah, Ella, Sean and Finn Murnaghan
Posted by Janet Murnaghan
The big part of rehabilitation now is building back the muscles, which takes time. She does physical therapy every day and is now walking with a walker to support as needed. She loves to take walks in the neighborhood after dinner with the family and is so proud of her progress.
She is also back in school at home, with teachers coming in house four days a week. Her classmates and friends have been visiting and she is excited to going back to school, which will be next year.
Thank you again for the support as Sarah would not be with us today without what everyone did with us to make a change.
A must read from The New England Journal of Medicine about Sarah and the issues that we fought for. http://www.nejm.org/doi/full/10.1056/NEJMp1307792?query=featured_home#t=article
This week our family fully expected to celebrate the event weve been waiting 19 months for - our daughter Sarahs first independent breaths with her new donor lungs. Her doctors continue to wean her from her ventilator, her last two chest tubes were removed today we are taking steps to pr...epare her for extubation again. Were not out of the woods, but Sarahs health is trending in the right direction and we wanted to provide more detailed information as to what she has been going through. After we announced the overwhelmingly joyful news on June 12 that Sarahs lung transplant was a success, things quickly spiraled out of control. Though we had made Sarahs battle very public, we were completely emotionally unprepared for what was to come. That evening, as we waited for Sarah to be transitioned back to her room, an emergency code blue was announced. Sarahs vital signs had begun descending rapidly as her new lungs started to fail. We were devastated and could only pray as CHOPs surgeons performed immediate emergency surgery to transition Sarah to VA ECMO, a bypass machine that took over the function of her heart and lungs. Thankfully, Sarah survived the transition to VA ECMO. The news was grim Sarah had a complication called Primary Graft Failure (PGF), which occurs in 10 percent to 25 percent of lung transplants, resulting in the death of half of all patients affected by it. Further analysis of the first set of donated lungs revealed that the cause of the PGF was due to the quality of the donated lungs. Only 80% of donated lungs are transplanted, as lungs are often in poor condition after the donor's death. In Sarah's case, the donated lungs were known to be in less than optimal condition, but Sarah was out of time to wait. Doctors told us Sarah was unlikely to survive more than a week on VA ECMO given her condition and that her only hope for survival was a second lung transplant. With an LAS score of 87, her surgeons listed Sarah for transplant again that very night, and the next day OPTN approved Sarah to be listed for adult lungs based on their new case-by-case review procedure. It was agonizing watching Sarah kept alive on VA ECMO, and her doctors prepared us for the probability that Sarah would die, either before a second surgery could take place or on the operating table. Three days later, on June 15, we learned that new lungs were available for Sarah. We were warned, though, that the lungs were high-risk because they were infected with pneumonia. They were Sarahs best and only hope. By 1 pm that same day, Sarah was wheeled in for her second transplant, performed by the same surgeon who did her first transplant, Dr. Thomas Spray. The second transplant operation was truly a success she made it through the surgery and no longer needed to be on VA ECMO, but her little body was very traumatized by all she had been through. Each day since then, her lungs have improved on x-ray and have continued to work better and better. As the days have gone by, she has needed less and less support from the ventilator. On June 21, seven days after the second transplant, Sarah underwent yet another surgery to close up her chest which her doctors had allowed to remain open so she could heal. Sarah was slowly brought out of her induced coma and began opening her eyes and communicating by nodding her head. It was only then that we could allow ourselves to feel real hope and begin posting some information on Facebook about Sarahs progress. Her health was so precarious and we were so physically, mentally, and emotionally drained that we kept some of what was going on at the hospital private. Her care and being by her side has been our focus. Thanks to all who supported us through Sarahs ordeal and your understanding of our capacity to share what we could. It was your prayers, hope, encouragement, and love that have carried Sarah to this point and gave us strength. The road to recovery is long and Sarahs fight is not over. Sarah has a partially paralyzed diaphragm, which can happen during a complex surgery like a lung transplant, and it is the reason why Sarahs attempted extubation was unsuccessful this week. On Monday, Sarahs doctors will perform a procedure called a diaphragm plication to flatten the dome of the diaphragm, to provide the lung with greater volume for expansion and hopefully ease extubation. This is a minor set back in the grand scheme of things. The important thing to us is that sweet little girl is back with us and is very much alive. She is communicating, she has sat on the side of her bed and started exercising her arms and her legs. And she is determined than ever to walk out of the hospital and go home to her brothers and sister. In fact, we have a goal of celebrating Sarahs 11th birthday at home on August 7! We will continue to focus our attention Sarah and her recuperation. To Sarahs new friends from around the world, we cant thank you enough for continuing to root for our little fighter.
Wishing you strength, healing, and peace in your recovery process. You are a fighter, and fighters never, ever give up. You were meant to do great things Sweet Sarah Murnaghan, God has seen fit to lift you up and over that mountain. Love, hugs, kisses and prayers...always!!!