PHILADELPHIA (CBS) – The Murnaghan family is speaking out for the first time since 10-year-old Sarah’s surgery.
Sarah Murnaghan, of Newtown Square, Pa., underwent double lung transplant surgery at the Children’s Hospital of Philadelphia on June 12th. (See Related Story)
The Murnaghans have been on an emotional medical roller coaster for two weeks. Janet, Sarah’s mother, says Sarah’s first transplant was a success, but then there was a complication; Primary Graft Failure, which occurs in up to 25 percent of lung transplants. It caused that lung to fail. The failure resulted from the low quality of the lungs. The prognosis was grim and the family had a choice of a risky second transplant or death.
On June 15th Sarah underwent a second transplant. This time the lung was infected with pneumonia, but doctors were able to out the compromised portion. Janet says Sarah was swollen and it was tenuous, but over the past two weeks, progress has been positive. Friday, Sarah wass still on a ventilator, but she’s responsive and is hopeful she’ll be home for her 11th birthday on August 7th.
The following statement was released by Sarah’s parents detailing her journey over the last two weeks:
Janet and Fran Murnaghan Provide Important New Information on their Daughter Sarah’s Treatment and Condition
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.
Her doctors continue to wean her from her ventilator, her last two chest tubes were removed today we are taking steps to prepare her for extubation again.
We’re not out of the woods, but Sarah’s 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 Sarah’s lung transplant was a success, things quickly spiraled out of control. Though we had made Sarah’s 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. Sarah’s vital signs had begun descending rapidly as her new lungs started to fail. We were devastated and could only pray as CHOP’s 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 Sarah’s 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 Sarah’s 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 Sarah’s 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 Sarah’s 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 Sarah’s attempted extubation was unsuccessful this week. On Monday, Sarah’s 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 Sarah’s 11th birthday at home on August 7!
We will continue to focus our attention Sarah and her recuperation. To Sarah’s new friends from around the world, we can’t thank you enough for continuing to root for our little fighter. And we can’t thank enough the two heroes in Sarah’s story who gave her the opportunity to live. We can never fully put into words the gratitude we feel towards both donor families, as well as the doctors and nursing staff at CHOP.