Two Liver Transplants Save 2-Year-Old Girl
Like any 2-year-old, Serenity Calerway is happy and chubby, trying to figure out how to stand on her own two feet without help.
But unlike most toddlers, Serenity has had not just one liver transplant, but two.
It was her parent’s rare journey to find their child a liver twice that provides a window into the emotional rollercoaster of organ transplants -- one that is most successful when there is a support system in place.
Serenity’s liver didn't work when she was born. Toxins had filled her body, and she couldn’t get the proteins she needed to develop and grow.
Her condition left her doctors in the dark.
“We tried to diagnose her with a disease, but everything came up negative,” said Ruba Azzam,MD, medical director of the University of Chicago's pediatric liver transplant program.
Eventually, Azzam diagnosed Serenity with idiopathic neonatal liver failure -- liver failure without a reason. Still a newborn, Serenity went on the waiting list for a liver transplant.
Serenity grew sicker each day that she waited for a liver. “She had several infections,” Azzam said, “along with worsening respiratory problems.”
Then a parent’s worst nightmare happened: Serenity couldn’t breathe.
Serenity was quickly rolled into an operating room--not for a lifesaving liver transplant, but to have a tracheotomy cut into her neck.
Serenity was taken off the transplant list, too sick for a transplant surgery.
After her little body recovered from the tracheotomy, Serenity was relisted for transplant. The hospital got word that a family was willing to donate the organs of an infant who had died. It was Serenity's best chance. But in her pre-surgery evaluation, she was running a fever. The liver would go to another child, and Serenity was taken off the list again.
"It was on, off, on off," said Serenity's father, Ricky Calerway. "At times it got rough and it was difficult to keep the faith."
The Calerways leaned heavily on their family, on their church, and on the faint hope that Serenity would improve enough to survive the trauma of transplant surgery.
Michael Millis, MD, director of transplantation at the University of Chicago, was dedicated to doing the right thing for Serenity, but didn't want to put a liver into a patient who was likely to die.
"We cannot take a donated organ and put it in a scenario in which we already know that it's not going to last," he said.
The government arranges organ allocation with the input of physicians, and Millis considers this a stewardship with the public's trust.
"If we were to frequently give donor organs to people who wouldn't survive, society would stop supporting transplantation and the gifts would stop."
Around 50 patients at the University of Chicago Medicine wait for a liver on any given day, along with an additional 17,000 people across the country. There are more people on the list than donor livers, and every year about 2,000 people die waiting for a transplant.
To decide who goes on that list, physicians look at patients' support networks.
"We study the family of every single patient who comes forward for transplant, to make sure that we will have excellent follow-up after the surgery is done," Azzam said.
Living with a transplanted organ means daily medications, lots of doctors' appointments, and a surprising emotional strain. It takes an enormous commitment from a patient’s family to get through the long recovery.
After 15 months in the hospital, Serenity went home without a new liver. But she had a secret weapon in her devoted parents.
The Calerways worked tirelessly for her health, to help her get healthy enough for a transplant. Soon, she could sit up and could follow an object that moved into her gaze, important markers that showed she was thriving in spite of her failed liver.
Azzam was impressed. “The support of her family was the most important contributing factor to her going back on the transplant list,” she said.
Then, on Serenity's second birthday, the University of Chicago Medicine was offered an infant donor liver. The Calerways rushed her back to the hospital.
Little did her parents know that there was another mountain to climb.
Transplanting a liver is the most complex surgery performed at the University of Chicago.
“By the time you’re operating on someone in liver failure, you don’t have any clotting factors," Millis said. "The patient is malnourished. You have blood flow problems. And then you have lots of anastomosis issues”-- difficulty connecting the blood vessels in the new organ.
During Serenity’s surgery, Millis ran into a catastrophic complication: He unclamped her hepatic artery, but blood wouldn’t flow out of the new liver.
"It was unusual," he said. "I've never seen a case like hers and I've never read about one."
Soon the transplanted liver failed and she was relisted as a Status 1A -- in the most desperate need.
After the second liver transplant, two weeks later, Millis discovered an abnormality in Serenity’s belly.
“She was born with a wall between the lower part of her body and her heart. We couldn’t see it without an MRI, because we had clamped at that level.” Millis bypassed the blockage, and sent the blood from the liver directly to her heart.
Serenity improved immediately. “She didn’t have a smooth path, but her new liver is doing well and her recovery is terrific,” Azzam said.
The Calerways have no information about the two families who donated a child's organs and saved Serenity, except that both families suffered a terrible tragedy.
"Maybe hearing Serenity's story will encourage families who have donated organs after a child passes," Ricky Calerway said. "Their children live on through ours."